W

Competence Assessment
in Dementia

Edited by Gabriela Stoppe

On behalf of the European
Dementia Consensus Network

SpringerWienNewYork
Prof. Dr. med. Gabriela Stoppe
Universitäre Psychiatrische Kliniken, Basel, Schweiz

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PREFACE
Dementia and related disorders affect the suffer-
ers’ ability to perform activities of daily living and
to make appropriate decisions about various issues
relevant to their life. While there is no disagreement
about these facts there is little clarity and even less
consensus about the ways in which competence to
make decisions should be assessed in daily practice
– nor is there agreement about the levels of compe-
tence at which it is in the best interest of the people
with dementia to have a guardian and receive legal
protection against abuse and other mistreatment.
In daily clinical practice there is a large heterogene-
ity in procedures used for the assessment of compe-
tency in dementia across Europe, and we are sure
that in a considerable number of patients probably is
not served best with the methods applied in current
practice. This highlights the need for a thorough dis-
cussion of this topic in a European perspective.
The European Dementia Consensus Group
(EDCON) was established by the Madariaga Founda-
tion in Brussels to identify such areas of controversy
and disagreement related to dementia and to de-
velop consensus about them among all concerned: a
further task of the group is to seek ways to promote
the best possible care based on such a consensus. The
group is multidisciplinary and serves as a steering
mechanism used to achieve these goals. In its work
it relies on a group of expert advisors in European
countries and on the support of non-governmental
organizations with which it has established working
relations.
Until now the EDCON has worked on the devel-
opment of a consensus about a variety of areas of pos-
sible controversy including the disclosure of the di-
agnosis of dementia to patients and their carers, the
minimal standards of care for people with dementia1,
the improvement of access to diagnosis and treat-
ment2, ethical issues related to research in dementia3,
the problems related to severe dementia, stigma and
social exclusion of people with dementia, assessment
of outcome of treatment of dementia and the assess-
ment of competence of people with dementia. The
work to develop consensus on the latter subject lead,
inter alia to the production of this volume.
In its work the EDCON Steering committee se-
lects areas on which it will concentrate and desig-
nates a coordinator for the work on each of those. The
coordinator then undertakes to assemble the existing
evidence and works with a group of expert advisors to
assess and summarize it, usually in the form of a sci-
entific paper or a book. Professor G. Stoppe was thus
invited to coordinate the work on the development
of the consensus of the competence of persons with
dementia. The consensus statement that the group
proposed to the Steering committee after its review
of the evidence and its discussions is given on page 11
and the working papers produced in the course of the
work on this area are contained in this volume.
1
Burns A on behalf of EDCON (Ed) Standards in dementia
care. Taylor & Francis, London and New York 2005
2
Waldemar G, Phung KTT, Burns A, Georges J, Hansen FR,
Iliffe S, Marking C, Olde Rikkert M, Selmes J, Stoppe G, Sar-
torius N (2007) Access to diagnostic evaluation and treat-
ment for dementia in Europe. Int J Geriatr Psychiatry 22:
47–54
3
Olde Rikkert M, van der Vorm A, Burns A, Dekkers W, Rob-
ert P, Sartorius N, Selmes J, Stoppe G, Vernooij-Dassen M,
Waldemar G, on behalf of the European Dementia Consen-
sus Network (EDCON): Consensus statement on genetic
research in dementia (submitted)
Preface

It is my pleasant duty to thank, on behalf of sembled in this volume. Our special thanks go to Pro-
EDCON, all the experts who have worked with Pro- fessor Stoppe who has guided the group’s work and
fessor Stoppe and who had produced the papers as- edited this volume.

Prof. N. Sartorius, MD, PhD

Chairman of the EDCON Steering Committee

Members of the EDCON Steering Committee

Prof. Alistair Burns, Manchester (UK)
Prof. Marcel Olde Rikkert, Nijmegen (NL)
Prof. Philippe Robert, Nice (F)
Prof. Norman Sartorius, Geneva (CH) (Chair)
Dr. Jacques Selmès, Madrid (E) (Secretary)
Prof. Gabriela Stoppe, Basel (CH)
Prof. Gunhild Waldemar, Copenhagen (DK)

VI
CONTENTS

Introduction Chapter 6
Why is competence assessment important? Are legal systems in Europe fit
Development of the EDCON for the dementia challenge?
consensus statement 1 Approach of the Council of Europe 61
Lienhard Maeck and Gabriela Stoppe Nicole Kerschen

EDCON-Consensus: Assessment Chapter 7

of Competence 11 Testamentary and financial competence
issues in dementia 71
Chapter 1 Konstantinos N. Fountoulakis and
Neuropsychological assessment 13 Katerina Despos
Pasquale Calabrese
Chapter 8
Chapter 2 Assessment of competency and
Brain structures involved in dementia 25 advance directives 77
Matthias Brand and Hans J. Markowitsch Julian C. Hughes

Chapter 3 Chapter 9
Medical factors interfering with Informed consent in dementia research 85
competence in dementia 35 Anco vd Vorm and Marcel GM Olde Rikkert
Maria E. Soto and Bruno Vellas
Chapter 10
Chapter 4 Assessment of fitness to drive, possession
Drugs that affect competence 41 of professional drivers’ license, possession
Conor O’Luanaigh and Brian Lawlor of firearms, and pilot’s certificate in clients
with dementing conditions 93
Chapter 5 Kurt Johansson and Catarina Lundberg
Who decides who decides?
Ethical perspectives on capacity and Chapter 11
decision-making 51 Practice of Competence Assessment
Deborah Bowman in Dementia: Austria 103
Johannes Wancata and Josef Marksteiner
Contents

Chapter 12 Chapter 21
Practice of Competence Assessment Practice of Competence Assessment in
in Dementia: Denmark 107 Dementia: Poland 141
Dorthe Vennemose Buss and Gunhild Waldemar Andrzej Kiejna, Joanna Rymaszewska, and
Tomasz Hadryś
Chapter 13
Practice of Competence Assessment in Chapter 22
Dementia: Finland 109 Practice of Competence Assessment in
Raimo Sulkava Dementia: Portugal 147
Horácio Firmino, Pedro Silva Carvalho, and
Chapter 14 Joaquim Cerejeira
Practice of Competence Assessment in
Dementia: France 113 Chapter 23
Marie Bouyssy, Emilie Legay, and Vincent Camus Practice of Competence Assessment
in Dementia: Romania 151
Chapter 15 Nicoleta Tătaru
Practice of Competence Assessment in
Chapter 24
Dementia: Germany 117
Practice of Competence Assessment
Volker Lipp
in Dementia: Spain 155
Fernando Marquez and Raimundo Mateos
Chapter 16
Practice of Competence Assessment Chapter 25
in Dementia: Greece 121 Practice of Competence Assessment
Magda Tsolaki and Eleni Tsantali in Dementia: Sweden 161
Karin Sparring Björkstén
Chapter 17
Practice of Competence Assessment Chapter 26
in Dementia: Ireland 125 Practice of Competence Assessment
Mairead Bartley and Desmond O’Neill in Dementia: Switzerland 165
Marc Graf and Eva Krebs-Roubicek
Chapter 18
Practice of Competence Assessment Chapter 27
in Dementia: Italy 129 Practice of Competence Assessment
Rosa Liperoti and Roberto Bernabei in Dementia: Czech Republic 169
Iva Holmerová, Martina Rokosová, Božena
Chapter 19 Jurašková, Hana Vaňková, Hana Čvančarová,
Practice of Competence Assessment Pavla Karmelitová, and Eva Provazníková
in Dementia: The Netherlands 131
Marcel G.M. Olde Rikkert Chapter 28
Practice of Competence Assessment
Chapter 20 in Dementia: UK 175
Practice of Competence Assessment Sarmishtha Bhattacharyya and Alistair Burns
in Dementia: Norway 137
Knut Engedal and Øyvind Kirkevold List of Contributors 181

VIII
Introduction
WHY IS COMPETENCE ASSESSMENT IMPORTANT?
DEVELOPMENT OF THE EDCON CONSENSUS STATEMENT
Lienhard Maeck and Gabriela Stoppe
1 Preface
The following chapter serves to underline the impor-
tance of developing consensus on the competence
of the elderly, especially the demented population.
Briefly said, the percentage of the elderly in the pop-
ulation is increasing in modern societies due to the
increased life expectancy and reduced birth rates. In
consequence an age-associated disease as dementia
is going to double its prevalence within the next 20
years. Family and household structures change with
more single households, more relationships on dis-
tance and shorter lifespan-partnerships. Individual
rights and autonomy are increasingly and generally
acknowledged as having high priority, maybe also
because there seems to be more tolerance to and
higher variety of attitudes and beliefs. Last but not
least, medical progress has allowed to analyse mental
processes with a variety of methods and thus opened
opportunities for adequate multi-modal assessments
and understanding.
2 Increasing numbers of elderly
In the year 2006, Europe’s demographic development
is characterized by one of the lowest birth rates world-
wide and a continuous increase in life expectancy. In
1995, on an average, a European old age pensioner
faced about four labour forces. According to a United
Nations’ (UN) prognosis, this ratio will change to 1:2
by the year 2050 [UN 2004]. In the predominantly east
European countries which joined the European Un-
ion (EU) in the year 2004, the result of this paneuro-
pean tendency is particularly obvious: according to a
study initiated by the German “Institut der deutschen
Wirtschaft” (IW) in 2004, mainly due to a low birth
rate, the Estonian population will decrease about
57% by the year 2050, the Hungarian and Czechian
about 25%, and Polish still roughly 15% (IW 2004). Be-
cause of this transnational demographic change the
percentage as well as the absolute number of 60 years
old and older Europeans will raise from today’s 21%
(151.8 million) to 34% (225.3 million) in the coming
44 years. As life expectancy of citizens 60 years of age
in the same time period will also increase from 18 to
22 years (UN 2004), typically age-associated diseases
like dementia will become a more and more impor-
tant social as well as economic factor.
3 The impact of dementia and its diagnosis
and treatment
Worldwide, prevalence rates of dementia are sup-
posed to double every 20 years to 81.1 million by 2040.
As for the situation in Europe, likewise, the number of
about 5.3 million demented people in the year 2000 is
supposed to clearly surmount 10 million within the
next four decades (Ferri et al., 2005). Though treat-
ment options still remain limited and future need for
care is generally not to avoid, with the introduction
of cholinesterase inhibitors (ChEIs) in the mid-90s,
progression of Alzheimer’s disease (DAT) as the most
prevalent primary neurodegenerative dementia can
be slowed down (Burns et al., 2006). In addition non-
pharmacological treatment options as well as caregiv-
er support models have been developed and evaluated
Introduction: L. Maeck and G. Stoppe
(Sitzer et al., 2006; Spector et al., 2003; Quayhagen et
al., 2000). Moreover, vascular dementia (VD), the next-
common cause of dementia, has become a promising
target for primary and secondary prevention (Wolf and
Gertz, 2004; Hebert et al., 2000). Overall more elderly
persons as well as better treatment options will lead to
an increasing number of mildly to moderately affected
demented patients who, among others, will have to
make decisions on important issues.
4 Changing family structures
This becomes even more important as family struc-
tures are heavily changing throughout Europe. While
some decades ago a human being used to have one
spouse and one occupation throughout his or her life,
modern lifes seem to be less continuous and require
more flexibility and “life long learning”. Technologi-
cal achievements provide more mobility and security
on the one hand. On the other hand, however, their
use is often complicated and requires much effort for
the users to be up to date. A common example might
be the technology of mobile phones. The use of the
internet has only recently become a matter of interest
of the elderly population, too. Elderly persons in gen-
eral are more “conservative” and the neuropsychol-
ogy of aging is characterized by a loss of “fluid” com-
ponents like processing speed, attention and learning
and a stability of knowledge and experience (Craik
and Bialystok, 2006). However, also the regulation of
affects and emotion is changing. Positive affects are
more prevalent than negative ones and quality of life
is usually higher in older compared to younger age
groups (Pinquart and Sorensen, 2001; Staudinger et
al., 2003; Diehl et al., 1996). Since life experience and
the psychological status as well as cognitive func-
tioning are important for decision making in general,
there is no reason to assume an impaired function-
ing of the elderly person in general. However, demen-
tia and other mental disorders like, e.g. depression
threat the self-determination of the individuum. This
becomes more important in a society which changes
more rapidly than before.
2
In addition families have become smaller and
many elderly people live distant from their grown-up
children (Lang, 2001). Family care, still the most fre-
quent form of ambulatory support for the demented,
will become less granted in the future. This challeng-
es societal structures and forms of intra- and inter-
generational help are under discussion.
5 Legal frameworks
Another political trend is the tribute to and appre-
ciation of individual rights, especially patient rights.
This applies to the former paternalistic medical sys-
tem, and at the moment, all societies discuss more or
less intensively, e.g. matters of advance directives or
living wills and the problem of informed consent. Af-
ter the Council of Europe had agreed on a Convention
for the protection of human rights and fundamental
freedoms in November 1950, it defined principles and
legal standards in the “Convention on human rights
and biomedicine” during the 1990’s (see Chap. 9). This
Convention is the first legally binding international
text designed to preserve the human being against
the misuse of biological and medical advances.
As important as legal structures are, much im-
portance must also be given to the interaction be-
tween the (demented) patient and the community,
and the physicians and lawyers especially. The in-
formation and counseling of a patient is not only in-
fluenced by knowledge, but also by communication
skills, attitudes and moral respect for the patient. And
on the patient’s side, trust in the physician as well as
awareness of the disease, play a major role. And de-
mentia itself might influence the decisions, too. In a
small study in fifty outpatients incapable of complet-
ing advance directives, these were significantly more
likely to opt for life-sustaining intervention than cog-
nitively intact controls (Fazel et al., 2000)
Studies could show, that many physicians exhib-
it negative attitudes (ageism) against their elderly pa-
tients (Flick et al., 2005; Uncapher and Arean, 2000).
Especially with regard to the management of the de-
mented patients nihilism can often be found to affect
 Why is competence assessment important? Development of the EDCON consensus statement
detection rates and management. Thus, early diag-
nosis of dementia is far from being reached in pri-
mary care (Turner et al., 2004; Van Hout et al., 2000;
Cody et al., 2002; Waldemar et al., 2007; Stoppe et al.,
2007). Applying various methods, studies revealed
detection rates of 12–33% in mild and of 34–73% in
more advanced dementia (summarised in Stoppe et
al., 2007). Also, being sceptical on the impact on out-
come, many hesitate to get into a diagnostic work-up.
This attitude is often shared by patients, caregivers
and the public (Gely-Nargeot et al., 2003; Connell et
al., 2004; Waldorff et al., 2003; Iliffe et al., 2003). Early
diagnosis however is a prerequisite to allow an indi-
viduum to decide what is necessary facing the usu-
ally progressive course of dementia.
6 The problem of competence in general
But, what means assessment of competence? In liter-
ature, there is some consensus to regard competence
or competency in a juridical sense by addressing to
a persons’ legal qualification to perform an act; the
frequently synonymously used term capacity, how-
ever, rather describes a medical status as judged by
a health care professional. We have agreed to use the
term competence in the broadest sense including ca-
pacity, performance, ability and competency.
Differentiating capable from incapable subjects
remains an issue at stake for both, physicians and le-
gal experts. To adequately cope with that challenge, an
evidence-based assessment of competence will be of
growing importance. However, throughout the litera-
ture, measurement of decision-making abilities and
decisional competence is highly heterogeneous (Kim
et al., 2002). The international medicolegal literature
usually refers to an operational model of competence
defined by Applebaum and Grisso (1988). According
to this, competence is defined as the ability to un-
derstand, appreciate, reason and to express a choice.
Competence might be judged categorically or dimen-
sionally. The categorical approach has to be rejected
in case of dementing conditions. Not only that if di-
agnosis of dementia would implicate the withdraw-
al of the driving licence this would lead to avoiding
diagnosis in many people. Moreover, dementia does
not imply incompetence for all purposes per se. The
functional approach however, is time-consuming and
in theory, everyone should have a capacity-assess-
ment each time they make a decision. In addition, le-
gal standards for competence vary between jurisdic-
tions and even prominent commission reports and
scholars vary in their descriptions of constructs. Last
but not least, there is uncertainty about the threshold
between competent/incompetent. The latter applies
especially to psychometric testing. That might be one
reason that still experts’ categorical judgements are
widely used as gold standards. Empirical studies re-
vealed however mostly low inter-expert agreements
with kappa values between 0.6 and 0.8 at best (Etch-
ells et al., 1999; Molloy et al., 1996). As to be expected,
interrater agreement can be trained and considerably
increased (Marson et al., 1997; 2000).
Apart from the following chapters of this book,
which serve to give deeper insight into the methodo-
logical aspects of competence assessment for vari-
ous purposes and to the situation in many European
countries, the following paragraphs serve to under-
line the need for operational criteria to determine
competence. This will be done with focus on typical
core issues which depend on a “qualified” decision
from or with respect to a demented person.
7 Focus on testamentary competence
The elderly generation is in possession of consider-
able material assets and cash value determining
legacies of corresponding height. In Germany, as-
sets worth about 1.17 billion € have been left during
1990 and 2000; a total of 2.25 billion € will have been
transmitted during the following decade (BBE 1999).
As testamentary disposals are of immense micro-
and macroeconomic as well of familiar importance,
cognitive requirements with respect to the testator
deserve attention. Involving higher frontal/execu-
tive cerebral functions the term testamentary capac-
ity refers to a persons’ ability to execute a valid will.
3
Introduction: L. Maeck and G. Stoppe
In Europe, competency to contract and make a will
are typically regulated in national specific civil codes.
There is a general conformance that, first of all, testa-
mentary capacity implies consciousness of making
a will, i.e., a basic understanding of a wills’ nature. It
is proposed, that it should also assume a knowledge
about the extent of property to be left, about the legal
heirs, and about how the property should be divided
(Shulman et al., 2005; Regan et al., 1997). Is it also
necessary to know about the exact value of the assets
to be distributed (Arie, 1996)?
Psychometric approaches seem suitable to ad-
equately assess complex competencies like testa-
mentary capacity. It has been shown, that declines
in semantic knowledge, short-term verbal recall, and
simple reasoning ability predict physicians’ judg-
ments on the three most difficult and clinically most
relevant legal states (appreciating consequences and
providing rational reasons of a treatment choice,
understanding the treatment situation and choices)
(Earnst et al., 2000); however, it is unclear, whether
these capacities are of significant relevance regarding
the claimed direct impact on a given will (Vollmann
et al., 2004).
8 Focus on informed consent
Except in the case of an emergency, in Europe, physi-
cians are generally obliged to obtain an informed con-
sent (patients’ agreement) to any intervention like in-
stitutionalisation, diagnostics, treatment, and partic-
ipation in research. It generally is required to tell the
patient anything that would substantially affect his
or her decision. Typically, such information includes
the nature and purpose, its risks, consequences, and
any alternatives, if existing. The information has to
be given in a way which is adapted to the abilities of
patient. For the acting of the doctor it is decisive what
is in the patients’ best interest (Arie, 1996).
Usually, three basic components of informed
consent are defined: being informed, voluntary, and
competent. It is of questionable relevance whether
and how long a person might recall the information
4
given. Even in non-demented adults studies show
that a considerable number of patients does not re-
call the information even hours later (Rosique et al.,
2006).
In case a patient cannot give informed consent,
mostly a court or judge is legitimated to install a
guardianship. Competencies of a guard are usually
regulated in the individual national Civil Codes. They
may be limited to special areas of interest, i.e., financ-
es, residence, or consent to diagnostic and treatment.
In some countries, families may decide for their inca-
pacitated relatives without formal legitimisation by a
judge or court. Which model is best for the demented
people?
A special problem is the informed consent for
research purposes. The Declaration of Helsinki for
research ethics is applied in almost all countries. Re-
search on persons under legal guardianship implies
informed consent of the legal representative in ac-
cordance with national law. There are debates as to
whether and under which conditions research in de-
mented patients might be done, even when no direct
profit for the patient might arise. An example might
be to take cerebrospinal fluid on multiple occasions
just to analyse the change of biochemical parameters
in relation to specific symptoms of dementia. From
the results of this research future treatments might
arise. This would mean that not this individual pa-
tient, however the group of the demented patients
might have some benefit. This so-called group-spe-
cific benefit as reason for applying research to inca-
pacitated persons has to be discussed.
This is a frequent problem in research. According
to a study from Italy up to 70% of patients with mild
and moderate dementia of Alzheimer’s disease eligi-
ble for taking part in a drug trial, were incompetent
(Pucci et al., 2001). Authors argue, that patients with
DAT not necessarily have to be declared as being in-
capacitated making a decision whether or not to take
part in a clinical study (Karlawish et al., 2002). How-
ever, today it depends on the individual researcher
and his ethical standards to judge whether a patient
is able to consent to a scientific study or not. It is
therefore not surprising that a recent transeuropean
 Why is competence assessment important? Development of the EDCON consensus statement
survey on the practice of obtaining approval from
medical research committees regarding the ICTUS
study determined a very heterogeneous assessment
of informed consent. It also showed great differences
in study evaluation by the corresponding ethical com-
mittees demonstrating need for future harmonization
(Olde Rikkert et al., 2005). Since research is needed to
develop treatments and service delivery, the impor-
tant protection of patients’ individual rights should
not lead to exclusion of demented patients and their
caregivers from research per se. But how can we find
a solution that balances the interests in the patients
best interest?
9 Focus on advance directive
Advance directives, also called living wills, anticipate
situations when a person becomes incapable to de-
cide on its own. Exclusively within the framework of
existing legislation, they comprise distinct instruc-
tions about any desired prospective treatment and
care. The person concerned should have a basic un-
derstanding of a living will’s nature. This should in-
clude the realisation of a fundamental problem that,
due to the impossibility of accurately predicting fu-
ture illness, a precise knowledge of coming situations
in which the living will might apply, is impossible.
Moreover, the concerned person should be free from
any abnormal state of mind, which might have a di-
rect impact on the understanding of a living will and
its potential consequences. This means that ideally,
the person who defines his or her advance directive,
is at that moment free of any mental disorder which
might affect the directive. It has been shown, that, e.g.
depression changes the preferences for life sustaining
therapies (Blank et al., 2001). Taking into account the
high prevalence of depression in the elderly and the
underdetection of the disease there should be a con-
siderable number of persons who express a living will
of at least questionable validity (Charney et al., 2003).
In addition the attitudes of the family and the society
might play a role. In the elderly an altruistic motiva-
tion of decisions has been described (Lang, 2000).
Other relevant questions to be answered are
those, whether the living will must exist in written
form, whether there should be a register (central, na-
tional…) and whether the directive should fade out
if it is not renewed in time course. It is commonly
suggested that directives with regard to future treat-
ment should be reported to the patient’s health care
provider, relatives and other close persons. Generally
it has to be considered, that any advance directive in
a situation the patient has not predicted is unlikely
to remain in force when acting against the presumed
interest. Especially in demented people, this might
be of importance in a positive sense, as this disease
could be a less fatal experience both for the patient
and their caregivers than generally assumed in public
opinion.
10 Focus on driving competence
In later life, with respect to the maintenance of mental
and physical health, social contacts and quality of life,
driving capacity may become a critical factor (Marot-
toli et al., 1997). However, perhaps as a result of the
rapidly increasing number of older drivers in the de-
veloped world, many European countries introduced
obligatory health checks in the elderly. This might be
surprising, as, on the one hand, old-aged drivers play
a subordinated role in causing road accidents; rather,
in modern traffic, they are at increased risk of being
the victim in the traffic, also as pedestrians, bicyclists
or train users (Cerelli, 1989). Since many of the elderly
reduce driving voluntarily, it is also debatable wheth-
er the investments in screening justify the earning of
a reduced accident rate, if it occurs at all.
As Johannson and Lundberg point out in the re-
spective chapter, many aspects should be taken into
account: neuropsychological functions like atten-
tional functions and visual processing, visual acuity,
insight into disease and the presence of somatic dis-
orders and drug treatment.
While many regulations exist with regard to health
checks of the elderly in Europe, there is not much em-
pirical research supporting this. And security aspects
5
Introduction: L. Maeck and G. Stoppe

also apply to pilots licenses for planes and boats. Do
countries with regulations for driving checks in the
elderly also check for the use and the possession of
firearms? This is especially true for a country like Swit-
zerland where many military weapons are in private
households. While there are no obligatory checks with
regard to this, those exist for driving licence.
Nevertheless, European Council Directive 91/439/
EEC constitutes the rationale for national criteria re-
garding medical fitness, which are supposed to be
required for driving (White and O’Neill, 2000). This
directive is not age-related and primarily focused on
somatic diseases. Moreover, with regard to the proc-
ess of driving skills’ assessment in the European eld-
erly, a significant transnational heterogeneity can be
assumed. This affects the content of health checks
which may consist of a “general”, in particular cases
poorly operationalized, check-ups or self-reporting
questionnaires as well as neurological and psych-
iatric examinations. Would it make sense to foresee
a regular screening for signs of dementia? Is there a
consensus regarding age at entry, and following time
intervals for health check-ups? And how heteroge-
neous are the regulations applied with regard to the
obligation of reporting any illness to the authorities,
when potentially affecting driving skills?

Table 1. Questionnaire used for the e-mail survey (for details see text)

• Testamentary capacity
– Is there an obligatory assessment of mental competence when making a testament?
– Who assesses testamentary capacity? Is the individual professional trained for dementia?
– How is testamentary capacity documented?
• Informed consent
– Is an informed consent obligatory for Institutionalisation/Diagnosis and treatment/Participation in research
– How is informed consent managed in people with dementia?
– How is decided, whether a formal attorney (guardianship) is necessary?
– Does the procedure differ with regard to informed consent for (please specify)
Institutionalisation/Diagnosis and treatment/Participation in research
– Is it possible to arrange formal guardianship only for certain areas of competence (e.g., finances, treatment…)?
– Can a spouse or child decide for the patient without a formal assignation as guardian concerning the following areas?
If yes, please specify: Institutionalisation/Diagnosis and treatment/Participation in research
• Advance directives
– Are advance directives used?
– How and where are they documented?
– How long are they valid (is, e.g., renewal necessary?)
• Driving licence
– Is there a regular health check required for the elderly to keep their driving licence? If yes,…
– What does it include (obligation)?
– Are there formal requirements available?
– At what age do mandatory checks begin and at what intervals are they carried out?
– Who performs these health examinations and checks?
– Are physicians obliged to inform authorities about the presence of conditions interfering with driving?
• Have any formal steps been taken to include questionnaires or other screening tools for dementia
in any of the following competency assessments?
– Testamentary capacity
– Informed consent
– Advance directives
– Driving licence

6
 Why is competence assessment important? Development of the EDCON consensus statement
11 The situation in Europe
For the situation in Europe, national legal systems
demonstrate relevant differences, considering for ex-
ample the role of the individual and the family. This
was the reason for the EDCON group to get a first
impression on the situation by performing a survey.
Dementia and legal experts from seventeen European
countries agreed to fill out a questionnaire, which
was sent to them via e-mail (Denmark, Norway, Fin-
land, Germany, Netherlands, Belgium, Great Britain,
Ireland, Switzerland, Austria, France, Spain, Italy,
Portugal, Tschechia, Poland, Romania). The results
were discussed in an expert group at a conference in
Basel. This group consisted of two legal experts, one
forensic psychiatrist, two old age psychiatrists and
one neuropsychologist. The survey and the confer-
ence took place in 2004. The results and a review of
the literature served as basis for the EDCON consen-
sus. The questionnaire is given in Table 1.
Overall the following chapters will show, that
competence cannot be easily defined, but clearly is
a multidimensional construct with important clini-
cal, legal, ethical, social, and policy aspects. Clarity
in competence assessment is founded on strong con-
ceptual foundations, on empirically grounded assess-
ment instruments and clinical practices, on appre-
ciation of the clinical and legal contexts in which the
assessments take place, and on ongoing study and
critique of these assessments and practices. Com-
petence assessment is an interdisciplinary endeavor
that calls for creative collaborative, and cross-disci-
plinary approaches (Marsden and Moye, 2007).
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9
This page intentionally blank
EDCON-CONSENSUS: ASSESSMENT OF COMPETENCE
Being aware that there are many other terms avail-
able like capacity or competence,
Defining the term “competence” in the legal as well
as the clinical meaning of having the ability to under-
stand, appreciate, reason and decide on specific, im-
portant issues of one’s daily life,
Aware of the increasing emphasis on the assessment
of competence of elderly persons possibly affected by
dementia,
Cognizant of the fact that the assessment of compe-
tence can have significant consequences for the hu-
man rights and care of persons affected by dementia,
Informed about the differences that exist between le-
gal provisions and requirements as well as between
competence assessment procedures in different
countries of Europe,
Concerned by the fact that the current differences in
the manner of assessment of competence as well as of
disclosure of diagnosis may expose the elderly person
with dementia and society to harmful consequences
of an inappropriate assessment of competence,
Aware also of the fact that the evidence about the
validity of different methods for the assessment of
competence is scarce and that the existing methods
have to be used with great care to avoid erroneous
judgments,
Recognizing that competence may vary over time
and in different situations and that the lack of compe-
tence for a particular purpose does not imply that the
person is lacking competence to perform adequately
with respect to other purposes,
EDCON recommends that the following consensus
statement should be adopted as the basis for the as-
sessment of competence in European countries:
(1) The assessment of competence should be used
to enhance the welfare of people with dementia
and should serve to provide help and shelter to
those whose competence is reduced and auton-
omy to those where competence is maintained.
(2) The diagnosis of dementia should not be taken
to automatically imply a lack of competence.
(3) Competence should be assessed with respect to
specific purposes. It should not be assumed that
the lack of competence to perform with regard
to a particular purpose means that there is a lack
of competence to perform with regards to other
purposes.
(4) Competence should be assessed repeatedly at
intervals defined by the purpose of the assess-
ment.
(5) The assessment of competence requires spe-
cial skills and should be performed by persons
who can use currently available methods in an
optimal manner.
This page intentionally blank
Chapter 1
NEUROPSYCHOLOGICAL ASSESSMENT
Pasquale Calabrese
1 Introduction
The understanding of aging processes is becoming
increasingly relevant since the average age and lon-
gevity of the population is increasing. Normal aging
is associated with some changes in intellectual func-
tioning. While the so-called cristallized intellectual
abilities (e.g., vocabulary, reasoning) are relatively
preserved, there is a significant decline in cognitive
functions belonging to the “fluid” domains (e.g., per-
ceptual speed, memory load). Nevertheless, effects of
plasticity can also be observed in aging. The latter is
subserved by environmental stimulation. Along with
the aging process there is an increase in prevalence of
the dementia syndromes. In many patients dementia
is preannounced by some partial intellectual decline,
mostly in the memory domain. This syndrome is de-
scribed as mild cognitive impairment (MCI) and re-
presents in some cases a prodromal phase of demen-
tia, since a high proportion of MCI patients convert
to dementia within a year. Unfortunately, most clini-
cians do not screen for cognitive problems in their
practice unless they receive complaints from either
the patients or their relatives.
Alzheimer’s disease is one of the most prevailing
forms of dementia in advanced age. The clinical di-
agnosis is based on physical examination, laboratory
analysis, brain-imaging and mental examination.
The mental status is assessed by neuropsychological
tests. Assessment of dementia and age-related cog-
nitive decline in clinical practice is a core activity of
the specialty of clinical neuropsychology. The practi-
cal implication of psychometric testing, with respect
to competency, is demonstrated by describing some
domain-specific dysfunctions and then presenting
clinical assessment procedures. Neuropsychological
tests in patients with clinically diagnosed dementia
of various etiology have shown quite variable mental
deterioration. While in some forms of dementia there
are some cognitive domains, which seem to decline
very early in the course of the disease, some other
abilities are more robust to neurodegeneration.
2 The role of neuropsychological assessment
in clinical practice
Together with psychiatrists and/or neurologists, neu-
ropsychologists play an important role in the detec-
tion and evaluation of the changes in cognitive func-
tioning that frequently occur in the later decades of
life.
Clinical neuropsychologists are uniquely equip-
ped by training, expertise, and the use of specialized
neuropsychological tests to assess changes in memo-
ry and cognitive functioning and to distinguish nor-
mal changes from early signs of pathology. Although
strenuous efforts are being exerted to identify the
physiological causes of dementia, there are still no
conclusive biological markers short of autopsy for the
most common forms of dementia, including Alzheim-
er’s disease. Neuropsychological evaluation and cog-
nitive testing remain the most effective differential
diagnostic methods in discriminating pathophysi-
ological dementia from age-related cognitive decline,
cognitive difficulties that are depression-related, and
other related disorders.
Chapter 1: P. Calabrese
3 The concept of dementia
Though many contributions from histopathology
to neurochemistry and neurogenetics of Alzhei-
mer’s disease (AD) are progressively contributing to a
deeper understanding of its underlying causes and
specificities it should nevertheless be kept in mind
that the clinical impression which leads to the clas-
sification of a patient of either suffering from demen-
tia or from another psychiatric condition is based
on cognitive-behavioral features which themselves
are highly influenced by psychological and also eco-
logical variables. In this context ecological aspects
include those environmental factors which an indi-
vidual is confronted daily with, and which have to be
managed successfully to live independently in a soci-
ety which is getting more and more complex. Aspects
of socio-ecological functioning have been recognized
as capital components in the definition of wellbeing,
health and disease by the World Health Organization
(WHO). They now are inherent criteria in defining
dementia and have been formalized and adopted by
several classification systems (e.g. ICD), by the Ameri-
can Psychiatric Association in the DSM IV and by a
joint committee of the National Institute of Neuro-
logical and Communicative Disorders and Stroke
(NINCDS) and also by the Alzheimer’s Disease and
Related Disorders Association (ADRDA) (McKhann
et al., 1984).
Alzheimer’s disease (AD) is the major cause for
dementia in later life (Evans et al., 1989). The most
widely accepted diagnostic criteria for probable AD
are those offered by the National Institute of Neuro-
logical and Communicative Disorders and Stroke
and by the Alzheimer’s Disease and Related Disor-
ders Association (NINCDS-ADRDA; McKhann et
al., 1984). These criteria include the presence of de-
mentia established by clinical examination and con-
firmed by neuropsychological testing. The demen-
tia is described as involving multiple, progressive
cognitive deficits in older persons in the absence of
disturbances of consciousness, of psychoactive sub-
stances, or any other medical, neurological, or psy-
chiatric conditions that might in and of themselves
14
account for these progressive deficits. The Diagnostic
and Statistical Manual of Mental Disorders, 4th edi-
tion, of the American Psychiatric Association (1994)
also outlines diagnostic criteria for dementia of the
Alzheimer’s type that are generally consistent with
the NINCDS-ADRDA criteria. DSM-IV also provides
diagnostic criteria for vascular dementia, as well as
dementia due to other general medical conditions
including HIV disease, head trauma, Parkinson’s dis-
ease, Huntington’s disease, Pick’s disease, Creutzfeldt-
Jakob disease, and other general medical conditions
and etiologies. New causes and varieties of dementia
continue to be elucidated (e.g., dementia with Lewy
bodies; McKeith et al., 1996) and diagnostic criteria
for the dementing disorders continue to be refined
(e.g., International Classification of Diseases-10 and
subsequent revisions).
4 The concept of Mild Cognitive Impairment
(MCI)
Some older individuals have memory problems as
well as difficulties in other cognitive domains. These
deficits may be identified by neuropsychological test-
ing and they may be greater than those typical of nor-
mal aging, but not so severe as to support a diagnosis
of dementia. While some of these persons go on to
develop frank dementia some other patients do not.
Up to the nineties there was not yet a clear consensus
regarding nosology. Proposed nomenclatures includ-
ed mild neurocognitive disorder, late-life forgetful-
ness, possible dementia, incipient dementia, benign
senescent forgetfulness, senescent forgetfulness, and
provisional dementia. There have been numerous at-
tempts to define the transitional stage between nor-
mal aging and pathology. While terms such as incipi-
ent dementia, provisional dementia, and mild cogni-
tive impairment refer to persons who are somewhat
more severely impaired and have a relatively greater
likelihood of eventually becoming demented (Flicker
et al., 1991), terms such as benign senescent forget-
fulness or late-life forgetfulness refer to persons with
milder cognitive difficulties relative to their age peers

who are less likely to go on to develop dementia. At
the end of the nineties the term mild cognitive im-
pairment (MCI) was proposed to a nosological en-
tity to characterize individuals with subtle cognitive
deficits, which are not sufficient to warrant dementia
(Petersen et al., 1997). The original criteria defined by
Petersen and coworkers included the psychometric
substantiation of subjective memory complaints in
absence of other cognitive disorders and repercus-
sions on daily life as well as normal general cognitive
functioning and absence of dementia (Petersen et al.,
1997). While the concept of MCI has made it possible
to identify individuals at high risk for dementia it has
become clear that MCI is a heterogeneous clinical
entity comprising a)individuals with isolated mem-
ory problems (amnestic MCI) which are thought to
progress preferentially to Alzheimer’s Disease (AD),
b) individuals with slight cognitive problems in mul-
tiple domains (multiple-domain MCI) which may
progress mainly into AD or vascular dementia and c)
subjects with isolated cognitive impairments other
than memory (single-domain, non-memory-MCI)
which may show progression to dementia types other
than AD. Moreover, the heterogeneity refers also to
the trajectory of progression as well as to etiological
factors. Although more recently, the Petersen criteria
have been revised by the European Working Group of
the European Consortium on AD (Portet et al., 2006)
and a three-step diagnostic procedure (syndrome-di-
agnosis, identification of subtype, etiological specifi-
cation) has been proposed, there are still some un-
resolved issues, e.g. pharmacological treatment of
“converters”, preventive strategies etc.
5 MCI and competency
With reference to competency, there is some evidence
that MCI-patients should be carefully assessed, since
their overall legal capacity might be compromised al-
ready at a stage where potential converters do still not
fulfil criteria of dementia. This has been shown by a
study of Griffiths and colleagues (Griffith et al., 2003).
The authors used a standardized psychometric ca-
Neuropsychological assessment
pacity measure (The Financial Capacity Instrument
[FCI]) consisting of 18 financial ability tests (tasks),
9 domains (activities), and 2 total scores to assess fi-
nancial capacity in MCI patients and patients with
mild AD along with a battery of neuropsychological
tests sensitive to dementia. Relative to controls, the
MCI group demonstrated impairments in a variety of
cognitive domains. Moreover, MCI participants dem-
onstrated impairments in FCI domains of conceptual
knowledge, cash transactions, bank statement man-
agement, and bill payment, and in overall financial
capacity. Although these impairments were defined
as mild and only applied to a subset of patients with
MCI they might have a significant impact in higher
order activities of daily life such as financial and tes-
tamentary capacity.
6 Normal aging
Although some healthy aging persons maintain very
high cognitive performance levels throughout life,
most older people will experience a decline in cer-
tain cognitive abilities. This decline is usually not
pathological, but rather parallels a number of com-
mon decreases in physiological function that occur
in conjunction with normal developmental proc-
esses. Thus, cognitive decline appears to be a nor-
mal consequence of aging in humans (e.g., Craik and
Salthouse, 1992). This cross-cultural phenomenon is
most pronounced in speed and flexibility variables
(socalled fluid intellectual properties) and is found
in virtually all mammalian species. The nosological
category of Age-Associated Memory Impairment was
proposed by a National Institute of Mental Health
(NIMH) work group to describe older persons with
objective memory declines relative to their younger
years, but cognitive functioning that is normal rela-
tive to their age peers (Crook et al., 1986). This defini-
tion requires explicit operational and psychometric
criteria to assist in identifying these persons. The
more recent term, Age-Consistent Memory Decline,
has been proposed as being a less pejorative label and
to emphasize that these are normal developmental
15
Chapter 1: P. Calabrese
changes (Crook, 1993; Larrabee, 1996), are not patho-
physiological (Smith et al., 1991), and rarely progress
to overt dementia (Youngjohn and Crook, 1993). The
DSM-IV (1994) has codified the diagnostic classifi-
cation of Age-Related Cognitive Decline. While this
nomenclature has the advantage of not limiting the
focus solely to memory, it lacks the operational defi-
nitions and explicit psychometric criteria of age-asso-
ciated memory impairment. For some older persons,
however, declines go beyond what may be consid-
ered “normal” and are relentlessly progressive. These
more malignant forms of cognitive deterioration are
caused by a variety of neuropathological conditions
and dementing diseases.
7 Cognition and competence
To meet ecological challenges efficiently, human be-
ings are equipped with a sophisticated and highly in-
terwoven network of mental functions which may be
summarized under the umbrella term of cognition.
From the evolutionary point of view, these abilities
may be regarded as the product of progressively re-
fined complementary adaptations caused by selec-
tion pressure, which is exerted by ecological circum-
stances on human species. In psychological terms
this well organized and orchestrated abilities are op-
erationalized as intelligent behavior, meaning that a
cognitive system is able to cope with this whole range
of demands successfully. If, on the other hand, the
cognitive system, which once has worked successful-
ly, gradually fails to accomplish all these tasks within
a certain range of accuracy, as it happens in Alzhei-
mer’s disease, then dementia may be diagnosed. As
already mentioned, the boundary between normal
aging and early cognitive impairment is not sharply
delineated and dementia represents just an extreme
on a continuum between cognitive well-being and
malfunctioning. Thus, by establishing a diagnosis of
dementia, reference must be made to neuropsycho-
logical assessment procedures relying on established
norms.
16
8 History taking and neuropsychology
Careful history taking is the most important initial
step within the diagnostic process. The time of onset
and nature and rate of the course of the difficulties
may unmask experienced problems in everyday life
and may also provide information important to dif-
ferential diagnosis. The clinical interview provides an
opportunity to assess for the presence of deleterious
side effects of medication, substance abuse, previous
head injury, or other medical, neurological, or psychi-
atric history relevant to diagnosis. Obtaining a fam-
ily history of dementia is also relevant. Furthermore,
it is important, when possible, to obtain behavioral
descriptions and subjective estimations of cognitive
performance from collateral sources such as family
members and friends. This information can be ob-
tained either through clinical interview or through
memory complaint questionnaires. It is important
to be particularly alert to discordance between self
and family reports. When formal scales are used,
discrepancies between self and family reports can
be quantified (Feher et al., 1994; Zelinski et al., 1990).
Depressive symptoms in elderly persons can mimic
the effects of dementia (Kaszniak and Christenson,
1994). Psychomotor retardation and decreased moti-
vation can result in nondemented persons appearing
to have pathophysiologically determined cognitive
disturbances in both day-to-day functioning and on
formal neuropsychological testing. Depressive mood
can also cause nondemented persons to over-report
the severity of cognitive disturbance. Consequently,
it is important to perform a careful assessment for
depression when evaluating for dementia and age-re-
lated cognitive decline. Depression can already be as-
sessed during history taking, so that the clinician can
obtain information regarding the client’s body lan-
guage and affective display. Formal mood scales (e.g.,
Beck et al., 1961; Yesavage et al., 1983) can also play an
important role in assessing for depression and have
the advantages of quantifying and facilitating the
assessment of changes in mood over time. Sociocul-
tural factors might also cause some older persons to
underreport or overestimate depressive symptoms. It

might be emphasized that depression and dementia
are not mutually exclusive. Depression and dementia
and/or age-related cognitive decline frequently coex-
ist in the same person. Moreover, depression can also
be a feature of certain subcortical dementing condi-
tions, such as Parkinson’s disease (Cummings and
Benson, 1992; Youngjohn et al., 1992).
9 Cognitive testing
The use of neuropsychological tests may represent
the most important and unique contribution of clini-
cal neuropsychologists to the assessment of demen-
tia and age-related cognitive decline. Neuropsycho-
logical tests are standardized procedures which must
be adopted in a uniform, reproducible manner to allow
inferences with respect to the target behavior on the ba-
sis of a comparison between individual or group data
with a population of reference. Once used in this spirit,
they can be useful as screening procedures, as con-
firming some hypothesized features and also for stag-
ing as well as monitoring a disease course. Since in
the clinical context it is common practice to use one
and the same collection of cognitive tests to measure
onset, severity and progression of AD, clinicians must
also be alert to the fact that different neuropsychologi-
cal tests have different sensitivities which qualify them
either as detecting, staging or tracking tools. The study
of Locascio and coworkers (Locascio et al., 1995) is a
case in point. Their study aimed to identify specific
cognitive deficits of AD and to separate such tests
that qualify for detecting AD from normal controls
and to distinguish these tests from other neuropsy-
chological measures which are of help in either stag-
ing or tracking AD. Although, as a general result, AD
patients performed significantly poorer in all cogni-
tive domains it was shown that while delayed recall
measures showed a sharp deterioration to an early
floor other tests like semantic fluency and immedi-
ate recognition showed a more linear decline across
time.
The clinical implications of this study are many-
fold. First, there is no linearity of cognitive decline
Neuropsychological assessment
between different cognitive functions. Second, even
within a specific domain (e.g., memory) the dec-
remental trajectories may vary. Third, composite
scores, which stem from intermingling subtests with
highly discrepant slopes may obscure disease activ-
ity. As a consequence, the findings of Locascio et al.
point to the difficulty in stratifying subjects with AD
for group studies on the basis of specific cognitive
tests. Thus, psychometric tests should be standard-
ized, reliable, valid, and have normative data directly
referable to the older population. Discriminant, con-
vergent, and/or ecological validity should all be con-
sidered in selecting tests.
If these methodological pitfalls are not suffi-
ciently considered, then their influence may obscure
possible differences which per se might give valuable
informations, e.g. concerning the efficacy of pharma-
cological and/or behavioral treatment (e.g., masking
of potentially good responder subgroups in pharma-
cological treatment studies).
There are many screening tests as well as com-
prehensive approaches that are useful for these eval-
uations. Valuable sources and descriptions are given
in Neuropsychological Assessment (3rd edn.) (Lezak,
1995), and A Compendium of Neuropsychological Tests
(Spreen and Strauss, 1991). A useful compendium
of scales widely used in old age psychiatry is given
by Burns, Lawlor and Craig (1999) and while brief
mental status examinations and screening instru-
ments are not adequate for diagnosis in most cases,
they should at least be adopted where a comprehen-
sive assessment is not possible due to time and staff
limitation. Besides the Mini-Mental-Status-Examina-
tion (Folstein et al., 1975) which is widely used as a
brief and common clinical reference there are some
more recent developments (e.g., DemTect – Kalbe et
al., 2004) which avoid ceiling effects in earlier stages.
Wherever possible comprehensive neuropsychologi-
cal evaluations for dementia and age-related cogni-
tive decline should be done, including tests or assess-
ments of a range of multiple cognitive domains, typi-
cally memory, attention, perceptual and motor skills,
language, visuospatial abilities, problem solving, and
executive functions. However, in more advanced stag-
17
Chapter 1: P. Calabrese
es of dementia a comprehensive neuropsychological
test battery may not be required but instead, more
caregiver-related measures (proxy-questionnaires)
should be adopted.
10 The estimation of premorbid abilitites
When assessing for cognitive declines in older per-
sons it is important to have baseline test data from
earlier years against which current performance
could be compared. Since this informations are often
missing, premorbid abilities have to be estimated by
taking into consideration socioeconomic status, edu-
cational level, occupational history, and client and
family reports which can be converted into standard
formulas (e.g., Barona et al., 1984; Blair and Spreen,
1989). However, clinical judgment can be an impor-
tant part of this process. There are a number of sys-
tematic biases in human judgment that may lead to
inaccurate clinical estimates of premorbid function
(Kareken, 1997). Although various techniques have
been used to estimate cognitive abilities in earlier
years one should nevertheless be aware, that most
measures of current cognitive functioning are age-
sensitive and thus can be affected by already ongo-
ing dementia (Larrabee et al., 1985; Storandt et al.,
1995).
Once a person has been tested, these data can
serve as a baseline against which to measure future
changes in cognitive functions. Magnitudes and rates
of cognitive change, as well as response to treatment,
can also be determined by follow-up testing. In most
cases a half-year follow-up interval is adequate for
monitoring changes in cognitive performance, un-
less the client, family, or other health care profes-
sional report a more rapid decline, emergence of new
symptoms, or changes in life circumstances. Interim
follow-ups including proxy-interviews not involving
formal testing may also be useful in many cases.
Because declines in average levels of perform-
ance with age are observed on some tests, it is im-
portant that tests selected for use in the evaluation
of dementia and age-related cognitive decline have
18
adequate age-adjusted norms. It is also important to
note that comparison of an individual’s test perform-
ance against even age-adjusted norms can be mis-
leading if the individual’s earlier abilities fell outside
of the population curve. Until recently, the relative
lack of older adult norms posed a problem for clini-
cians, but better and larger older adult standardiza-
tion samples are now available for many commonly
used clinical tests. However, normative database for
very old persons and for diverse linguistic and ethnic
minorities as well as some other special populations
(illiterates, low-IQ as well as high-IQ performers) is
still scarce.
11 Domain-specific characteristics of
cognitive decline
In the following, we will present some characteristic
features of early cognitive alterations in the domains
of attention, memory, language visouconstruction and
flexibility as they become evident in neuropsychologi-
cal tests. A wealth of studies have shown that cognitive
domains, as well as their respective subfunctions are
not uniformly affected and also vary in their dynamics
of decrement (Becker et al., 1988; Locascio et al., 1995;
Rebok et al., 1990; Welsh et al., 1992). Thus, domain-
specific testing should be a promising approach.
12 Attention
Attention is most commonly used to refer to selec-
tivity of processing. Neuropsychological studies with
brain injured as well as healthy individuals have
shown that attention may be further subdivided into
specific domains that differ in their functions as well
as in their anatomical basis (Posner and Petersen,
1990). Clinical studies sustain the view that different
brain lesions may lead to distinct attentional impair-
ments. Furthermore, more recent studies indicate an
early decrement of attentional capacity in dementia
(Perry and Hodges, 2000). Neurocognitive models dis-
tinguish between the following attentional domains:

(1) alertness (with tonic and phasic components)
(2) selective or focused attention
(3) divided attention
(4) vigilance or sustained attention.
While sustained attention refers to the ability to focus
attention over an extended period of time the ability
to concentrate on some single aspects is referred as
selective attention. Distributing attentional abilities
by focusing on different aspects simultaneously is
called divided attention.
The concept of Alertness is of fundamental im-
portance, since it enables us to react to external de-
mands promptly and timely. The ability to enhance
the attentional capacity within milliseconds is de-
fined as phasic alertness. This ability allows the in-
dividual to anticipate reactions towards incoming
information. Its functional integrity is expressed via
reduced reaction-time latencies in simple stimulus-
reaction-tasks under warning conditions. It is also
mirrored in altered EEG-patterns (eg., so called readi-
ness potentials or “Bereitschaftspotentiale”) which
themselves reflect preparatory actions in the expec-
tation of a stimulus. Thus, measuring alertness reac-
tions is not only of help in a detection of a general
CNS affecion, but it is also an excellent method for
monitoring cholinergic drug-effects which are sup-
posed to exert a strong influence on attentional func-
tions.
In everyday conditions, competency, as the clini-
cal meaning of having the ability to plan and follow a
meaningful action is warranted by basic attentional
capacities, since they form basis of the receptive, in-
tegrative and expressive functioning within a highly
structured cognitive network. Consequently, within
the framework of formal exploration, especially when
there is concern about competency, clinicians have
to consider the following questions:
(1) Is the patient able to to maintain a certain level
of arousal (vigilance)?
(2) Is the patient able to focus long enough his men-
tal stamina towards some specific aspects of ex-
ternal inputs (concentration)?
Neuropsychological assessment
(3) Is the patient able to keep pace with the amount
and speed of incoming information (mental
speed)?
In a next step within the information processing stream
there is a need to combine this incoming information
with preexisting data (memory) and also to translate
the input into a meaningful message (language) if this
message should enable one to react adequately. Fi-
nally the incoming and outgoing information must be
manipulated and monitored internally to disentangle
some ambiguities or to revise some steps in order to
avoid processing errors (cognitive flexibility).
13 Memory
While memory traditionally was fractionated along a
chronological axis into short-term (STM) and long-
term memory (LTM), more actual subdivisions dif-
ferentiate memory along its qualitative domains.
Memory abilities may vary greatly among the differ-
ent manifestations of dementia.
Although there are some controversies among
the content-based subdivisions of memory the dis-
tinction between explicit and implicit learning and
memory domains is generally accepted. Explicit (or
declarative) memory can be further subdivided into
a semantic (general knowledge of the world stored
in a “mental lexicon”) and an episodic (event-related,
autobiographical-bound) domain. Whereas standard
recall and recognition memory tasks demand explicit
and conscious recollection of facts and events, impli-
cit learning may occur without awareness. Declarative
learning can be directly measured by explicitly asking
the subject for the amount of items he or she is able
to remember. Implicit learning and memory efficacy
is measured indirectly as a change in the processing
rate and/or amount of a stimulus due to prior expo-
sure to that stimulus (“priming”). As a general rule,
perceptual and repetition priming and also sensori-
motor skill learning abilities are widely unaffected in
most cortical Dementias (Gabrieli, 1996; Gabrieli et
al., 1993) but can be severely compromised in subcor-
19
Chapter 1: P. Calabrese
tical processes (e.g., Parkinson’s Disease Dementia,
PDD). It is a common feature of dementia that the im-
mediate memory span is intact at initial steps while
the working memory component, which is necessary
to retrieve consolidated information during monitor-
ing the incoming data stream to be stored long-term,
is defective. This feature reflects early changes in ex-
ecutive capacity and becomes even more pronounced
in some variants of frontotemporal dementia (FTD).
Moreover, and with reference to the assessment
of competence it is of practical importance to consid-
er that while some subentities of FTD may be charac-
terized by semantic failures (i.e., difficulties in nam-
ing and identifying the proper significance of a given
word) some other forms may have intact memory
functions in their early stages but may have problems
in monitoring their mnestic capacity (i.e., telling what
came first, which facts have already been mentioned
etc.) due to a pronounced frontal-executive deficit.
14 Assessment of explicit memory
One possibility to examine verbal-auditory and visu-
ospatial short-term memory capacity is given by the
digit-span and block-span tasks respectively. While in
the digit-span task the examinee is asked to repeat
a certain sequence of digits spoken by the exam-
iner in the same order, in the block-span task he or
she is asked to point to a certain sequence of blocks
shown by the examiner. This is done by the help of a
block-board (Corsi’s block-board). In both tasks the
patients are confronted with progressively longer
strings of items they have to touch sequentially. The
inverted version of the same test procedures where
the patient has to begin with the last string or block
and to continue the string of presentation backwards
is suited to tap working memory capacity since the
subject has to perform a dual task mentally (keeping
in mind the presented string of items while inverting
the same string “in the mind’s eye”).
It can be shown that even mildly demented pa-
tients fail to accomplish this task because it involves
more working memory capacity, i.e., the ability to ma-
20
nipulate incoming information internally before pro-
ducing an output. Thus, in clinical practice it may be
observed that the same patient who easily repeated
5 or even 6 digits forward will not be able to achieve
the same number of items when performing the exer-
cise in a backward condition. Inverted span-measure
procedures may help to reveal early working memory
deficits and clinicians should carefully look for dis-
crepancies in the performance between forward and
backward conditions of span-tests. It is evident that
individual with a reduced working-memory load may
exert comprehension difficulties which may prevent
them to take proper decisions since this process may
require to compare concurring alternatives.
The verbal learning ability is also most compro-
mised in dementia. While empirical data support the
idea that recall as well as recognition are defective
in AD some qualitative aspects of a learning slope
which can be derived from list-learning-paradigms,
like serial position effects, acquisition and forgetting
rates, intrusion errors and number of false positives
may be of substantial help in detecting pathological
cognitive decline as well as in the differentiation be-
tween subgroups of patients from presumably differ-
ent entities.
15 Linguistic functions
Patients with AD have preserved orthographic and
also syntactic processing abilities (Glosser et al.,
1998; Waters et al., 1998). While these aspects of spo-
ken language are long preserved in AD, the pragmatic
aspects (which govern conversational rules) and also
the semantic language processing abilities are found
to be altered early in the course of the disease. The
latter seem to be related to regional hypometabolism
of the inferior temporal gyrus and inferior parietal
lobule of the dominant hemisphere (Hirono et al.,
1998). One clinical hallmark of early AD at the lan-
guage level is the violation of communicative rules
concerning clearness, saliency, thoughness and truth
(Grice, 1975). This might lead to serious practical dif-
ficulties in the context of testimonies and other le-

gal affairs. Therefore, when exploring AD patients in
clinical interviews, clinicians should be alert for com-
municative violations through phonologically and
grammatically correct use of words and sentences
(Fromm and Holland, 1989). Although these aspects
are of practical relevance in showing high validity, un-
fortunately to date, the relevant scientific database is
too small and there are only a few systematic linguis-
tic analyses and formalized clinical practicable scor-
ing systems to assess pragmatic language functions
in dementia (e.g., Romero et al., 1995).
Other language-related tests also reveal that cat-
egory-based word-retrieval is progressively compro-
mised in AD (Kessler et al., 1998). This is shown in
controlled oral word association tasks as they require
verbal organizational abilities, which are subserved
by the frontal lobes. AD patients are found to be more
compromised in semantic than in letter fluency. It
is hypothesized that this finding is due to a partial
degradation of the semantic structural-knowledge
system while letter fluency is accomplished by the
help of phonologic and lexical cues. Nevertheless, let-
ter fluency seems to be highly correlated with disease
progression (Kessler et al., 1998). Clinically, word flu-
ency, is tested by using the “word fluency test” which
is part of many dementia screenings. This test meas-
ures the spontaneous production of words beginning
with a given letter (F, A, S) under time constraints.
In normal individuals there is only little decline with
age. There are extensive norms available for this pro-
cedure (Spreen and Strauss, 1991). Since this test
shows a steady linear decline across time for patients
with AD (Locascio et al., 1995) it is best being used for
staging dementia severity.
16 Transcoding abilities
Numeric abilities are of great practical importance
and play an important role in testamentary and fi-
nancial decision making.
A possibility to screen for this function is of-
fered by the transcoding-paradigm introduced by
Tegner and Nybäck in 1990. Subjects are asked to
Neuropsychological assessment
transcode written numbers presented one at a time
into an alphabetic script. Several study groups found
this function to be strongly impaired in AD-patients.
When confronted with this task, AD-patients tend to
intrude numbers into the written word. One possible
explanation is that to write in alphabetic script re-
quires the subject to suppress the more automatized
behavior of using idiographic script by copying the
numbers. This ability per se requires an intact ( fron-
tal guided) shifting strategy enabling the subject to
switch between controlled and automatized behav-
ior.
17 Visuoconstructive abilities
Deficits in constructional abilities including drawing
are often early signs of degenerative dementia and
mostly pronounced in Lewy-Body-Dementia (Hirono
et al., 2005). Since it has been demonstrated that AD-
patients with a poor performance on drawing tasks
more often wander and become lost, this ability is im-
portant to investigate under practical aspects (Hend-
erson et al., 1989).
In a longitudinal study of Kirk and Kertesz (1991)
where spontaneous drawing abilities of 38 AD patients
were followed up for up to 3 years it could be demon-
strated that drawings of AD-patients displayed fewer
angles, impaired perspective and spatial relations,
simplifications and overall impairment compared to
those of control subjects. Interestingly these deficits
were relatively independent of language or memory
impairment measured over the same period.
A characteristic finding in this domain is the
so called “closing-in phenomenon”. This expressive-
visuoconstructive dysfunction is characterized by
the tendency of subjects when asked to reproduce
a drawing to copy as near as possible to the model
or even into it. In a study conducted by Gainotti and
coworkers the authors found that this phenomenon
is found significantly more often in AD-patients than
in subjects with vascular dementia (Gainotti, 1992).
21
Chapter 1: P. Calabrese
18 Conclusion
Dementias are clinically characterized by behavio-
ral disturbances as well as progressive deterioration
of cognitive abilities especially in the domains of at-
tention, memory, language, flexibility and visuocon-
struction. Neuropsychological tests, which specifical-
ly tap these functions, may facilitate diagnosis at an
early stage of the disease. In order to avoid obscura-
tion of diagnostic clarity clinical tests which should
help to assess dementia as well as to monitor disease
progression should be proofed critically as whether
they qualify for one or the other purpose. The cogni-
tive symptomatology may vary substantially among
different forms of dementia leading to clinical syn-
dromes with either predominantly attentional-mnes-
tic, verbal-executive or visuoconstructive-apraxic ac-
centuations of dysfunction. Since these clinical fea-
tures may exert an important influence on individual
competence ranging from societal to legal aspects of
everyday activities they have to be taken into consid-
eration in the assessment of older patients with sus-
pected cognitive decline.
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24
Chapter 2
BRAIN STRUCTURES INVOLVED IN DEMENTIA
Matthias Brand and Hans J. Markowitsch
1 Introduction
Neurodegenerative dementias are linked to severe
damage to various brain structures and intercon-
necting fibres. These structural abnormalities are ac-
companied by additional functional brain changes.
Both structural and functional alterations are found
extensively in various brain regions including corti-
cal and sub-cortical areas. However, dementia-type
specific changes were described in the last years. For
instance, dementia of the Alzheimer type is primarily
associated with damage in the hippocampal region
while brain pathology in fronto-temporal dementia is
centred around the prefrontal cortex and the lateral
temporal lobe. In recent years, investigations using
structural and functional imaging techniques expand-
ed our knowledge on brain correlates of dementia-type
specific behavioural changes. These findings are also
relevant for the diagnosis and differential diagno-
sis of dementias. In this chapter, we will summarise
common findings concerning structural and func-
tional brain abnormalities in patients with demen-
tias of different aetiology. We will focus on the most
prominent type of dementia, the Alzheimer’s disease
(AD). In addition, we will briefly describe the neu-
ral correlates of dementia with Lewy bodies (DLB),
fronto-temporal lobe degeneration (FTLD) including
fronto-temporal dementia, semantic dementia and
primary progressive aphasia as well as the most com-
mon findings in vascular dementias (VD).
2 Structural and functional brain correlates of
dementias
2.1 Primary brain correlates of Alzheimer’s
disease
Alzheimer’s disease (AD) is often seen as a “hippo-
campal dementia” (Ball et al., 1985; see also the re-
view by Mosconi, 2005). Indeed, there is convincing
evidence that structures of the medial temporal lobes
are primarily affected in patients with AD, including
the hippocampal formation, the entorhinal and the
perirhinal cortices as well as the parahippocampal
gyrus (e.g., Kantarci and Jack, 2003; Ezekiel et al.,
2004; a meta-analysis of studies that used structural
and functional brain imaging techniques in AD can
be found in Zakzanis et al., 2003). As a result of the
critical function of the hippocampus and surround-
ing structures of the medial temporal lobe in mem-
ory processes (see Markowitsch, 1995; Markowitsch,
2000; Brand and Markowitsch, 2003; Piefke et al.,
2003) damage to these structures in AD is considered
to be the neural correlate of the cardinal symptom
of memory impairments (e.g., Mortimer et al., 2004).
Within the structures of the medial temporal lobe
mentioned, the typical neuropathological changes
associated with AD can be found even in the absence
of clinical symptoms (Braak and Braak, 1991). The
histopathological signs are neurofibrillary tangles
(NFT) and beta-amyloid plaques (AP) accompanied
by reductions of synaptic connections and neural
loss leading to a general brain volume loss (atrophy).
NFTs are believed to interfere with cytoskeleton in-
tegrity and probably result in neural dysfunction and
neuronal death. NFTs can also be found in healthy
Chapter 2: M. Brand and H.J. Markowitsch
aging brains, however, their density is significantly
higher in patients with AD (Braak and Braak, 1996).
NFTs are primarily located in limbic and paralimbic
regions, such as the hippocampus, the nucleus basa-
lis of Meynert within the basal forebrain, the amygda-
la and entorhinal cortex, and are linked to memory
dysfunctions in both patients with AD (e.g., Mortimer
et al., 2004) as well as individuals with mild cognitive
impairment (Petersen et al., 2006). In the course of
AD, high densities of NFTs are also found in neocorti-
cal areas, such as the parietal and the frontal lobes,
and are related to severity of dementia (Braak and
Braak, 1991; Braak and Braak, 1996). The distribution
of APs shows a high inter-individual variability. In ad-
dition, the density of APs is less intensively associated
with cognitive decline than that of NFTs (Mesulam,
1999). Recent review articles also emphasise addi-
tional pathological signs in AD, such as changes of
the density and the excitatory level of glutaminergic
NMDA-receptors (Wenk, 2006) and a higher level of
oxidative stress (Harman, 2006). Some authors also
propose that the appearance of NFTs and APs is not
closely related to developing dementia and that they
are rather the consequence than the causation of the
neurodegenerative process in AD. In addition, NFTs
and APs can be present relatively independently from
each other (Armstrong, 2006).
Medial temporal volume loss is found consist-
ently in patients with AD and a disease duration of
less than four years (since clinical diagnosis) indicat-
ing that these changes occur at an early stage in the
course of symptom progression. Beyond these char-
acteristic lesions, patients with AD also suffer from
frontal lobe damage primarily affecting the dorsola-
teral and orbitofrontal section, the basal forebrain
(Teipel et al., 2005) and the temporo-frontal junction
area (Salamon et al., 2004). The neocortical lesions
are considered the primary correlates of cognitive
impairment beyond memory disturbances, such as
language problems, deficits in problem solving and
other executive functions which can severely affect
activities of everyday life and also co-vary with symp-
toms of anosognosia (Kalbe et al., 2005; Marshall et
al., 2006; Salmon et al., 2006). Frontal lobe damage
26
can also occur at the early stages, but is less prominent
compared to the medial temporal lobe abnormalities
mentioned (Zakzanis et al., 2003). In addition, there
is consistent evidence that the amygdala and the su-
perior temporal gyrus are severely affected at an early
stage of AD (e.g., Galton et al., 2001; Basso et al., 2006).
In the course of the disease, volume loss can be
found in widespread brain regions including vari-
ous sub-cortical structures beyond the characteris-
tic cortical atrophy. Concerning sub-cortical lesions,
parts of the basal ganglia (i.e., putamen, globus pal-
lidus and caudate nucleus) are affected (Zakzanis et
al., 2003). However, effects on basal ganglia are less
severe than the volume loss of neocortical regions.
Tissue loss in parts of the thalamus was also found in
patients with Alzheimer’s disease, although this pa-
thology is not very specific as it is also found in other
neurodegenerative disorders.
The volume loss of the medial temporal lobe,
especially damage to the hippocampal formation as
mentioned above, is the most reliable measure in
differentiating between patients with AD at an early
stage and healthy individuals (e.g., Wang et al., 2003).
However, a recent study by van de Pol et al. (2005)
principally confirmed smaller hippocampal volume
in patients with AD compared to control subjects, al-
though the authors reported no differences between
patients with AD and patients with fronto-temporal
dementia (FTD). Comparable results concerning
hippocampal atrophy in patients with FTD were re-
ported previously (Frisoni et al., 1999; Boccardi et al.,
2003; but see also the study by Ibach et al., 2004, men-
tioned in Sect. 2.3). In addition, there is also evidence
for hippocampal damage in patients with semantic
dementia comparable with that found in AD (Galton
et al., 2001). Therefore, hippocampal volume loss is
less specific for AD than previously assumed, howev-
er, it is still the most prominent and most frequently
described pathology which is correlated with mem-
ory decline in patients with AD. In addition, a recent
study by Apostolova et al. (2006) indicated that those
patients with mild cognitive impairment and smaller
hippocampal volume have a higher risk to convert to
AD than patients with mild cognitive impairment and

normal hippocampal size. Although their samples of
patients were small and the time between the baseline
examination and the follow-up was only three years,
the authors reported significantly reduced volume of
the hippocampal formation, especially the CA1 region
and the subiculum, in the six patients who converted
from mild cognitive impairment to AD. The results
reported by Apostolova et al. (2006) principally repli-
cated earlier findings emphasising the rate of hippo-
campal atrophy as a key index for the conversion from
mild cognitive impairment to AD (e.g., Grundman et
al., 2002) and for the classification of healthy elderly
individuals, patients with mild cognitive impairment
and patients with AD (e.g., Convit et al., 1997).
Studies with 18F-2-fluoro-2-deoxy-D-glucose posi-
tron emission tomography (FDG-PET) which aimed to
reveal global functional alterations (measured by rest-
ing state glucose utilisation) of the demented brain in
patients with AD found consistently lower metabolic
rates throughout the cerebral cortex, especially sur-
rounding the temporo-parietal cortex (cf. Mosconi,
2005). Figure 1 demonstrates an FDG-PET result in
a patient with mild AD showing a pronounced hy-
pometabolism in temporal and parietal regions with a
dominance within the left hemisphere. FDG-PET can
differentiate between patients with AD and normal
healthy subjects at an early stage, when examinations
with magnetic resonance imaging (MRI) do not detect
structural differences in specific brain regions (Her-
holz, 1995; Herholz et al., 2002; Herholz, 2003). Global
dementia severity (e.g., measured with the Mini Men-
tal State Examination [MMSE], Folstein et al., 1975),
is also linked to glucose metabolism, primarily to the
Dementia and brain structures
metabolic changes in parietal, temporal and frontal
brain regions (Salmon et al., 2005). There are also var-
ious studies that found the FDG-PET method useful
for the differential diagnosis of AD and other types
of dementia as well as AD and mild cognitive impair-
ment (see the recent review by Mosconi, 2005).
On a neurochemical level, the cholinergic sys-
tem is considered to be severely affected in AD and
it might be one of the key systems involved in the
progression of memory decline. Previous studies
proposed that cholinergic depletion in structures of
the basal forebrain, primarily the basal nucleus of
Meynert, were characteristic for AD (Whitehouse et
al., 1982; Whitehouse, 1998). However, recent stud-
ies using functional imaging techniques showed that
cholinergic alterations can also occur in other brain
regions critically involved in memory processes, such
as the hippocampal formation and the cingulate
gyrus (e.g., Herholz et al., 2004; Goekoop et al., 2006).
In summary, AD co-varies with various structur-
al and functional brain changes, primarily affecting
limbic and paralimbic structures at an early stage of
the disease. Here, the hippocampal formation is the
main structure involved in dementia of the AD type.
However, the hippocampus is also involved in other
forms of dementias (see the paragraphs below). In
the course of the disease, further structural and func-
tional alterations occur. The abnormalities in the
parietal, the temporal and the frontal lobes are the
main neocortical correlates of the general cognitive
deterioration in patients with AD.
Fig. 1. An AD patient’s FDG-PET showing hy-
pometabolic zones (dark-grey) within the tem-
poro-parietal cortex and frontal lobe, primarily
on the left side. The patient suffered from mild
dementia (MMSE score = 22). We thank the
Max-Planck-Institute for Neurological Research,
Cologne, for the assignment of the figure
27
Chapter 2: M. Brand and H.J. Markowitsch
2.2 Primary brain correlates of Lewy body
dementia
Dementia with Lewy bodies (DLB) is considered the
second most common entity of neurodegenerative
dementias involving severe cognitive decline intense
enough to compromise activities of everyday life (cf.
McKeith et al., 1996; McKeith, 2004). However, in pa-
tients with DLB cognitive functioning is more fluctu-
ating than in patients with AD, and DLB is associated
with visual hallucinations and motor symptoms (Ge-
ser et al., 2005). The impairments in mobility and self-
care components of activities of daily living, presum-
ably linked to extrapyramidal dysfunctions, are also
stronger in DLB compared with AD (McKeith et al.,
2006). However, the differential diagnosis of AD and
DLB is difficult, because of the broad overlap of clini-
cal symptoms in these dementias.
Studies with structural imaging techniques (com-
puter tomography [CT] and MRI) aimed to reveal dif-
ferential neural correlates of DLB and AD but with-
out evidentiary results concerning regions that are
involved only in one of the two diseases (cf. Small,
2004). Considering global cerebral atrophy, several
studies found no significant differences between pa-
tients with AD and DLB – at best, slightly lower vol-
ume reductions in patients with DLB (e.g., O’Brian
et al., 2001). However, there is solid evidence for dif-
ferential involvement of the medial temporal lobe in
AD and DLB. For instance, Barber et al. (2000) found
less severe medial temporal lobe atrophy (includ-
ing atrophy of the hippocampal formation and the
amygdala) in patients with DLB compared to those
suffering from AD, when matched regarding global
dementia severity. However, both groups had smaller
medial temporal lobes than healthy elderly subjects
(see also the comparable results reported by Burton
et al., 2004; Tam et al., 2005).
Some authors hypothesised that the visual hal-
lucinations typically found in patients with DLB but
not in AD, may correlate with regional atrophy of the
occipital lobes. However, in the study by Middelkoop
et al. (2001), no specific differences were found be-
tween these two groups and normal individuals, and
28
occipital volume was not related to the presence of
hallucinations in these subjects. By contrast, Harding
et al. (2002) found a correlation between the density
of Lewy bodies within the temporal lobe and visual
hallucinations in patients with DLB. In their post
mortem study, they included a total of 63 brains with
Lewy bodies and documented clinical signs of DLB
(including descriptions of hallucinations, dementia
severity and cognitive fluctuation as well as clinical
response to levodopa therapy etc.). The authors re-
ported that the brains of cases with visual hallucina-
tions showed higher densities of Lewy bodies in the
amygdala and the parahippocampal gyrus but not in
the occipital lobes. The distribution of Lewy bodies in
the temporal lobe was, however, unrelated to cogni-
tive fluctuation and severity of dementia.
On the other hand, studies with functional im-
aging techniques (primarily PET) demonstrated hy-
pometabolism (or hypoperfusion in studies using sin-
gle photon emission computed tomography [SPECT],
respectively) of the occipital lobe in patients with DLB
compared to healthy individuals and – at least in some
studies – compared to patients with AD (e.g., Ishii et
al., 1998; Lobotesis et al., 2001; Okamura et al., 2001).
The hypometabolism of the occipital lobe might be
a critical correlate of hallucinations, as Imamura et
al. (1999) found an occipital hypometabolism in pa-
tients with DLB compared to patients with AD. The
hypometabolism was more pronounced in patients
with than in patients without hallucinations (see
also Higuchi et al., 2000). The primary sensorimotor
cortex is consistently described as being unaffected,
while the parietal and temporal cortex as well as the
prefrontal section of the frontal lobe show also meta-
bolic reductions. In addition to the changes of glucose
utilisation described above, some recent studies also
revealed specific alterations in dopamine functioning
in patients with DLB potentially distinguishable from
that found in patients with AD (Hu et al., 2000; review
in Herholz, 2003). There is also evidence for a cholin-
ergic involvement in the symptomatology of DLB
(Herholz et al., 2000), but this seems to be less specific
than the dopamine abnormalities described above.

2.3 Primary brain correlates of dementia with
fronto-temporal lobe degeneration
The term “fronto-temporal lobe degeneration” (FTLD)
appoints to a relatively heterogeneous category of
syndromes linked to atrophy of frontal and tempo-
ral regions. One typical form of dementia linked to
frontal abnormalities was formerly known as Pick’s
disease. Nowadays, three syndromes are subsumed
by the term FTLD: fronto-temporal dementia (FTD),
semantic dementia, and primary progressive aphasia
(Neary et al., 1998). Beyond the commonality of pri-
mary frontal abnormalities in these syndromes, they
differ regarding their neural correlates in detail. Re-
cently, Short et al. (2005) investigated potential dif-
ferential patterns of atrophy in patients with FTLD
and AD with respect to their clinical symptoms. They
found that patients with FTLD and problems in per-
sonal conduct (FTD patients) had a focus of atrophy
in the prefrontal cortex (bilaterally). In contrast, pa-
tients classified as suffering from semantic dementia
showed atrophy centred towards the left temporal
and both frontal lobes. This study emphasises that
the clinical presentation of patients suffering from
specific types of FTLD co-vary with differential pat-
terns of structural brain changes. The involvement
of the frontal lobes in symptoms of FTD was recently
confirmed by the study of McMurtray et al. (2006).
The authors examined behavioural measures and
perfusion rates using SPECT in a sample of 74 pa-
tients with probable FTD. The patients showed a
more pronounced right- relative to left-sided hypo-
perfusion which was correlated with apathy, loss of
insight, and further behavioural symptoms. The less
distinctive temporal hypoperfusion was linked to hy-
pomania-like tendencies. Although this study has a
number of limitations (e.g., the rather vague meas-
ure of functional abnormalities not allowing specific
conclusions about the relevance of small cortical or
subcortical regions), it emphasises the association
between frontal dysfunctions in patients with FTD
and their behavioural changes. The involvement of
the prefrontal cortex, in particular the orbitofron-
tal and the ventromedial prefrontal cortex, and ad-
Dementia and brain structures
ditionally the anterior cingulate gyrus in emotional
and behavioural deficits in patients with FTD was
also demonstrated by Peters et al. (2006).
However, there are also some studies that high-
light the similarities of the syndromes subsumed as
FTLD. For instance, Ibach et al. (2004) investigated
metabolic changes in patients with FTLD (including
patients with FTD, semantic dementia and primary
progressive aphasia) using FDG-PET in comparison
to glucose utilisation in patients with early AD. Five
regions were revealed showing significant differences
in glucose utilisation between FTLD and AD patients.
In four of them, namely the left insula, the left infe-
rior frontal gyrus, as well as the left and right medial
frontal gyrus, patients with FTLD had a lower meta-
bolism than the patients with AD. Only one region –
the right middle temporal gyrus – was more active
in patients with FTLD than in AD patients. Unfor-
tunately, the sample size of patients with FTLD was
too small to differentiate validly between the three
subtypes of FTLD. Nevertheless, the results from the
between-groups analyses demonstrate that the syn-
dromes subsumed as FTLD share some major neural
correlates that can be contrasted from those found
in patients with AD. However, there is also evidence
for a differential pattern of hypometabolism of fron-
tal and temporal regions in FTD relative to semantic
dementia. For instance, Diehl et al. (2004) examined
cerebral metabolic patterns of 25 patients with FTD
and nine with semantic dementia and contrasted
the results with the pattern of healthy participants.
They found a frontal hypometabolism sparing the
primary motor area in patients with FTD relative
to control subjects while the patients with seman-
tic dementia showed primarily left-sided tempo-
ral reduction of glucose utilisation compared with
healthy individuals. However, a direct comparison
of the metabolic patterns of the FTD patients and
those with semantic dementia was not performed.
Therefore, one cannot draw explicit conclusions
about shared neural patterns in FTD and semantic
dementia. Concerning different patterns of neural
atrophy in FTD, semantic dementia and progressive
aphasia, only a few studies compared these three
29
Chapter 2: M. Brand and H.J. Markowitsch

Table 1. Summary of characteristic FDG-PET findings in dementias (modified from Table 1 of Herholz, 2003).

Dementia
Alzheimer’s disease
dementia with Lewy bodies
fronto-temporal dementia
semantic dementia
primary progressive aphasia
subcortical ischemic vascular
dementia
Brain regions with decreased glucose utilisation (reduced FDG uptake)
hippocampal formation and surrounding structures of the medial temporal lobe
temporo-parietal association cortices
posterior cingulate gyrus and precuneus
frontolateral regions (at least partially)
primary and secondary visual cortex
temporo-parietal association cortices
posterior cingulate gyrus and precuneus
prefrontal cortex
predominantly medial frontal lobe,
also frontolateral and temporal regions
temporo-parietal regions
prefrontal cortex
temporal lobe
basal ganglia (nucleus caudatus), thalamus,
variably also cerebellum, sensorimotor region, occipital lobe

conditions directly. Therefore, results reported must
be seen as preliminary. However, while there is valid
evidence for an involvement of the frontal and – at
least partially – the lateral part of the temporal lobes
in all three subtypes of FTLD, hippocampal atrophy
is regarded as non-existent in primary progressive
aphasia and less severe in FTD relative to semantic
dementia (van de Pol et al., 2005).
In summary, the primary brain structures in-
volved in patients with FTLD are firstly frontal re-
gions (partially excluding the motor cortex) and
secondly the temporal lobes. For the behavioural
problems mainly occurring in patients with FTD, the
frontal abnormalities are the most dominant neural
correlate. For memory and language impairments
seen in patients with semantic dementia and primary
progressive aphasia, the (left) temporal lobe seems to
be critical. Table 1 summarises prominent functional
changes in dementias of different origin, as revealed
by FDG-PET.
2.4 Primary brain correlates of vascular
dementia
Vascular dementias imply various conditions of de-
mentia resulting from cerebrovascular disease. In ac-
cordance with the heterogeneous aetiologies of vas-
cular dementia, such as stroke, subcortical ischemia,
multiple micro-infarcts, and small vessel disease, the
potential brain lesions and functional changes vary
extensively. Within this chapter, we can only briefly
summarise some of the most important current find-
ings. A recent review can be found in Kalaria et al.
(2004). The most prevalent condition of vascular de-
mentias is the subcortical ischemic vascular disease
(SIVD) for which hypertension and diabetes are the
most relevant risk-factors. Patients with SIVD suf-
fer from executive dysfunctions, as one of the most
prominent neuropsychological impairments, beyond
memory and other cognitive deficits. On structural
MRI, a reduction of frontal white matter and atrophy
of parts of the basal ganglia (i.e., the caudate nucleus)
can be observed (Barber et al., 2002). Kerrouche et al.
(2006) compared functional brain abnormalities in
patients with SIVD and AD using FDG-PET. They re-
ported an overlap of hypometabolic zones in the two

30

patient groups affecting the posterior parietal cor-
tex, precuneus, retrosplenial cortex, lateral temporal
lobe, prefrontal regions, and the anterior section of
the hippocampal formation. However, in SIVD, meta-
bolic rates in basal ganglia, thalamus, cerebellum,
sensorimotor area, occipital lobe and further neocor-
tical regions were lower than in AD. In contrast, AD
was primarily associated with more pronounced hy-
pometabolism relative to SIVD in structures located
in the medial temporal lobe, in particular the anterior
hippocampus, the entorhinal, perirhinal, and tempo-
ropolar cortices. The authors conclude that the dif-
ferent patterns of hypometabolism in AD and SIVD
reflect the characteristic pathologies of the diseases
comprising a disconnection of the prefrontal cortex
from the basal ganglia and thalamus in SIVD in con-
trast to the medial temporal abnormality as the main
pathology in AD.
3 Summary
In the most common forms of dementia, widespread
brain regions are affected by structural and functional
pathologies. A common neural correlate of various
dementia conditions is an atrophy of the hippocam-
pal formation and surrounding structures of the me-
dial temporal lobe accompanied by a decrease of their
functional integrity. These pathologies are considered
the neural correlate for memory declines as one of the
cardinal symptoms of various dementias. Medial tem-
poral lesions and functional decline are the main pa-
thology of AD but can also occur in other dementias,
such as semantic dementia and FTD. Furthermore, in
several dementias structural and functional changes
of frontal regions also occur – or are the main patho-
logy, e.g., in FTD and LBD – compromising executive
functioning and causing behavioural abnormalities.
The functional imaging techniques are sensitive to
even minimal differences in brain functioning between
clinical groups and are therefore an important tool in
the diagnosis and differential diagnosis of dementia.
Dementia and brain structures
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Chapter 3
MEDICAL FACTORS INTERFERING WITH COMPETENCE IN DEMENTIA
Maria E. Soto and Bruno Vellas
1 Introduction
Alzheimer’s disease (AD) is an increasingly common
condition in older people with a median survival
duration from initial diagnosis of 4.2 years for men
and 5.7 for women (Larson et al., 2004) and it is re-
sponsible for 75% of all dementias. AD is character-
ised clinically by cognitive impairment, dominated
by memory complaints, which may be associated
with a syndrome of aphasia, apraxia and agnosia,
and disorders of executive function and judgement.
This global impairment leads to a progressively af-
fected competence in patient’s everyday life, initially
altering the more complex activities, such as working
(intellectual or physical skills), social activities or lei-
sure activities and finally the simple basic activities
such as eating, bathing or walking. Furthermore, the
natural course of the disease is also associated with
a number of specific complications such as behav-
ioural and psychological symptoms (BPSD), weight
loss, loss of functional autonomy, enhanced risk of
falls and injuries which accelerate the process of de-
pendence and the loss of quality of life. Any of these
complications can constitute a major burden both
to the patient and to the family (Nourhashemi et al.,
1997). Moreover, concomitant medical factors such
as hearing and vision impairment, infections or cere-
brovascular events could appear along the course of
the disease worsening its prognosis. All this requires
greater resources’ utilisation, both medical and non-
medical, representing a major public health problem.
At the present, the management of AD should not be
solely reduced to a specific pharmacological treat-
ment. This one should be contemplated as part of a
care plan which includes a regular follow-up with a
Comprehensive Geriatric Assessment, CGA (Ruben-
stein, 1984) carried out in all patients at the time of
the diagnosis and after, every six months during the
follow-up. The aim of the CGA in a regular follow-up
is to detect complications in order to treat them or
even prevent them. One of the essential aims of medi-
cal follow-up of Alzheimer’s patients and related dis-
orders is to preserve a satisfactory physical indepen-
dence and in consequence a better quality of life.
2 Physical impairment
Decline in physical autonomy is a major component
of symptoms in dementia. By definition, functional
impairment in dementia must be related to the cog-
nitive decline.
There are a number of other factors such as par-
kinsonism and co morbid disorders that by them-
selves may also contribute significantly to physical
disability. Furthermore, AD and other related disor-
ders are one of the main causes of dependency among
the older population (Aguero-Torres et al., 1998).
Activities of daily living (ADLs) are the activities
that are needed for self-care and independent living.
They include the basic activities of daily living (basic
ADLs) and the instrumental activities of daily liv-
ing (IADLs). Maintenance of performing the ADLs,
basic and instrumental, independently, known as
functional autonomy, is an essential concept in geri-
atric medicine. Among the older population, loss of
this function is a common manifestation of disease.
In fact, the loss of competence in different activities
such as the ability of shopping, managing money or
travelling might be the reflection of an executive and
Chapter 3: M.E. Soto and B. Vellas
memory dysfunction, and be the first signs of cogni-
tive decline. Recent disability of sewing or preparing
meals could be the result of praxis disorders. In ad-
dition, loss of functional competence has prognostic
connotations in treatment response, morbidity and
mortality and it is associated with an increase in hos-
pitalisation, institutionalisation, and the greater use
of health services and loss of economic self-sufficien-
cy (Fried et al., 1998). This is especially important in
older adults with dementia. Loss of functional auton-
omy leads to a progressive dependency that evolves
into a loss of quality of life, of both patient and the
family, and, loss of dignity.
2.1 Measurement of functional autonomy
Physical autonomy is a parameter easily to measure
by simple scales. Interviews are usually preferred to
performance-based tests. Functional scales have
been established in the geriatric literature and list-
ed as instruments used to assess physical function.
Some of these scales have been used in clinical tri-
als and there are others that are usually used in clini-
cal practice worldwide such as the Katz basic ADL
scale (Katz et al., 1963). The items of the Katz scale
are listed in Table 1, and are answered as “yes” or “no”
independently to perform. All of the Katz items are
basic-ADLs related and it is used to evaluate elderly
persons’ dependence in hospital, living in retirement
homes, or being cared for in their home. The instru-
mental activities of daily living are usually measured
in clinical practice by the Lawton IADL scale (Law-
ton, 1969) which items are listed in Table 2. It is readi-
ly apparent that IADLs are lost earlier in dementia,
whereas basic ADLs are lost in more advanced stages
of the disease. Basic- ADL’s functional abilities decline
also in a predictable temporal order according to the
complexity of the ADL: bathing, dressing, grooming,
toileting, walking, and eating.
The aim of using these tools to evaluate physi-
cal disability is not only to corroborate the demen-
tia diagnosis at the first visit. In fact they should be
used in every follow-up visit in order to (1) establish
36
Table 1. Items of the Katz basic ADL scale
• Bathing
• Dressing
• Toileting
• Transferring
• Continence
• Feeding
ADL: activities of daily living
Table 2. Items of the Lawton IADL scale
• Shopping
• Preparing meals
• Travelling
• Doing housework
• Doing laundry
• Using telephone
• Taking medications
• Managing money
IADL: instrumental activities of daily living
an objective in physical therapeutic (stimulation of
basic-ADLs and/or IADLs letting the patient perform
those activities in which he is still capable to, trying
to avoid failure situations), (2) to set up medical and
non-medical support at home which will be deter-
mined by the qualitative alteration of basic-ADL and
IADL scales and (3) to evaluate the severity and the
prognosis of the disease.
Continued participation in all ADLs is important
for the self-esteem of the individual with dementia.
IADLs should be simplified because the individual
with dementia may still be able to participate in some
steps but not in the entire activity. Supportive serv-
ices may allow an individual with dementia to con-
tinue living in his/her own home. However, a strategy
too “over protected” or restrictive could result in be-
havioural and psychological symptoms (BPSD) such
as depression, agitation or aggressiveness or in loss
of physical ability. But safety and stress induced by
these activities have to be considered. Thus, the di-
lemma of risk-benefits and safety-patient’s right and
autonomy is always present and needs to be periodi-
cally assessed.
Decreased ability to ambulate is usually seen at
the severe stages. Severe mobility problems arrive in
 Medical factors interfering with competence in dementia
all patients at the very end stage of the disease and
patients eventually become permanently bedridden.
Such a state is always accompanied by its own compli-
cations: pressure sores, infections, undernutrition, and
specific BPSD such as screaming. This later stage is
characterised by high morbidity, loss of quality of life,
and suffering, all of which also result in high medical
costs. Thus, it seems to be essential to maintain am-
bulatory ability for as long as possible. Ability to walk
can be promoted by a regular walking program and by
assistive devices such as Marry Walker (Trudeau et al.,
2003).
3 Balance and gait disorders and falls
In patients with Alzheimer’s disease, posture rap-
idly becomes impaired as a consequence of aging
(arthritis, impaired vision, muscle wasting, etc.) but
this may also be directly related to dementia or to
medication. Disturbances of equilibrium can lead
to numerous falls and fractures, or to abusive use of
restraints. Accidents are then even more frequent.
Balance disorders and falls have major psychological
consequences leading to anxiety and a feeling of inse-
curity. They can result in decreased physical activity
affecting competence in many areas as mentioned
previously, and in addition, in social skills with loss of
social contact, resulting in patient’s isolation
Patients with dementia experience greater im-
pairment of gait and balance and present an in-
creased frequency in falls in comparison to elderly
with normal cognition (Franssen et al., 1999). The es-
timation of annual incidence of falls in patients with
dementia varies between 70% and 85%. Patients with
dementia who experience falls are also at increased
risk for sustaining serious injury. The annual inci-
dence of fracture is approximately 7% in this patient
group, which is 1.5–3.0 times the rate in cognitively
normal fallers (Campbell et al., 1990). In addition, pa-
tients with dementia have a poorer prognosis once a
fall has occurred. They are less likely to make a good
functional recovery after significant injury, are five
times more likely to be institutionalised, and have a
higher mortality after hip fracture at one year than
non demented patients (Baker et al., 1978).
3.1 Causes of falls in AD patients
Falls in AD patients may have a multifactorial nature.
Many studies have identified AD as an independent
risk factor for falls (Jantti et al., 1995). Determining
the mechanisms by which AD increase the risk of falls
in elderly, however, has proved more difficult. The
major specific factors that have been implicated in
falls in patients with dementia are: postural instabil-
ity, medication, neurocardiovascular instability and
environmental factors. Concerning postural insta-
bility, older people display greater instability and an
abnormal gait pattern; visual acuity, propioception,
vestibular function, and reaction time contribute to
these abnormalities. Available evidence does suggest
that the more marked gait and balance abnormali-
ties in subjects with AD are attributable to disorders
with the central processing of information that is re-
quired to maintain postural instability (Chong et al.,
1999).
Psychotropic medication (especially antipsy-
chotics, benzodiazepines, tricyclic antidepressants,
anxiolytics, and hypnotics) have been associated with
a doubling of fall risk in patients with dementia by af-
fecting balance, reaction time, and other sensorimo-
tor functions or by causing orthostatic hypotension
as a side effect. Extrapyramidal side effects possibly
increase the risk of falls (Robbins et al., 1989). Most
of the association between psychotropic medication
and falls in AD patients could be explained by in-
creased prescription of these drugs for management
of agitation and wandering.
Neurocardiovascular instability refers to im-
paired cardiovascular regulation that is detected
clinically as orthostatic hypotension, vasovagal syn-
cope or carotid sinus hypersensitivity. Autonomic
dysfunction has been particularly demonstrated in
patients with AD, which suggests a theoretical reason
for an increased prevalence of orthostatic hypoten-
sion (Prettyman, 1998).
37
Chapter 3: M.E. Soto and B. Vellas
The role of the environment in AD patients with
falls is controversial, with some studies reporting an
association between falls and environmental hazards
in both the community and institutional care (Ruben-
stein et al., 1994) and others finding no association
(Tinetti et al., 1988). The limited evidence leaves the
contribution of the environment to falls in patients
with AD also not clear.
3.2 Balance disorders and falls management
In order to evaluate walking and alteration in gait and
balance the Tinetti test could be used. Several studies
have shown that preventing falls in older people who
do not have dementia is possible. A multifactorial ap-
proach that targets gait and balance, medications,
environmental risk factors, orthostatic hypotension
and physiotherapy are successful in preventing falls
(Wolf et al., 1996). Despite a significant risk of falls
and the attendant adverse consequences in patients
with AD, little research has been directed specifically
at the prevention of falls in this patient group. Physio-
therapy in subjects with dementia may have a role in
fall prevention. Thus, regular physical exercises could
be an important part of the systematic management
of patients with AD.
4 Weight loss
When he first described the disease in 1906, Alois
Alzheimer emphasised the occurrence of weight loss
in his patient. However, this weight loss has been
mistakenly considered as occurring at the late stages
of the disease. We now know that it can occur as soon
as the first symptoms of the disease appear.
The sooner the management strategy is set up,
the more effective it will be. Otherwise, we may rap-
idly find ourselves confronted with undernourished,
anorexic subjects, where there is very little room for
manoeuvre between doing nothing (often seen as
abandonment of treatment) or setting up enteral nu-
trition (which is then seen as artificial prolongation
38
of life), whereas early on, especially in subjects who
live alone at home, a visit from a home help will of-
ten be sufficient to assist these patients in doing their
shopping and preparing their meals. It therefore ap-
pears to be essential to assess the nutritional status
of each Alzheimer’s patient, particularly if he or she
lives alone or has only little family support.
The pathophysiological mechanisms of weight
loss are complex and have only partially been eluci-
date. The alteration of nutritional status may be
secondary to the inability to perform the activities
of daily living or to disturbances of eating behaviour.
In the severe stages of the disease, behavioural dis-
turbances and food disorders, e.g., refusal to eat and
wandering, are some of the most difficult complica-
tions of the disease for health practitioners to treat.
However, numerous studies have shown that weight
loss is observed in the course of the disease even when
the subjects still have a satisfactory energy intake.
Certain authors suggest that the atrophy of the inter-
nal temporal cortex or the effect of the e4 allele of the
apolipoprotein E may play a role in weight regulation
(Grundman et al., 1996; Vanhanen et al., 2001).
4.1 Consequences of weight loss
Clinical practice shows that weight loss is accompa-
nied by a variety of complications (decreased immu-
nity, infections, muscle atrophy, falls and fractures),
which affect the state of health and increases the risk
of institutionalisation and mortality. Involuntary loss
of muscle mass with aging, termed sarcopenia, is a
widespread condition in AD patients, associated with
a reduction in muscle strength and function which
gradually leads to impairment in the activities of dai-
ly living, progressive dependence and pressure sores.
Malnutrition itself would not affect directly any com-
petence, but its complications such as sarcopenia
and physical impairment would be responsible of af-
fecting many competences from advanced activities
of daily living (driving, sports, working) and IADL, in
a first time, and basic-ADL in an ultimate step (see
Tables 1 and 2).
 Medical factors interfering with competence in dementia
4.2 Assessment and management of
weight loss
The nutritional status of the elderly person can be
quickly and easily evaluated with the Mini Nutrition
Assessment (MNA). The MNA is the most validated
tool to assess nutritional status in older population.
It is also useful in Alzheimer’s patients. The MNA is
able to differentiate individuals with good nutrition-
al status (score > 23.5), with poor nutritional status
(< 17) or at risk of malnutrition (between 17 and 23.5)
(Vellas et al., 1999).
It is very important to assess weight regularly,
every six months, in AD patients, as well as assessing
their nutritional status with the MNA at least once
a year. If the patient has some relevant life event,
his/her nutritional status should be reassessed once
again. If the MNA score is less than 23.5, it is neces-
sary to look carefully at each MNA item to determine
where the patient loses points to be able to correct
the factors responsible for the altered nutritional
status. If the MNA is less than 17, the patient is more
likely already to present protein-caloric undernu-
trition and thus, a more intense strategy should be
set up. Caregiver education and/or with oral sup-
plementation have demonstrated to increase weight,
MNA score, and muscle mass in Alzheimer’s patients
(Lauque et al., 2004). It is essential to improve nutri-
tional intake as soon as possible, in the earliest stage
of an altered nutritional status, since once the pro-
tein-caloric undernutrition is established it is very
difficult to fight against it and its severe complications.
On the other hand, complications related to tube-feed-
ing are clearly more important than the benefit in the
very severely demented patients (Mitchell et al., 1997)
5 Other physical symptoms
Alzheimer’s disease is one of the causes of epilepsy
and cerebrovascular events in the elderly subject. Nu-
merous patients develop extrapyramidal symptoms.
Resting tremor is rarer than in idiopathic Parkinson’s
disease or in drug-induced striatal syndromes. On
the other hand, rigidity and bradykinesia or a “par-
kinsonian” gait are more frequent.
At a late stage of dementia, painful muscle and
joint contractures may develop, leading to a perma-
nently bedridden state. The value of passive mobi-
lisation of the joints to prevent those contractures
must be stressed.
Even though, visual and hearing impairment
are not direct complications of dementia, they are
important medical factors to assess and to correct,
when this is possible, since sensorial deficiency may
aggravate the disease prognostic and accelerate its
complications such as falls and physical decline.
6 Conclusions
With the aging of the population, Alzheimer’s disease
and related disorders has become a major public
health problem. Management of the disease should
not be only limited to a specific pharmacological
treatment. A global approach is needed to set up
through out a Comprehensive Geriatric Assessment
(CGA) which will also take into account other facets
of the disease, along with the cognitive one, such as
loss of independence, weight loss, falls or balance
disorders. Cognitive dysfunction (memory loss, syn-
drome of aphasia, apraxia and agnosia, and disor-
ders of executive function and judgement) are firstly
responsible for affecting competence both in intel-
lectual skills (e.g., the ability to fulfil one’s financial
obligations, to play chess or do crosswords, to work,
to plan a trip, to use a computer…) and in mainly
physical skills (e.g., the ability to do some sports, to
do housework or laundry, to get dressed or use the
toilet…). In addition, dementia complications such
as physical impairment, weight loss, falls and bal-
ance disorders, and parkinsonism may also affect
competence. The majority of these medical factors
affect competence by the resulting impaired mobility
mechanism. All competences affected interfere with
social, family and working lives.
CGA should be carried out in all patients at the
time of diagnosis and then every six months. The
39
Chapter 3: M.E. Soto and B. Vellas
concern of the clinician at the present time must be
to identify patients as early as possible in order to
rapidly set up a medical and non-medical interven-
tion strategy, with the essential aim of preserving
as long as possible satisfactory independence and,
thus, better quality of life for the patient and his/her
family.
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Aguero-Torres H, Fratiglioni L, Guo Z, Viitanem M, von Strauss
E, Winblad B (1998) Dementia is the major cause of func-
tional dependence in the elderly: 3-year follow-up data from
a population-based study. Am J Public Health 88: 1452–
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Baker BR, Duckworth T, Wiles E (1978) Mental state and other
prognostic factors in femoral fractures of the elderly. J R
Coll Gen Pract 28: 557–59
Campbell AJ, Borrie MJ, Spears GF, Jackson SL, Brown JS, Fitz-
gerald JL l (1990) Circumstances and consequences of falls
experienced by a community population 70 years and over
during a prospective study. Age and Aging 19: 136–41
Chong RKY, Horak FB, Frank J, Kaye J (1999) Sensory organiza-
tion for balance: specific deficits in Alzheimer’s but not in
Parkinson’s disease. J Gerontol 54A: M122–8
Franssen EH, Souren LEM, Torossian CL, Reisberg B (1999)
Equilibrium and limb coordination in mild cognitive im-
pairment and mild Alzheimer’s disease. J Am Geriatr Soc
47: 463–69
Fried LP, Kronmal RA, Newman AB, Bild DE, Mittelmark MB,
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Grundman M, Corey-Bloom J, Jernigan T, Archibald S, Thal LJ
(1996) Low body weight in Alzheimer’s disease is associ-
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Jantti PO, Pyykko I, Liappala P (1995) Prognosis of falls among
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Katz S, Ford AB, Moskowitz RW (1963) The index of ADL: A
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S, Cantet C, Vellas B (2004) Improvement of weight and
fat-free mass with oral supplementation in patients with
Alzheimer’s disease at risk of malnutrition: a prospective
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Nourhashemi F, Ousset PJ, Micas M (1997) Medical manage-
ment and non-cognitive aspects of Alzheimer’s disease.
Research and Practice in Alzheimer’s Disease 1: 233–48
Prettyman R (1998) Autonomic dysfunction in Alzheimer’s
disease. CNS 1: 20–22
Robbins AS, Rubenstein LZ, Josephson KR, Schulman BL, Os-
terweil D, Fine G (1989) Predictors of falls among elderly
people. Arch Int Med 149: 1628–33
Rubenstein LZ, Josephson KR, Wieland GD, English PA, Sayre
JA, Kane RL (1984) Effectiveness of a geriatric evaluation
unit. A randomised clinical trial. N Engl J Med 311: 1664–
70
Rubenstein LZ, Josephson KR, Robbins AS (1994) Falls in the
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Tinnetti ME, Speechley M, Ginter SF (1988) Risk factors for
falls among elderly persons living in the community. N Engl
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Chapter 4
DRUGS THAT AFFECT COMPETENCE
Conor O’Luanaigh and Brian Lawlor
1 Introduction
The elderly (over 65s) constitute 11.4 percent of the
Irish population yet receive 47% of all prescribed
medicines on the GMS (General Medical Services); it
is estimated that 32 items per year are prescribed per
elderly person (GMS Prescribing Data, 2000). Simi-
lar figures are seen across Europe. This is thought
to be due to the presence of multiple pathologies,
the increasing range of available medicines, inap-
propriate prescribing, lack of medication review and
an increased emphasis on preventative treatments
in older people. Polypharmacy is the norm not the
exception. A significant factor is repeat prescribing
particularly where older patients are not reviewed
regularly. Institutionalized patients tend to be on
an even larger number of drugs (Denham and Den-
ham, 1998). Self-medication with over the counter
(OTC) medicines or continued treatment for a previ-
ous condition that has resolved is also common and
can increase the risk of adverse events (Batty et al.,
1997).
Frequently many of these medications (both
prescribed and OTC) are psychotropics or drugs that
can have an effect on the central nervous system and
can adversely affect functioning and decision mak-
ing capacity. Drugs are one of the common risk fac-
tors for cognitive impairment and may be considered
the most easily reversible trigger. While delirium is
a multifactorial process it is estimated that medica-
tions alone may account for 12–39% of all cases. The
risk of inducing cognitive impairment is particularly
high in the frail elderly and those with a pre-existing
dementia. Polypharmacy itself is an independent risk
factor for causing drug induced confusion/delirium
(Martin et al., 2000). In addition to polypharmacy,
altered pharmacokinetics and pharmacodynamics
seen with aging, and associated co-morbid diseases
have an additive or synergistic role with drugs in
causing acute confusion/delirium or worsening cog-
nitive impairment.
This chapter will review the types and classes of
drugs that can affect cognition and thus as a result
alter the person’s competence or mental capacity to
make decisions and function independently.
2 Competence/capacity
There is no single definition of competence that is
universally accepted. Competence is not only a legal
norm and medical determination, it is also a societal
construct designed either to empower or to restrict
the rights of persons for particular purposes. It is
not an all or one phenomenon and it can be lost and
subsequently regained as can be the case when an in-
dividual develops a delirium and loses capacity but
regains it on resolution of the delirium. The US Presi-
dent’s Commission (President’s Commission for the
Study of Ethical Problems in Medicine and Biomedi-
cal and Behavioural Research, 1982) recommended
that persons be considered competent if
• they are capable of communicating pertinent in-
formation,
• they possess a set of values and goals,
• they have the ability to reason about choices.
The failure to identify decision options (where they ex-
ist) and the inability to understand the consequences
Chapter 4: C. O’Luanaigh and B. Lawlor

of those options have been found to be strong indica- the different cognitive functions that determine com-
tors of incapacity (Silberfield, 1994). petence. This can allow us therefore to see how differ-
However in understanding and assessing compe- ent drug groups can affect areas of cognition and thus
tency, it can be helpful also to further define it through competence (see Fig. 1). The ability to understand and

Fig. 1. Drugs that affect competence

42

Table 1
Drugs that adversely effect cognition
• Tricyclic antidepressants, – amitriptyline, imipramine
• Antiparkinsonian agents, – procyclidine, benztropine, etc.
• 1st generation antihistamines, – chlorpheniramine, diphe-
nyhydramine etc.
• Antispasmodics – hyoscine, oxybutynin
• Antinauseants such as scopolamine
• Antiarrhythmics such as disopyramide
• Benzodiazepines
• Opiates, -morphine, codeine
• Quinolone antibiotics
• Lithium, digoxin
• Alcohol
• Corticosteroids
• Diuretics
• Antipsychotics
be aware of situations and choices is related to execu-
tive functioning and memory. The ability to appreciate
future implications of decisions or choices relates to ex-
ecutive functioning. Disordered attentional processing
and receptive and expressive dysphasia preclude simple
choice. Therefore when assessing for competence it is
vital to assess the cognitive domains of attention, mem-
ory, language and frontal/executive function. Different
drugs can affect these various domains and thus impair
competence, for example anticholinergics can affect
both memory and attention, while antipsychotics can
affect frontal/executive function.
Drugs that affect competence
Putative mechanism
Anticholinergic action affects attention and memory.
as above
as above
as above
as above
as above
CNS depressant affects arousal, attention, reaction time and
episodic memory
CNS depressant, affects arousal inhibition of neuronal Na+
K+ATPas. Codeine has anticholinergic action.
NMDA agonists, GABA-A antagonist
Drug toxicity due to reduced renal clearance. Lithium affects
attentional processing
CNS depressant- intoxication causing sedation and attentional
difficulties. Chronic use can cause an amnestic syndrome
affecting episodic memory as well as impairing executive
function and judgement.
Enhancement of NMDA receptor activity, can affect declara-
tive memory
Dehydration with electrolyte disturbances possibly impairing
attention.
Frontal-striatal dopamine blockade affecting attention and
executive function
3 Medications associated with adverse effects
on cognition
Many groups of drugs can have effects on memory and
cause cognitive impairment. Table 1 shows some of
the commoner types and the mechanisms of action.
As well as prescribed drugs, over the counter,
complementary/alternative, or illicit products can all
have an effect on cognition which can impair compe-
tence. The most common drugs that can affect cog-
nition include anticholinergic medications, benzodi-
azepines and narcotics. Other medications in toxic
doses can also cause cognitive impairment.
43
Chapter 4: C. O’Luanaigh and B. Lawlor
In this section, we review the more common
classes of drugs that can adversely affect different ar-
eas of cognition. However it is important to make the
following generalization before describing each class
of drugs in detail: Differences between effects of dif-
ferent drugs may be caused by several variables such
as dose, route of administration and bioavailability of
the drug. For example a high dose versus a low dose
of alcohol may have different effects on cognition
(Zuccala et al., 2001).
3.1 Anticholinergic drugs
The studies of Deutsch (1971) have documented a
clear role for cholinergic transmission in memory
and attention. Clinical studies with the central mus-
carinic antagonist, scopolamine, provide evidence for
the involvement of the cholinergic system in memory
and learning (Drachman and Leavitt, 1974). These
have shown that an antagonist like scopolamine can
transiently impair performance on a variety of mem-
ory tasks, including episodic memory and retrieval
and access to semantic memory. Scopolamine affects
the learning of new information; immediate recall on
digit span is not affected but the storage of new mem-
ories is disrupted as shown by testing on “supraspan”
sequences (Drachman and Leavitt, 1974). Most stud-
ies suggest that scopolamine can interfere with the
acquisition and storage of new information (Ghone-
im and Mewaldt, 1975; Peterson, 1977; Ghoneim and
Mewaldt, 1977; Safer and Allen, 1971). It also appears
that anticholinergic agents can disrupt the retrieval
process from knowledge memory (Drachman and
Leavitt 1974; Wolkowitz et al., 1985). These deficits
can be partially reversed by the administration of
physostigmine, a cholinesterase inhibitor, suggesting
the effects of scopolamine on memory are specific to
the cholinergic system.
Anticholinergic activity is also associated with
the occurrence and severity of delirium, and recent
studies by Flacker et al. (1998), have shown an as-
sociation between higher serum anticholinergic ac-
tivity and a greater severity in delirium. Quite apart
44
from specific anticholinergic medications such as
procyclidine or trihexyphenidyl many other medica-
tions have anticholinergic properties that can cause
impaired cognition. Tricyclic antidepressants have a
significant anticholinergic effect and are well known
causes of delirium.
However quite apart from delirium, tricyclics
such as amitriptyline can have an effect on cognition
so as to affect competence to drive. Studies by Ram-
aekers (2003) and Veldhuijzen (2006) have shown
that amitriptyline and imipramine can cause driving
impairment for up to one to two weeks after initia-
tion of treatment at which time driving performance
returned to normal. Many of the older antihistamines
all have potent anticholinergic effects and can cause
cognitive impairment, as can painkillers such as
pethidine which is converted to an anticholinergic
metabolite which can cross the blood brain barrier
and affect cognition.
3.2 Benzodiazepines
The cognitive effects of acute benzodiazepine ad-
ministration have been well documented in humans
(Lister, 1985). The best-documented cognitive effect
of benzodiazepines has been anterograde amnesia
(Wolkowitz et al., 1987). The time of onset and du-
ration of this effect varies according to the benzo-
diazepine used, but the effect can last more than 6
hours. Although they disrupt the encoding and con-
solidating phase of learning, benzodiazepines have
not been found to affect immediate recall and access
to previously acquired information. Sedative effects
also accompany the amnestic effects of these drugs.
These sedative effects can obviously impact on the
perceptual processes of the patient and interfere with
the ability of the patient to pay attention to a stimu-
lus, thus directly affecting the person’s competence.
The pattern of memory impairment produced
by benzodiazepines is different from that produced
by anticholinergic agents. In contrast to the anti-
cholinergic agents, benzodiazepines do not interfere
with previously learned information (Peterson and

Ghoneim, 1980). Benzodiazepines have more selec-
tive disruptive effect on episodic memory, so the en-
coding of new memories is especially impaired. This
type of memory impairment most closely resembles
that of the alcoholic amnestic syndrome. Busto et al.
(2001) found that 53% of seniors had used a sedative
hypnotic in the past year. Seventeen percent used
over the counter sedatives while 83% were using
prescription medications. These findings show that
benzodiazepine use is quite widespread amongst the
elderly and thus can be a common cause of impaired
cognition. Confusion and cognitive impairment sec-
ondary to benzodiazepines is most commonly seen
with medium to long acting benzodiazepines such as
clonazepam and diazepam. One must also be mindful
that abrupt withdrawal of such drugs can also trigger
a delirium that would impair competence
3.3 Alcohol
Community based studies in older people have estimat-
ed the prevalence of alcohol misuse or dependence as
2–4%, (Adams and Cox, 1995) with much higher rates
of 17% (men) and 7% (women) when less stringent cri-
teria such as excessive alcohol consumption are used
(UK National Digital Archive of Datasets, 1994). For
hospital based studies, the same difficulties abound as
the definitions for alcohol use disorders are not clear-
ly specified in many studies. In general, however, the
prevalence for elderly inpatients is higher than for eld-
erly people in the community, with estimates of 14%
for patients in emergency departments, 18% for medi-
cal inpatients, and 23–44% for psychiatric inpatients
(Goldstein et al., 1996). Among elderly people, socio-
demographic factors associated with alcohol use dis-
orders include being male (Saunders et al., 1991; Iliffe
et al., 1991) socially isolated (Bristow and Clare, 1992)
single, (Bristow and Clare, 1992; Ganry et al., 2000) and
separated or divorced (Ekerdt et al., 1989).
Many studies have documented cognitive im-
pairment in response to the consumption of alcohol-
containing beverages (Parsons et al., 1987). Many of
these studies suggest that alcohol when given acutely,
Drugs that affect competence
primarily affects the acquisition of new information
rather than the retrieval of previously learned mate-
rial (Rosen and Lee, 1976; Birnbaum and Parker, 1977;
Hashtroudi et al., 1983; Williams and Rundell, 1984).
If information is presented to the subjects while they
are in an intoxicated state, their ability to recall a
series of events is markedly impaired, regardless of
whether retrieval takes place when subjects are sober
or intoxicated. Subjects may show alcohol-induced
impairments in acquisition of new information for
several reasons. Intoxicated subjects may not per-
ceive the incoming stimuli as well as sober subjects.
Furthermore, intoxicated subjects may not attend to
the stimuli, or may not process and encode informa-
tion efficiently. Alcohol may also produce disruption
in attention. Since learning impairment have been
associated with decreases in arousal and alcohol pos-
sesses CNS depressant properties, it is possible that
the effect of ethanol on cognition could be mediated
in part by its sedative effects.
As well as the deleterious effects of alcohol in-
toxication on cognition and capacity, acute alcohol
withdrawal can result in a withdrawal state, which
obviously has a huge impact on patient’s capacity.
Quite apart from the acute effects of alcohol (intoxi-
cation and sudden withdrawal), chronic abuse of al-
cohol can lead to an amnestic syndrome known as
Korsakoff ’s syndrome. The main area of memory af-
fected is the ability to learn new information. Usually,
intelligence and memory for past events is relatively
unaffected, so that an individual may remember what
occurred 20 years previously, but is unable to remem-
ber what occurred 20 minutes ago. This memory de-
fect is referred to as anterograde amnesia. In essence
these patients cannot consolidate or remember re-
cent events and thus are prone to confabulation.
3.4 Antipsychotics
Antipsychotic drugs can be of modest benefit in the
treatment of certain behavioural problems in demen-
tia although their use can be limited due to increased
risk for cerebrovascular events and increased mor-
45
Chapter 4: C. O’Luanaigh and B. Lawlor
tality rates (Schneider et al., 2006). In patients with
schizophrenia, treatment with atypical antipsychot-
ics has shown benefits in cognition in particular in
the areas of attention and executive function (Melt-
zer and McGurk, 1999).
However use of antipsychotics in patients with
dementia is thought to impair cognition in these
patients. Certain antipsychotics such as chlorpro-
mazine have a significant anticholinergic effect and
as mentioned already this can have an effect on at-
tention and memory. Other antipsychotics such as
haloperidol, (which has little or no anticholinergic ef-
fect) has been shown by Devenand et al to also cause
a decline in cognitive functioning in patients with
Alzheimer’s disease (Devenand et al., 1989). Cross
sectional studies have also shown that patients with
dementia who take antipsychotics have worse cog-
nitive function than those who do not (Brown et al.,
1993). More recently a 2 year longitudinal prospective
study by McShane et al. (McShane et al., 1997) which
looked at how typical antipsychotics affect cognition
in dementia, showed that the mean decline in cogni-
tive score in those who took antipsychotics was twice
that of patients who did not. The antipsychotic medi-
cations that were used in this study were, haloperi-
dol, chlorpromazine, thioridazine and promazine. In
the most recent study which looked at atypical an-
tipsychotics and cognition, Ballard et al carried out
a randomized double blind placebo controlled trial
in which they compared the atypical antipsychotic –
quetiapine with rivastigmine and a placebo (Ballard
et al., 2005). They found significant greater cognitive
decline in the group taking quetiapine compared to
placebo. In a recent meta-analysis looking at the ef-
ficacy and adverse effects of atypical antipsychotics
for dementia (Schneider et al., 2006), it was found
that cognitive scores worsened for all drugs included
in the review (olanzapine, quetiapine, risperidone
and aripiprazole). The exact areas of cognition that
are impaired as a result of antipsychotics are not fully
established but thought to be related to impaired at-
tention and possibly increased sedation in the case
of quetiapine. Therefore prudent use of antipsychot-
ics in patients with dementia is advised paying par-
46
ticular attention to avoid use of antipsychotics with a
high anticholinergic effect.
4 Medications with potential beneficial effects
on cognition
Having looked at the various drugs that can adversely
affect cognition we are now going to look at drugs
that may have beneficial effects on cognition and
thus improve or help maintain capacity.
4.1 New generation antidepressants
As mentioned earlier certain older tricyclic antide-
pressants can have a significant effect on memory
due to their potent anticholinergic effects. This has
led to increased prescribing of SSRI’s in the elderly.
However what of the potential beneficial effects of
SSRI’s on cognition and thus competence? Previous
studies have shown that the serotonergic system is
affected in Alzheimer’s disease (Azmitia, 1978). Not
only is brain serotonin content and uptake reduced,
but serotonergic cell density in the raphe nuclei is
also reduced (Arai et al., 1984; Carlsson et al., 1980;
Sparks et al., 1986; Mann and Yates, 1983; Yamamoto
and Hirano, 1985). However no studies to date have
demonstrated a clear direct beneficial effect on cog-
nition with use of SSRI’s in patients with Alzheimer’s
disease.
Of note however there have been some com-
parison studies of sertraline and nortriptyline in the
treatment of major depression in the elderly (Finkel
et al., 1999; Bondareff et al., 2000). These have shown
some cognitive benefits in the groups taking sertra-
line as opposed to the group taking nortriptyline,
independent of the antidepressant effects of the in-
dividual drugs. The exact mechanisms as to why this
might be the case has yet to be discovered and more
research is required to elucidate this. A more recent
study looked at reboxetine and its effects on cogni-
tive functioning in depressed patients as compared
to paroxetine and placebo. Reboxetine is a selective

noradrenaline reuptake inhibitor with proven effica-
cy in depression. In this double blind placebo and ac-
tive treatment controlled study, it was found that the
group taking reboxetine had significantly improved
cognitive scores in the domain of attention compared
to paroxetine and placebo (Ferguson et al., 2003).
4.2 Cholinesterase inhibitors
Since the introduction of the first cholinesterase in-
hibitor in 1997, most clinicians and probably most pa-
tients would consider the cholinergic drugs, donepe-
zil, galantamine and rivastigmine, to be the first line
pharmacotherapy for mild to moderate Alzheimer’s
disease. The drugs have slightly different pharmaco-
logical properties, but they all work by inhibiting the
breakdown of acetylcholine, by blocking the enzyme
acetylcholinesterase.
Many studies have been carried out on these
drugs and they have consistently been shown to be
effective and well tolerated (Gauthier et al., 2002;
Boada-Rovira et al., 2004). More recently a Cochrane
systematic review by Birks et al. (2006) has been car-
ried out in which they reviewed all unconfounded,
blinded, randomized trials in which treatment of a
cholinesterase inhibitor was compared with placebo.
In this review he found that treatment for periods of 6
months and one year with one of the cholinesterase in-
hibitors at the recommended dose produced improve-
ments in cognitive function, on average – 2.7 points
(97% CI –3.0 to –2.3) in the midrange of the ADAS-Cog
scale. No significant differences in efficacy were found
between the different cholinesterase inhibitors. In a
nutshell this review along with all the studies carried
out previously, consistently show that these drugs can
have a mild but significant beneficial effect on cogni-
tion in people with Alzheimer’s disease. This is all the
more important in a clinical setting where maintaining
or improving cognition even if just for a relatively short
period can help maintain the person’s ability to make
decisions about their wellbeing and other issues.
Drugs that affect competence
4.3 Dopamine agonists
Human postmortem and animal experimental stu-
dies have all suggested a decline of the cerebral
dopaminergic neuronal system with age (de Keyser
et al., 1990a,b; Misra et al., 1980). In more recent years
studies have looked at the effect of age on dopamine
receptors in normal human brain measured by posi-
tron emission tomography (PET scans), and these
have also confirmed a decrease in D2 dopamine re-
ceptor binding as a consequence of normal ageing in
parallel with the decline of the presynaptic nigrostri-
atal dopaminergic neuronal system (Antonini et al.,
1993). Further studies have been carried out looking
at the possible association between decline in brain
dopamine activity with age and cognitive impair-
ment. One such study by Volkow et al. (1998) con-
cluded that age-related decreases in brain dopamine
activity contributes to impaired performance on
tasks that involve frontal brain regions as well as be-
ing associated with a decline in motor performance
(Volkow et al., 1998). It suggested too that interven-
tions that enhance dopamine activity may improve
performance and quality of life in elderly.
Following on from these studies trials have
looked at the efficacy of dopamine agonists in rela-
tion to improved cognition. The dopamine agonist
piribedil has been tested against placebo in healthy
elderly volunteers in one randomized double blind
trial (Peretti et al., 2004). The group receiving pir-
ibedil showed a beneficial effect on the acquisition
of a problem-solving routine, and as such it was
concluded that piribedil is likely to enhance cogni-
tive-skill learning in healthy older adults. In another
interesting study by Dindagur and Sivaramakrishnan
(2001), they investigated whether piribedil improves
cognitive function in patients with mild cognitive
impairment. Again this study found that the group
taking piribedil had significant increases in MMSE
scores.
In patients who have cognitive decline as a re-
sult of Parkinson’s disease, some short-term im-
provement in many cognitive tasks is obtained with
use of dopamine agonists (Kulisevsky et al., 2000).
47
Chapter 4: C. O’Luanaigh and B. Lawlor
Although, it appears too from another study looking
at dopamine agonists in patients with Parkinson’s
disease that the agonists influence cognition accord-
ing to the receptors which they act upon (Brusa et
al., 2005). Specifically the D2/D3 agonist pramiprex-
ole appeared to significantly worsen verbal fluency,
short-term memory and attentional-executive func-
tions in comparison to l-dopa and pergolide both of
which stimulate D1 and D2 receptors.
In summary, age related dopamine decline plays
a role in cognitive impairment in the elderly, however
how significant this is in patients with Alzheimer’s de-
mentia is unclear. Further studies testing tolerability
and efficacy in patients with Alzheimer’s, as an adjunc-
tive treatment as are warranted. However in patients
with Parkinson’s disease with cognitive impairment
and possibly also Parkinson’s dementia one could con-
sider dopamine agonist treatment as an adjunctive
treatment for cognition to rivastigmine, which is al-
ready approved for use in Parkinson’s disease demen-
tia in the EU.
5 Conclusions
Assessing for competence or capacity is an impor-
tant role of the physician in the management of pa-
tients with dementia. Capacity involves a number of
cognitive domains, all of which have to be assessed to
determine competence. The frail elderly and people
with a pre-existing dementia are especially vulner-
able to drug induced cognitive impairment which
will adversely affect their competence and abilities.
In this chapter we have looked at some of the more
common drug classes that can have an effect on cog-
nition and the different mechanisms that underpin
their effects. Altered pharmacodynamics and phar-
macokinetics as well as polypharmacy all increase
the likelihood that cognitive impairments secondary
to drugs can occur. As can be seen from box 1, a wide
variety of drugs can affect cognition and therefore
it is imperative for doctors to have a low threshold
for suspecting drug-induced cognitive impairments.
However it is equally important to be aware of drugs
48
that can potentially beneficially affect cognition and
as a consequence help to maintain competence and
function.
Key points
• Polypharmacy plays a significant role in impair-
ing cognition and function in older people.
• Cognitive determinants of competence include
memory, attention, executive function and lan-
guage.
• Different drug classes can alter cognition and
competence in different ways.
• Anticholinergic drugs impair episodic memory
as well as impairing retrieval and access to se-
mantic memory.
• Benzodiazepines impair attentional processes
through their sedative effects, but also impair
encoding of new memories. They do not impair
previously learned information.
• Always consider alcohol as a potential cause of
cognitive impairment either through its acute or
chronic effects.
• Exercise caution with regards to the use of anti-
psychotics in patients with dementia as these
can worsen cognition.
• Cholinesterase inhibitors can stabilize cognition,
function and maintain competence in Alzhei-
mer’s disease and Parkinson’s disease dementia.
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Chapter 5
WHO DECIDES WHO DECIDES? ETHICAL PERSPECTIVES
ON CAPACITY AND DECISION-MAKING
Deborah Bowman
“Illness is not something a person has; it’s another way of being”
1 Introduction
Capacity1 is at the heart of ethical decision making in
healthcare. For those who subscribe to a principled
approach to moral reasoning (Gillon, 1985; Gillon
and Lloyd, 1993; Beauchamp and Childress, 1994),
autonomy is often said to be pre-eminent amongst
the four principles of medical ethics2, or at least “first
amongst equals” (Gillon, 2003). For those who prefer
methods of ethical analysis other than the influential
“four principles” approach, there remains a funda-
mental assumption that self-determination is afford-
ed moral value and priority (Campbell, 2003; Harris,
2003; Cowley, 2005). To deny a capacitous person
the freedom to make decisions about his or her own
treatment and healthcare is fundamentally unethical
1
I use the term “capacity” as it has become the common-
est term in the UK for describing a person’s ability to make
decisions about their care and has been incorporated into
legislation, namely the Mental Capacity Act 2005. Readers
may also be familiar with the synonymous term “compe-
tence”. Furthermore, I am concerned with the capacity to
make healthcare decisions. In the UK, capacity is also vari-
ously assessed for diverse non-medical purposes including
financial decisions, probate and contractual law, electoral
rights and personal relationships.
2
The four principles are autonomy, beneficence, non-ma-
leficence and justice. The “four principles” approach is a
model of ethical analysis that has been remarkably influen-
tial, if not universally embraced amongst ethicists.
Jonathan Miller “The Body in Question”
whether one attributes the moral precept for such a
conclusion to autonomy or virtuous practice or re-
spect for others. Conversely, where a person lacks the
capacity to make decisions, healthcare professionals
have a responsibility to protect his or her interests3.
It is remarkably easy to acknowledge the sense of the
preceding statements; however, they belie the moral
complexity of assessing capacity implying a satisfying
but artificial binary certainty in which ethical prac-
tice constitutes an informed choice by the profes-
sional between affording his patient full entitlement
to make his or her own decisions or acts without
reference to the patient’s preferences because he or
she has not met the demands of the “test” of capacity.
Such moral simplicity is seductive, perhaps particu-
larly to the busy and overworked clinician, but it is a
simplicity that is illusory because it disregards three
important aspects of what it means to assess capac-
ity ethically.
First, capacity is not an “all or nothing” construct
but a fluctuating concept. In practice, patients may
3
Although, of course, embedded in the almost casual asser-
tion about protection of interests are multiple and complex
value and moral judgements, e.g. are “interests” biomedical,
social, psychological? What qualifies a professional trained
in a particular discipline to speculate about a stranger’s
social preferences and therefore “interests”? If biomedical
and broader interests collide, who should decide what best
constitutes protection of interests?
Chapter 5: D. Bowman
be somewhere along a continuum of capacity and
this may vary enormously depending on external fac-
tors. Ethical practice therefore demands attention to
those influential variables that may diminish, alter
or enhance a patient’s capacity. If, and I assume most
readers agree, there is moral value in self-determina-
tion, it is ethical to maximise the chances that patients
have the opportunity to express their preferences. In-
deed, it is argued that it is not merely “nice” to aspire to
be alert to variables that affect a patient’s capacity, but
it is a duty for healthcare professionals to be so alert.
Ways in which healthcare professionals might influ-
ence a patient’s capacity are discussed post.
Second, if capacity is not something that patients
either do or do not have then it is likely that many pa-
tients whom professionals meet in their work will be in
a grey hinterland where they may sometimes or even
only occasionally be capacitous to decide about some
things. The healthcare professional must then engage
with the moral challenge of those patients who hover
uncertainly in an ethico-legal hinterland in which ca-
pacity may be fleetingly, perhaps even tantalisingly,
present or may be just out of grasp. For professionals
who work with people who have dementia this group
of people may form the majority of their case load, so
to focus solely on assessing capacity as the moral en-
deavour at hand, may well be to focus on the wrong
moral problem. The more apposite moral challenge is
to practise ethically in respect of those who may only
be sometimes, rarely or never capacitous.
Finally, it is too readily assumed that autonomy,
or perhaps more accurately a particularly narrow
interpretation of autonomy (Clement, 1998; Agich,
2003), is the natural ethical antecedent of capacity
thereby necessarily elevating the assessment of ca-
pacity to disproportionate status. If, however, one
considers the moral foundations of decision-mak-
ing more imaginatively and is alert to other ethical
models such as virtue ethics (Macintyre, 1985; Toon,
2002; Gardiner, 2003) in which respect is embedded
(Campbell, 2003), feminist and communitarian eth-
ics in which professional ethics are reinterpreted to
focus on equality and individuality (Larabee, 1993;
Tong, 1997; Clement, 1998) or the ethics of care (Nod-
52
dings, 2003) the possibilities of interacting ethically
with the person of impaired or reduced cognition are
much greater, and it is argued, more relevant than
a quasi–fetishistic preoccupation with attaining ca-
pacitous status.
This chapter then focuses on three under-ex-
plored but potentially valuable dimensions to fa-
cilitating ethical decision-making with patients in
whom a dementing process has begun, namely (i) the
power of professionals to influence capacity and the
concomitant responsibility to enhance rather than
diminish capacity; (ii) the value of scrutinising the
ethical basis of capacity and decision-making to ex-
tend the analysis beyond the restricting boundaries
of conventional interpretations of autonomy; and (iii)
the alternatives to capacity as the sole means of fa-
cilitating self-determination.
2 An ethical gift: the power and responsibility
of the professional in facilitating capacity
Although one of the central tenets of this chapter is
that to concentrate exclusively on “capacity” is to fo-
cus on the wrong moral challenge when aspiring to
ethical practice, it is unsurprising that the assessment
of capacity is such an important clinical skill. The first
ethical question therefore might be to consider what
the “virtuous” healthcare professional(s) and team(s)
would have to ensure to maximise ethical practice
(Toon, 2002; 2007). What is the mixture of phronesis
or “practical wisdom” and qualities to which the pro-
fessional should aspire in assessing capacity?
Capacity is a legal construct4 that determines
whether a person is afforded rights, choices and
freedoms by healthcare professionals. Therefore, the
4
Although capacity will rarely, if ever, be assessed without
clinical input, it remains a legal rather than a medical con-
cept, i.e., in the UK its definition is drawn from the com-
mon law per J. Thorpe in Re: C (Adult: Refusal of Treatment)
The Mental Capacity Act 2005 has largely adopted the com-
mon law test for assessing capacity save for the confusing
“belief ” criterion.
 Who decides who decides? Ethical perspectives on capacity and decision-making
process of assessing5 whether or not someone is ca-
pacitous equates to the bestowal or denial of legal
privileges. As such, the professional engaged in as-
sessing a person’s capacity should reflect on what it
might mean to be “virtuous” in this context. Indeed,
to borrow from two writers who have offered the
somewhat old-fashioned term “conscience” as an al-
ternative to the sometimes limiting language of med-
ical ethics (Hughes and Baldwin, 2006), what might
the “conscience” of healthcare professionals charged
with helping patients with dementia make decisions
demand? Respect for persons, honesty, beneficence
and equity are likely to be uncontroversial precepts
by which to practise but what does that mean in rela-
tion to assessing capacity?
First, no professional should engage in an assess-
ment of a patient’s capacity without understanding
the relevant legal framework in his or her jurisdic-
tion (British Medical Association and The Law So-
ciety, 1995). Indeed, so ambiguous is the language
of assessing capacity, that some have sought to dis-
tinguish between separate legal terminology and
“bioethical” terminology as a means of differentiat-
ing lawful practice from ethical practice (Schneider
and Bramstedt, 2006). Therefore a basic but funda-
mental stage in “virtuous practice” is to ensure that
all members of the team are talking about the same
task when discussing or engaging in assessments of
capacity. If, as is likely to be the case when working
with people of impaired cognition, lucidity is variable
and expressions of preference confusing, it is essen-
tial to maximise the chances of everyone in the team
contributing to an optimal assessment of capacity.
Given the importance of the task and the conse-
quences of a determination of capacity for a person’s
self-determination, it should be a common goal for
all staff to facilitate rather than impede capacity. For
if assessment of capacity is not a single, irrevocable
and static judgement, each member of the team may
5
Although it is important to note that in the UK, adults are
presumed to be capacitous and an assessment should only
be conducted where there is legitimate doubt about a pa-
tient’s decision-making capacity.
bring a piece to the self-determination jigsaw. What
does this mean in practice? First, professionals must
be wary of relying too much on previous assessments
of capacity and regular review should be embedded
in the system. There should be overt acknowledge-
ment that the way in which a professional asks ques-
tions or gives information can enhance or diminish a
patient’s capacity. The location, timing, physical and
emotional variables can all inform the assessment of
capacity and should be addressed so far as possible to
minimise the potential effects of, for example, unfa-
miliar surroundings, pain, anxiety and tiredness.
Capacity is not simply a free floating legal state:
it assumes meaning and purpose in relation to spe-
cific decisions. As such, the assessment of capacity
must be carried out with reference to the particular
decision to be made e.g. with reference to the specific
intervention or treatment proposed. The professional
carrying out the assessment should establish to what
end a capacitous decision is being sought. Similarly,
professional(s) asking for assessments of capacity
should clarify exactly what is being asked of the pa-
tient and why.
Medicine is naturally concerned with diagnoses
and categorisation, yet in the assessment of capacity6
pre-existing diagnoses may inhibit ethical practice.
The assessment of capacity should be unrelated to
any pre-existing diagnoses, including those of cogni-
tive impairment or disorder (EDCON, 2006). The fact
that a person has been diagnosed with a particular
disorder does not inevitably mean that an assess-
ment of capacity should be made. The assessment of
capacity is concerned with a person’s ability to decide
and not with diagnostic labels.
Patients may be uncooperative when a profes-
sional seeks to conduct an assessment of capacity, but
refusal to cooperate does not mean that the patient
can be assumed to be incapacitous. Therefore pro-
fessionals may need to be imaginative and patient in
attempts to engage patients in capacity assessments.
6
It is not only in the assessment of capacity that a pre-exist-
ing diagnosis of dementia that may be inhibited, but the
treatment offered to patients (Gallagher and Clark, 2002).
53
Chapter 5: D. Bowman
For example, close attention to influencing factors such
as the way in which explanations are given, a profes-
sional’s manner and demeanour and the surrounding
environment can all enhance a patient’s potential for
capacity. The virtuous professional (Toon, 2006) there-
fore will seek to maximise a patient’s ability to under-
stand information by explaining it in clear and simple
language and being as reassuring as possible. Options
that can be explored to maximise a patient’s under-
standing include treating an underlying condition that
is inhibiting decision-making, writing down informa-
tion, drawing diagrams, using educational models, vid-
eos and audiotapes, using translators, letting the pa-
tient choose a friend or relative to be present7, finding
a private place for the consultation, remaining alert to
confidentiality (Hughes et al., 2002) and, where appro-
priate, considering the use of a validated, structured
tool such as the MacArthur Competence Assessment
Tool for Treatment8 (Grisso et al., 1997; Grisso and Ap-
pelbaum, 1998) which research has recently shown to
have validity in assessing the capacity of older patients
in the UK (Eastman and Starling, 2006).
Finally, healthcare professionals may have an im-
portant role in maximising capacity by considering
the place of advanced statements. Whilst advance
statements have variable legal status in differing ju-
risdictions, there are common challenges attendant
upon expressing preferences in anticipation of future
loss of capacity, ranging from philosophical ques-
tions about whether connectedness is intrinsic to the
meaningful discharge of prospective autonomy (Ful-
7 on principles of self-determination. Yet, embedded in
Clearly, a professional should have due regard to the prin-
ciples of confidentiality and not assume that a patient is
content for friends or relatives to be present.
8
The “MacCAT-T” is a tool devised by two American psy-
chiatrists: Thomas Grisso and Paul S. Appelbaum. The tool
comprises a structured interview following a consistent
format in which questions are phrased in a defined way
and predetermined cues used to elicit information whilst
applying a quantitative rating. The interview covers the
patient’s: (i) appreciation of his or her disorder; (ii) under-
standing of treatment and risks/benefits; (iii) knowledge
of alternative treatments; (iv) reasoning; and (v) ability to
express a choice.
54
ford et al., 2003; Parmentier et al., 2007) to practical
challenges of applicability (Gallagher and Clark, 2002;
Hughes and Baldwin, 2006). Once again, the virtuous
healthcare team will discuss the role of advanced de-
cision-making and substituted judgement to make
explicit how connectedness is perceived by patient,
carers and professionals. What values were impor-
tant to the person when they were capacitous? How
do those values, or what Dworkin calls “critical inter-
ests” (Dworkin, 1993) relate to the pleasures of the in-
capacitated person? Is there connectedness between
previous interests and current interests? As with the
“assessment of capacity” itself, the development or
implementation of advanced statements is not in
itself a “moral” act, but can become so once profes-
sionals reflect on the ethical basis for preferences ex-
pressed in anticipation of declining capacity.
3 Autonomy: an unhealthy ethical pre-
occupation?
Whilst determinations of capacity open the door
to legal rights and privileges, the ethical premise on
which assessments of capacity occur warrants atten-
tion. The assessment of capacity is commonly said
to be the legal embodiment of the moral principle
of autonomy. But is “autonomy” really indicative of
moral principle? And if “autonomy” does have inher-
ent moral value, what is it and why is it so?
The arguments that accompany ethical discus-
sions relating to facilitating patient autonomy focus
the notion of self-determination, which is not inher-
ently morally valuable, are moral assumptions about
personhood, the nature of human relationships and
the aims of healthcare. Respect for autonomy too
often depends on a shared definition of personhood
characterised by the ability to remember, compre-
hend often complex information that might be poor-
ly communicated by over-worked professionals and
express preference. Those who advocate “respect for
autonomy” as their sole moral guide too readily as-
sume constancy of identity, experience and continu-
 Who decides who decides? Ethical perspectives on capacity and decision-making
ity of narrative that may be inapplicable to the person
with cognitive impairment yet who is able to convey
preference (Kitwood, 1997; Hughes, 2001).
Too often invocations of autonomy construct
human relationships in a separatist way – individu-
als making personal choices in a social vacuum that
neither considers nor accounts for the complex, em-
bedded context in which most human interaction oc-
curs, particularly when illness renders one vulnera-
ble (Verkerk, 2001; Price and Bowman, 2007). Indeed,
even in the case of the so-called competent patient,
heuristic influences on decisions renders the notion
of the rational decision taken on the basis of infor-
mation questionable (Schwab, 2006). In the context
of people with dementia, autonomy, or at least the
version of it that dominates Western bioethics dis-
course, may not the most persuasive or frankly use-
ful moral principle to inform practice depending as
it does on these assumptions that do not account for
the experiences of many people with dementia and
their carers9 who are struggling not with life-chang-
ing, one-off events requiring a definitive decision, but
with the daily demands of preserving dignity, maxim-
ising independence and adjusting to change (Ekman
and Norberg, 1988; Hughes et al., 2002; Pucci et al.,
2003; Gatmans and Milisen, 2006).
4 Alternatively autonomous: other ethical
models for decision-making
Autonomy then may be a useful moral principle when
considering the question of capacity in people with
dementia only if one adopts a relational rather than
functional model of personhood and locates decision
making in the wider empirical social context (Sarto-
rius, 2002; Eastman and Starling, 2006; Oppenheimer,
2006; Price and Bowman, 2007). What alternative
ethical theories and models might be useful?
Relational ethics of care (Noddings, 2003; Sadler,
2005) prioritise interaction between people, thereby
9
And the dilemmas of carers may be quite different from
those of professionals (Hughes et al., 2002)
allowing the professional to be alert to, and develop,
the beneficent aims of virtue ethics (Price and Bow-
man, 2007). The professional-patient relationship is
redrawn and all who care about the well-being of an
individual embark upon a shared enterprise of facili-
tating choice and the expression of preference. The
power imbalance embedded in the “assessment of
capacity” model in which a professional determines
whether a person is or is not to be able to make deci-
sions is replaced with compassion and respect. Such
an approach may assist healthcare professionals who
are untowardly distracted by seeking the “lost” per-
son whilst addressing relatives’ concerns which may
not always appear desirable or even ethical (Pucci et
al., 2003). The antipathy to the humane, psychologi-
cal and caring aspects of healthcare that, controver-
sially, some (male) commentators have described as
a “masculine” approach (Marinker, 1998, p. 70) is ren-
dered unethical. “Relational autonomy” renders the
assessment of capacity one of several moral factors
to be considered in a wider “ethic of care” in which
the interests of people with dementia are consid-
ered with parity of attention to context, carers and a
changing situation in which roles and priorities shift
(Verkerk, 2001).
In a thought-provoking analysis, Post (2006)
uses the term “respectare” to plead for a collective
revisiting of how people with impaired capacity are
treated. Post argues for moral recognition of what he
calls people’s “essential humanity” whatever cogni-
tive decline may have occurred as a consequence of a
dementing process suggesting that to do otherwise is
to accede to the “moral blindness” of “hypercognitive
snobbery” (Post, 2006, p. 223). Such a starting posi-
tion avoids the perhaps logical, but disarming, con-
clusions of philosophical perspectives that depend
on functional models of personhood and expressions
of preference as individualised episodes of unmitiga-
ted autonomy. An ethos of communitarian inclusion
instead replaces the binary and definitive construct
of healthcare professional assessing capacity and
permitting or denying illusory “self-determination”
depending whether a person meets the “test” of ca-
pacity applicable in his or her jurisdiction.
55
Chapter 5: D. Bowman
Moreover, a communitarian, respectful and inclu-
sive moral world is not merely beneficial for those in
whom cognitive function is impaired and for whom
“capacity” becomes a frustratingly elusive target. Nor
does such a perspective merely enhance the likeli-
hood of “virtuous” healthcare professionals who
recognise the limits of relying exclusively on super-
ficial invocations of autonomy as their ethical guide.
A moral community in which diversity of function is
noted, shapes care but does not irrevocably deter-
mine choices allows for recognition of the over-stated
divide between pathology and normality that so often
imbues healthcare discourse. The positivist tendency
artificially to delineate between disease and health
thereby representing medical knowledge as constant,
certain and unchallengeable has been challenged
since Kuhn (1962) first exposed how chemists and
physicists reinterpret and differently understand the
same scientific “fact” (Bowman, 2007).
Noting that biomedical knowledge and there-
fore practice are socially constructed and shaped by
prevailing cultural norms is not revelatory, so why in-
clude it at all in a chapter on ethics and capacity? The
answer, for this author, lies in the sense of “otherness”
that the certainty of the positivist discourse of bio-
medicine allows for that might shape how healthcare
professionals respond to people with dementia and
their carers. The sort of communitarian moral frame-
work in which respect, care and person-centred, con-
textual decision-making depend less on an ability to
meet the formal rules of “capacity” and more on the
imagination, patience and sensitivity of the profes-
sionals posited by Kitwood (1997) and Post (2006)
exposes the continuum of “memory status” across
people of all sorts, with and without, formal diag-
noses of “dementia”. No longer is “dementia” a state of
“otherness” but represents one point on a distribution
curve of variable cognitive function and impairment
(Harding and Palfrey, 1997). It is a dynamic but not
determinative state and most importantly of all, it is
a familiar not an alien state. Thus an inclusive, open
understanding of cognition, impairment, social rela-
tionships and care enhance not only the experiences
of patients and their families, but the moral charac-
56
ter of those professionals who work with patients and
families. Put simply, being open to ways of knowing
about disease makes it more likely a professional will
be open to multiple ways of facilitating ethical deci-
sion-making rather than depending on the rule based
“assessment of capacity” prototype which mirrors
narrow biomedical approaches to nosological cate-
gorisation.
5 Conclusion: compassionately engaging
with capacity
The title of this chapter sums up the challenge for
those working with people who have dementia: the
general trend to constructing the moral question as
a matter of who decides about a person’s care seduc-
tively but dangerously elides multiple moral assump-
tions that warrant close attention. First, the assump-
tion is that someone will prevail in the quest to make
decisions, be it the patient, the clinical team or, as
substituted judgement becomes commoner, a proxy.
There is implied potential for adversary between the
parties who seek to be the voice that prevails. Further
the assumption that the question should be ‘who de-
cides’ rests, of course, on another assumption, name-
ly that there is an effective mechanism by which to
allocate the decision-making role fairly – and that
mechanism is generally taken to be the assessment
of capacity.
To some extent, the unquestioned emphasis on
capacity assessment is understandable for the as-
sessment of capacity is essential to ethical medical
practice – but only because it has been constructed
thus, partly by law, partly by the conventions of medi-
cine and partly by the language of medical ethics. The
tendency to embrace guidelines and tools for assess-
ing capacity, however excellently drafted, grounded
in legal principle or well-validated, and to treat such
guidance as a clinical recipe book is flawed because it
obscures the ethical roots of what, it is argued, profes-
sionals must reflect on and discuss in order to facili-
tate decision-making with their patients irrespective
of diagnosis, cognitive status or proposed treatment.
 Who decides who decides? Ethical perspectives on capacity and decision-making
There is no inherent moral magic in the words
“capacity” or “autonomy”. Yet in the sometimes over-
whelmingly demanding environment of healthcare, it
is perhaps understandable if professionals prefer the
apparent simplicity of attributing “capacity status”
whilst invoking phrases such as “respecting autono-
my” or “acting in best interests due to lack of auton-
omy” to support these immensely difficult decisions.
But, to be seduced, however understandably, by the
apparent answers of a thorough capacity assessment
is ultimately to diminishing to patients, carers and
even what it means to be a professional (Durkheim,
1957; Cruess et al., 1999; Hoff, 2000; Arnold and Stern,
2006). Without overt and considered attention to the
reasons why moral value is afforded to one version
of care over another version of care, the healthcare
professional who conducts assessments of capacity
is engaging in the ethical equivalent of prescribing
without understanding anything about the mecha-
nism of action or side effects of the drug.
To continue the pharmacological metaphor, as-
sessing capacity has an important place in the care of
people with dementia, but it is potent, has been clev-
erly marketed invoking the language of ethics and
law but may have significant side effects if it is not
well understood. The potency of the assessment of
capacity lies in its all-encompassing representation
and presumptions. The task too readily becomes to
identify which party will make decisions with too litt-
le regard for how and why those decisions are taken.
It may be too readily assumed that merely by perform-
ing a skilful assessment of a person’s capacity, one has
acted ethically. Moreover, so to do is to raise function-
ality to the ultimate determinative status which may
be questionable to many professionals working with
patients with cognitive impairment. The side-effects
of such an approach to assessing capacity are that the
power-imbalance between patient and professional
may be reinforced not remedied, decisions can be
taken without reference to the context of connected-
ness, interests and preoccupations of the patient one
is serving, values that could be considered inherent
in healthcare are lost and one’s practice becomes re-
ductionist, artificial and legalistic.
Thus, the challenge for all healthcare profes-
sionals is to revisit their moral roots or perhaps even
discover them for the first time! Ethical develop-
ment, like any area of professional development, is a
process in which values, principles, evidence, anec-
dote and empirical reality are exposed, shared, chal-
lenged and reconsidered (Bowman, 2005). In other
words, it is not a process that is easily fitted into a
busy working day which possibly explains why the
assessment of capacity may become the ethico-le-
gal panacea without due attention to its ethical un-
derpinning. However, it is only by making time and
space to reflect on what it means to be human, to
make choices, to care and perhaps ultimately to be
a healthcare professional serving others will prac-
titioners maximise the chances that the constant
flow of challenging decisions they facilitate and
take daily are justifiable both externally and perhaps
more importantly internally. Indeed, moving beyond
a mantra-like invocation of the word “autonomy” to
consider some of the questions and challenges raised
in this chapter with colleagues may even bring suffi-
cient ethical peace to ensure a good night’s sleep!
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Chapter 6
ARE LEGAL SYSTEMS IN EUROPE FIT FOR THE DEMENTIA CHALLENGE?
APPROACH OF THE COUNCIL OF EUROPE
Nicole Kerschen1
1 Introduction
Are legal systems in Europe fit for the dementia challenge?
The answer to this question is given by the Council of
Europe2, which aim is to protect the individual’s dig-
nity and fundamental rights in general, and more spe-
cifically with regard to the application of biology and
medicine. Principles and legal standards were drawn
up in the “Convention on human rights and biomedi-
cine”3. This Convention is the first legally binding in-
ternational text designed to preserve the human being
against the misuse of biological and medical advances.
It was adopted by the Committee of Ministers of the
Council of Europe on 19 November 19964 and opened
for signature in Oviedo on 4 April 1997. It is founded
on the same approach, the same ethical principles and
the same legal concepts than the Convention for the
protection of human rights and fundamental freedoms
of 4 November 1950 from the Council of Europe5.
1
Nicole Kerschen (nkersche@u-paris10.fr) coordinated
LAWNET I, a study on the rights of people with Alzhei-
mer’s disease, for Alzheimer Europe: www.alzheimer-
europe.org/?lm1=17EE9410D104.
2
46 European states belong as member states to the Council
of Europe.
3 6
Convention for the protection of human rights and dignity
of the human being with regard to the application of biolo-
gy and medicine: www.coe.int/T/E/legal_affairs/legal_co-
operation/bioethics/
4
Belgium and Germany abstained from voting on the adop-
tion of the Convention.
5
Other international instruments are mentioned in the pre-
amble of the Convention, like the Universal Declaration of
human rights of the United Nations (10 December 1948).
Between April 1997 and November 2006, thirty-
four states6 signed the Convention, but only part of
them ratified it. Application needs ratification. Ratifi-
cation means that national law conforms to the Con-
vention. Conformity may be achieved either by apply-
ing directly the Convention’s provisions in domestic
law or by enacting the necessary legislation to give
effect to them.
The European Convention on human rights
and biomedicine applies in the following European
countries: Bulgaria (2003), Croatia (2004), Cyprus
(2002), Czech Republic (2001), Denmark (1999), Es-
tonia (2002), Georgia (2001), Greece (1999), Hungary
(2002), Iceland (2005), Lithuania (2003), Moldova
(2003), Norway (2007), Portugal (2001), Romania
(2001), San Marino (1999), Slovakia (1999), Slovenia
(1999), Spain (2000) and Turkey (2004)7. It must be
noted that France, Germany and Great-Britain do not
belong to this list. They played an important role in
the leadership of the Steering Committee on Bioeth-
ics (CDBI), which drafted the text. France signed the
Convention, but did not ratify it afterwards. Germany
and Great Britain did not even sign it.
The main principle of the Convention is present-
ed in Part 2; it is applied, in Part 3, to consent in case
Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech
Republic, Denmark, Estonia, Finland, France, Georgia,
Greece, Hungary, Iceland, Italy, Latvia, Lithuania, Luxem-
bourg, Moldova, Netherlands, Norway, Poland, Portugal,
Romania, San Marino, Serbia, Slovakia, Slovenia, Spain,
Sweden, Switzerland, Macedonia, Turkey, Ukraine (as
member states of the Council of Europe) and Montenegro
(as a non-member state of the Council of Europe).
7
The year of the entry in force is put in brackets.
Chapter 6: N. Kerschen
of intervention in the health field; in Part 4, its appli-
cation in the special field of research is analysed8. In
each part, the answers to the following questions are
highlighted: How do principles apply to persons with
dementia? How are these people protected, if they are
unable to consent?9
2 Main principle of the Convention: primacy
of the human being
The purpose of the Convention is that all countries
“shall protect the dignity and identity of all human be-
ings and guarantee everyone, without discrimination,
respect to their integrity and other rights and funda-
mental freedoms with regard to the application of bio-
logy and medicine”. Article 1 restricts the scope of the
Convention to human biology and medicine, thereby
excluding animal and plant biology insofar as they
do not concern human biology or medicine. But the
Convention covers all medical and biological applica-
tions concerning human beings, including preventive,
diagnostic10, therapeutic and research applications.
The Convention recognises, in Article 2, the pri-
macy of the human being. It is said that “the interests
and welfare of the human being shall prevail over the
sole interest of society or science”. What does it mean?
Interests at stake are not equal. In principle, priority
is attached to the interests of the individual opposed
to those of the science or society. But the adjective
“solely” means that the interests of science or society
8
We decided to exclude consent in case of transplantation
purposes.
9
For the purposes of this chapter, we used the Explanatory
Report to the Convention on human rights and biomedi-
cine from the directorate of legal affairs of the Council of
Europe. Strasbourg, May 1997.
10
Nicole Kerschen, L’individu, maître de ses choix en ma-
tière biomédicale (approche européenne): L’exemple du
diagnostic précoce dans la maladie d’Alzheimer. 3e Assises
des Consultations de la Mémoire; Paris, 1–2 février 2002 et
Conférences internes de la Clinique de Psychiatrie géria-
trique des Hôpitaux Universitaires de Genève (Prof. Gian-
nakopoulos); Genève, 9 mai 2003. Ronéo 9 pages et an-
nexe.
62
must come directly after the interests of the individ-
ual. The aim of the Convention is to shield the indi-
vidual from any threat resulting from the improper
use of scientific developments.
All articles must be interpreted in the light of the
principle of primacy of human being. This is the
originality of the approach of the Council of Europe.
It must be said here, that Article 27 gives the states
the possibility to grant a wider measure of protection than
is stipulated in the Convention. What does “a wider meas-
ure of protection” mean? The text lays down common
standards with which the states must comply, while
allowing them to provide greater protection of the hu-
man being and of human rights with regard to applica-
tions of biology and medicine. What if a conflict arises
between various rights established by the Convention?
For example, between a scientist’s right of freedom of
research and the rights of a person submitting to the re-
search? The expression “a wider measure of protection”
must be interpreted in the light of the purpose of the
Convention, as defined in Article 1, namely the protec-
tion of the human being with regard to the application
of biology and medicine. As a consequence, any addi-
tional protection can only mean greater protection for
the person submitting to research.
3 Consent in case of an intervention in the
health field
The Convention provides, in Chapter II on consent,
rules for five different cases:
– consent of a person able to consent (Article 5)
– protection of a person unable to give consent
(Article 6)
– special situation of a person with mental disor-
der (Article 7)
– emergency issues (Article 8)
– the case of previously expressed wishes
(Article 9).
General rules are first highlighted. Secondly, the ap-
plication of the main principle in special situations
 Are legal systems in Europe fit for the dementia challenge? Approach of the Council of Europe
is analysed. Finally, the case of previous expressed
wishes is presented.
3.1 General rules
Consent of a person able to give consent
Article 5 presents a very simple principle: no one may
be forced to undergo an intervention in the health field
without his or her consent. The term “intervention”
must be understood in a broad sense: it covers all
medical acts, in particular interventions performed
for the purpose of preventive care, diagnosis, treat-
ment and rehabilitation or in a research context. All
interventions must be performed in accordance with
the law, supplemented and developed by professional
rules.
Human beings must be freely able to give or
refuse their consent. This approach is based on pa-
tient’s autonomy in relationship with healthcare
providers. It restrains the paternalistic approach, in
which the patient’s wish might be ignored. Consent
must be free and informed.
The patient’s consent is considered to be free
and informed if it is given on the basis of objective
information from the responsible healthcare profes-
sional as to the purpose and the nature of the inter-
vention, as well as on the potential consequences and
risks of it, or of its alternatives (Article 5 §2). But the
elements enumerated in this article are not an ex-
haustive list. Informed consent may apply, according
to the circumstances, additional elements, as for ex-
ample the risks related to the individual characteris-
tics of each patient, such as age or existence of other
pathologies.
Moreover, information must be sufficiently clear
and suitably worded for the person, who is to under-
go the intervention. The individual must be put in a
position that he or she could weigh up the necessity
or usefulness of the aim and methods of the interven-
tion against the risks, the discomfort or the pain it
will cause.
Consent may take various forms. It may be ex-
pressed (verbal or written) or implied. In some cases,
as invasive diagnosis, acts or treatment, express con-
sent may be required. Moreover, expressed specific
consent must be obtained from a person participat-
ing in research (see Part 4).
Finally, freedom of consent implies that consent
may be withdrawn, at any time, by the person. The
decision of the person may be respected once he or
she has been fully informed about the consequences.
But professional standards and obligations, as well as
rules of conduct that apply in such cases, may oblige
doctors to continue the intervention so as to avoid
seriously endangering the patient’s health.
Protection of a person not able to consent
The principle laid down in Article 6 is the following:
an intervention may only be carried out on a person,
who does not have the capacity to consent, for his or
her direct benefit. Deviation from this principle is
possible in case of medical research (see Part 3).
A difference is made between individuals unable
to give full and valid consent to an intervention due
to their age (minors) and individuals unable to con-
sent due to their mental incapacity (adults). We focus
on the second instance.
Firstly, the incapacity to consent referred to in
Article 6 must be understood in the context of a giv-
en intervention. However, account has been taken
of the diversity of legal systems in Europe. In some
countries, the patient’s capacity to consent must be
verified for each intervention; in other countries, a
person may be declared legally incapacitated which
implies incapacity of consenting to one or more types
of act. As the purpose of the Convention is not to in-
troduce a single legal system for the whole of Europe,
but protect people who are not able to give their con-
sent, reference has been made in the text to domestic
law, which will determine, in each country, whether
or not a person is capable for consenting to an inter-
vention.
In order to protect the fundamental rights of hu-
man beings and to avoid the application of discrimi-
natory criteria, Article 6 §3 lists the reasons why an
adult may be deprived of his or her capacity of au-
tonomy under domestic law: a mental disability, a
63
Chapter 6: N. Kerschen
disease or similar reasons. It must be noted that age
has not been listed as a reason. The term “similar rea-
sons” refers to situations such as accidents or states
of coma, where the patient is unable to formulate his
or her wishes or to communicate them.
If adults have been declared incapable, but for a
moment do not suffer from a reduced mental capac-
ity, they must themselves consent.
Secondly, when an adult is not capable of con-
senting to it, the intervention may only be carried out
with the authorisation of his or her legal representative,
or any person, authority or body provided for by the law
(Article 6 §3). It must be noted that family members
or relatives may only intervene if they are legal rep-
resentatives. But participation of adults not able to
consent in decisions must not be totally ruled out.
Therefore, Article 6 §4 foresees the obligation to in-
volve the adult in the authorisation procedure when-
ever possible.
Thirdly, the representative, authority or body,
whose authorisation is required for the intervention,
must be given adequate information about the conse-
quences and risks involved. The same conditions ap-
ply, as in Article 5, for a person able to give consent.
Finally, the authorisation may be withdrawn by
the representative, authority or body, at any time,
provided that this is done in the best interest of the per-
son not able to consent. The condition of “best interest”
is very important. While a person capable of giving
consent to an intervention has the right to withdraw
that consent freely, even if it appears to be contrary
to his or her interest, an authorisation given by a rep-
resentative, authority or body must be retractable
only if this is in the interest of the person unable to
consent. This condition is in line with the objective
of protecting the person. Domestic law should also
provide adequate recourse procedures.
3.2 Special situations
Protection of persons with mental disorder
Article 7 deals with a special question, which may be
important in case of dementia. This question is about
64
the treatment of patients suffering from mental dis-
orders: “a person who has a mental disorder of a serious
nature may be subjected, without his or her consent, to
an intervention”.
Article 7 constitutes an exception to the general
rule of consent for persons able to consent (Article 5).
It applies only to persons, who are capable to consent,
but whose ability to decide on a proposed treatment
is severely impaired by their mental disorder. If a per-
son with mental disorder is not capable for consent-
ing, authorisation for treatment must be given under
the conditions of Article 6.
But Article 7 also guarantees the protection of
these persons by submitting treatment for their men-
tal disorders without their consent to specific condi-
tions. It must be noted that it does not apply in case of
specific emergency situations mentioned in Article 8.
Four conditions must be fulfilled.
The first condition is that the person must be
suffering from a mental disorder of a serious nature,
which means that an impairment of the person’s
mental faculties must be proven.
The second condition is that the intervention
must be aimed at treating specifically the mental dis-
order of the person, which means that for all other
interventions the practitioner must seek the consent
of the patient. If a person capable of consent refuses
an intervention not aimed at treating her or his men-
tal disorder, the opposition must be respected in the
same way as the opposition from other patients ca-
pable of consent.
The third condition is that the absence of treat-
ment must seriously harm his or her health. Such a risk
exists when a person is a danger for himself or herself,
for example in case of attempt committing suicide.
Article 7 is not concerned, when patients are a risk
for other persons’ rights or freedoms, for example in
event of violent behaviour. Article 7 protects, on one
hand, the patient’s health and, on the other hand, the
patient’s autonomy. Intervention without consent is
only allowed if there is a serious risk for the person’s
health.
The fourth condition is that prospective condi-
tions prescribed by national law must be observed.
 Are legal systems in Europe fit for the dementia challenge? Approach of the Council of Europe
These conditions include supervisory, control and ap-
peal procedures.
Emergency situations
In these situations, doctors may face a conflict of du-
ties between their obligation to provide care and their
obligation to seek the patient’s consent. Article 8 al-
lows them, in such situations, to carry out immediate-
ly any necessary medical intervention for the benefit of
the health of the individual concerned, without waiting
until the consent of the patient or the authorisation
of the legal representative, authority or body, where
appropriate, can be given.
As Article 8 departs from the general rules (Ar-
ticles 5 and 6), its application is submitted to special
conditions.
Firstly, the possibility is restricted to emergencies
that prevent the practitioner from obtaining the appro-
priate consent. It applies, on the one hand, to persons
capable for consent, and on the other hand, to persons
unable to consent. In the last case, a doctor may be un-
able to contact a legal representative, authority or body,
who would have to authorise an urgent intervention.
Secondly, the possibility is restricted to medical-
ly necessary interventions which cannot be delayed.
Therefore, interventions for which a delay is accept-
able are excluded.
Lastly, the intervention must be carried out for
the immediate benefit of the individual concerned.
3.3 Case of previously expressed wishes
Article 9 lays down the following principle: The pre-
viously expressed wishes, relating to a medical inter-
vention by a patient who is not, at the time of the inter-
vention, in a state to express his or her wishes, shall be
taken into account.
This Article covers all situations where individu-
als, capable of understanding, have foreseen that they
might be unable to give their valid consent and have
previously expressed their consent (assent or refus-
al). It applies in case of emergency, but also in case of
progressive diseases like Alzheimer’s disease.
Previously expressed wishes must be taken into
account. This does not mean that they should be
necessarily followed. Wishes expressed a long time
before the intervention and science progress may be
grounds for not following the patient’s opinion.
4 Application in the special field of research
The Convention provides, in Chapter V on scientific
research, rules for persons undergoing research (Arti-
cles 15 to 17). In this field, an additional protocol was
drawn up with the purpose to develop further the
principles contained in the Convention. It must be
noted that it could not depart from the provisions of
the Convention. Moreover, it could not lay down rules
affording human beings less protection than that re-
sulting from the principles of the Convention.
The Additional Protocol to the Convention on
human rights and biomedicine concerning biomedi-
cal research was adopted by the Committee of Min-
isters of the Council of Europe on 30 June 2004 and
opened for signature in Strasbourg on 25 January
2005. To enter in force it needs five ratifications. In
November 2006, twenty-one states have signed it11,
but only three have ratified it – Bulgaria, Slovakia
and Slovenia – which means that it is not yet in force.
France, Germany and Great Britain did not sign it.
Before explaining the applicable rules, we must
define the term “biomedical research” and highlight
some of the fundamental principles12.
11
Bosnia and Herzegovina, Bulgaria, Denmark, Georgia,
Greece, Hungary, Iceland, Italy, Lithuania, Luxembourg,
Moldova, Norway, Portugal, Romania, Serbia, Slovakia,
Slovenia, Sweden, Turkey, Ukraine (as member states of
the Council of Europe) and Montenegro (as a non-member
state of the Council of Europe).
12
For the purpose of this chapter, we used the Explanatory
Report to the Additional Report to the Convention on
human rights and biomedicine concerning biomedical
research of the Directorate General I, Legal Affairs. Stras-
bourg, 25 January 2005.
65
Chapter 6: N. Kerschen
Definition of biomedical research
The Additional Protocol defines its scope as “the full
range of research activities in the health field involving
interventions on human beings”.
How can we distinguish medical research from
medical practice, especially innovative medical prac-
tice? In medical practice, the sole intention is to bene-
fit the individual patient, not to gain knowledge of
general benefit. In biomedical research, the primary
intention is to advance knowledge so that patients
in general may benefit, while an individual research
participant may or may not benefit directly.
What do “research activities” include? The proto-
col covers research into molecular, cellular and other
mechanisms in health, disorders and disease, carried
out by doctors, biologists and other professionals
such as psychologists. It includes diagnostic, thera-
peutic, preventive and epidemiological studies as far
as they involve interventions on the human being.
Moreover, all aspects of the research project from the
beginning to the end, even selection and recruitment
of the participants are included.
What does “intervention on human beings” mean?
The protocol states that, for its purpose, the term of
“intervention” covers, on the one hand, physical inter-
ventions, and on the other hand, other interventions
when they involve a risk for the psychological health
of the person concerned. The last include question-
naires, interviews and observational research taking
place in the context of a biomedical research proto-
col, when some questions are of an intimate nature
capable of resulting in psychological harm (sexual
history, psychiatric disorders, rare genetic diseases,
family medical histories…).
What kind of research is excluded? First, the pro-
tocol does not address research on the bodies or body
parts of deceased persons. Therefore, research on the
brain of Alzheimer’s patients after their death is ex-
cluded. Second, the scope of the protocol does not
extend to studies whose purpose is not to gain new
scientific knowledge, but to collect or to process in-
formation for purely statistical purposes such as for
audits or monitoring of the healthcare system.
66
Fundamental principles
The preamble of the protocol affirms the commit-
ment of the countries, which are parties to it, to take
necessary measures to safeguard human dignity and
the fundamental rights and freedoms of human beings
with regard to biomedical research. The principle of
primacy of the human being applies here, which
means that in the event of a conflict between the hu-
man being participating in research and the interest
of science or society, priority must be given to the
former.
The protocol recognises the freedom for scien-
tists to carry out biomedical research. Freedom of
biomedical research is justified not only by humani-
ty’s right to knowledge, but also by the considerable
progress its results may bring in terms of health and
well-being of patients. But such freedom is not ab-
solute. It is limited by the fundamental rights of in-
dividuals expressed by the provisions of the Conven-
tion and the Additional Protocol.
4.1 Protection of persons undergoing research
All persons undergoing research are given protection.
The Convention, in Article 16, states that “research on
a person may only be undertaken if all the following
conditions are met”. Five conditions must be fulfilled
for all research on human beings. Consent is one of
these conditions.
The first condition is that there must be no al-
ternative of comparable effectiveness to research on
humans. What does this mean? It means that re-
search will not be allowed if comparable results can
be obtained by other means, or that invasive methods
will not be authorised if less invasive or non-invasive
methods can be used with comparable effect.
The second condition is that the risks that may
be incurred by the person are not disproportionate to
the potential benefits of the research.
The third condition is that the research project
needs to be approved by a competent body after an in-
dependent examination of its scientific merit, includ-
 Are legal systems in Europe fit for the dementia challenge? Approach of the Council of Europe
ing assessment of the importance of the aim of the
research and multidisciplinary review of its ethical
acceptability.
The fourth condition is about the information
of the person undergoing research. She or he has to
be informed in advance of her or his rights and the
safeguards prescribed by domestic law for his or her
protection.
The protocol has developed the protection of
the person undergoing research in the field of infor-
mation. A person asked to participate in a research
project shall be given adequate information in a com-
prehensive form. The protocol does not require that
the information should be given by a specific person.
This should be determined by the nature of the re-
search, the needs of the potential participant, the na-
tional practice or the national law. The information
must be sufficiently clear and comprehensible for the
person undergoing research. It should be provided in
a way to make it understandable taking into account
the level of knowledge, education and psychologi-
cal state of the potential participant. It shall also be
documented, which means that it must be recorded
(written, video, audio recordings). The person shall
be given enough time to review the information.
Information shall cover the purpose, the overall
plan and the possible risks and benefits of the re-
search project. Information on the risks involved in
research must cover any risk related to the individual
characteristics of each participant, such as age or the
presence of other disorders. It should also include
the opinion of the ethics committee. The protocol
enumerates eight different items that have to be ad-
dressed through information.
In addition, the protocol states that the person
must be informed of her or his right to refuse consent
or to withdraw consent at any time without being sub-
ject to any form of discrimination, in particular regard-
ing the right to medical care.
The fifth condition is on consent. According to the
general rule of Article 5, human beings must consent
to each intervention in the health field. This applies to
research activities. The necessary consent must have
been given expressly, specifically and documented. In
the sphere of biomedical research, implicit consent is
insufficient. There must be a written consent. “Speci-
fic consent” means that consent has to be given to one
particular intervention carried out in the framework
of research. Such consent may be freely withdrawn by
the person at any phase of the research.
The protocol adds that the refusal of consent
or the withdrawal of consent to participation in re-
search shall not lead to any form of discrimination
against the person concerned, in particular regarding
the right to medical care. The participant should not
be required to give a reason for withdrawal.
The protocol foresees the situation, where the
capacity of the person undergoing research is in doubt,
while the person has not been declared legally inca-
pable of giving consent by a legal body. It requires
arrangements to be put in place to verify whether
a potential research participant has the capacity to
give informed consent. These arrangements could
be developed and implemented through profession-
al standards. It must be noted, that, in these cases,
the scientist is responsible for verifying the capacity
of the participants from whom he obtains consent.
Information on arrangements for such verification
in the context of a specific research project should
be submitted to the ethics committee reviewing the
project.
4.2 Protection of persons unable to consent to
research
First of all, general rule of Article 6 applies in the field
of biomedical research. Moreover, people unable to
consent are given a special protection. The Conven-
tion establishes a principle and an exception.
Principle
The results of a biomedical research carried out on
a person unable to consent must have the potential
to produce real and direct benefit to the person’s
health (Article 17 § 1). This applies in the field of re-
search the principle laid down in Article 6 for all in-
terventions in the health field, which means that an
67
Chapter 6: N. Kerschen
intervention may only be carried out on a person, who
does not have the capacity to consent, for his or her di-
rect benefit.
But the application of this principle is not
enough. Research on a person without the capacity to
consent may be undertaken only if all the conditions
applicable to persons able to consent are fulfilled (no
alternative to research on humans, no risk/benefit
disproportion, prior approval of the research project,
adequate information) plus three specific conditions.
The first specific condition is that research of
comparable effectiveness cannot be carried out on indi-
viduals capable of giving consent. There should be no
alternative individual with full capacity, which means
that recourse to research on persons unable to con-
sent must be scientifically the sole possibility. This is
the case for research aimed at improving the under-
standing of diseases like Alzheimer’s disease affect-
ing these people specifically. Such research can only
be carried out on adults with dementia.
The second specific condition is that an authori-
sation of his or her legal representative, authority or
body, provided for by the law, has been given specifical-
ly and in writing. The legal representative, authority
or body must be informed under the same conditions
that apply to persons able to consent. Moreover, the
information shall be submitted to the person con-
cerned, unless he or she is not in a state to receive the
information. It should also be provided to a caregiver
or a family member, when appropriate. An adult not
able to consent shall as much as possible be involved
in the authorisation procedure.
The protocol adds that the person’s previously
expressed wishes or objections must be taken into
account. Advanced directives are not mentioned, but
they may be recognised as a possible way of clarifying
a person’s wishes.
The authorisation given by a legal representa-
tive, authority or body may be freely withdrawn at
any time.
The third specific condition is that the person
concerned does not object. This rule prohibits the car-
rying out of the research against the wish of the per-
son. It reflects a concern for the autonomy and the
68
dignity of the person, in the field of research, in all
circumstances, even if the person is legally incapable
to give consent. He or she may object by verbal or non
verbal means. If the person is unable to express him-
self or herself, the opinion of the caregiver should be
taken into account in interpreting his or her wishes.
Exception
A research, which has not the potential to produce
results of direct benefit to the health of the person
concerned, may be authorised exceptionally and
under the prospective conditions prescribed by
domestic law (Article 17 §2).
This exception is justified by the fact that all
research on mentally disabled persons or persons
suffering from dementia would otherwise be impos-
sible. It is the aim of such research to benefit persons
in those groups through a better understanding of
the factors which will help to maintain and improve
health and wellbeing or through a better understand-
ing of disease processes. The Convention and the Pro-
tocol enable persons in these categories to enjoy the
benefits of science while guaranteeing the individual
protection of the person undergoing research.
Research without direct benefit will be author-
ised only if all the conditions applicable to persons
unable to consent are fulfilled, except the “no risk/
benefit disproportion” of cause (no alternative to
research on humans, prior approval of the research
project, adequate information, no alternative of re-
search on individuals incapable of giving consent,
authorisation by a legal representative, no objection
by the person) plus two additional conditions.
The first additional condition is that the research
has the aim of contributing, through significant im-
provement in the scientific understanding of the indi-
vidual’s condition, disease or disorder, to the ultimate
attainment of results capable of conferring benefit to
the person concerned or to other persons in the same
age or afflicted with the same disease or disorder or
having the same condition.
The second additional condition is that the re-
search entails only minimal risk and minimal burden
for the individual concerned. While Article 16 restricts
 Are legal systems in Europe fit for the dementia challenge? Approach of the Council of Europe
research in general by establishing a criterion risk/
benefit proportionality, Article 17 §2 lays down a
more stringent requirement for research without di-
rect benefit to persons incapable of giving consent.
The protocol adds that any consideration of addi-
tional potential benefits of the research shall not be
used to justify an increased level of risk or burden.
The protocol defines what is meant by “minimal
risk” and by “minimal burden”. A research bears a
minimal risk if, having regard to the nature and scale
of the intervention, it is to be expected that it will re-
sult, at the most, in a very slight and temporary nega-
tive impact on the health of the person concerned.
Likewise, a research bears a minimal burden if it is to
be expected that the discomfort will be, at the most,
temporary and very slight for the person concerned.
For certain participants, certain research procedures
might entail risk or burden which cannot be consid-
ered minimal. That means that assessment has to be
carried out on individual basis. Moreover, in assess-
ing the burden for an individual, a person enjoying
the special confidence of the person concerned shall
assess the burden where appropriate. This person
may be a family member, a caregiver, a partner or a
close friend.
If all these conditions, including specific and addi-
tional conditions, are fulfilled, research without direct
benefit may be undertaken on patients with Alzheimer’s
disease and other types of dementia, who are no more
capable to give consent.
4.3 Specific situation: research on persons in
emergency clinical situations
The protocol addresses research that can only be
undertaken in emergency situations and which is in-
tended to improve emergency response or care. What
is meant by “emergency clinical situations”? A recog-
nised emergency situation is one that is unforeseen
and which requires prompt action.
The protocol states that it is for the law of the
countries to determine whether, and under which
protective additional conditions, this research can
take place. This applies in two different situations.
On the one hand it applies when a person is not in a
state to give consent which means when he or she is
factually unable to consent. On the other hand, it ap-
plies when it is impossible, due to the urgency of the
situation, for the researcher to obtain, in a sufficiently
timely manner, authorisation from a representative,
authority or body, which would, in the absence of an
emergency situation, be called upon to give authori-
sation.
Domestic law has to include four specific condi-
tions.
The first specific condition is that research of
comparable effectiveness cannot be carried out on per-
sons in non-emergency situations.
The second specific condition is that the re-
search project may only be undertaken if it has been
approved specifically for emergency situations by the
competent body.
The third specific condition is that any relevant
previously expressed objections of the person known
to the researcher shall be respected. “Known to the re-
searcher” means that the potential participant has a
card on his person registering such an objection or
that someone accompanying the person gives infor-
mation to the researcher.
The fourth specific condition is that, where the
research has not the potential to produce results of di-
rect benefit to the health of the person concerned:
– it must have the aim of contributing, through
significant improvement in the scientific under-
standing of the individual’s condition, disease or
disorder, to the ultimate attainment of results
capable of conferring benefit to the person con-
cerned or to other persons in the same age or af-
flicted with the same disease or disorder or hav-
ing the same condition
– it must entail only minimal risk and minimal
burden.
Finally, persons participating in an emergency re-
search project or their representative, authority or
body shall be provided, as soon as possible, with rel-
69
Chapter 6: N. Kerschen
evant information concerning their participation.
Moreover, consent or authorisation for continued
participation shall be requested as soon as reason-
ably possible. This occurs if the research participant
recovers full understanding while still undergoing
research.
5 Conclusion
In conclusion, we come back to the title of the chap-
ter: Are legal systems in Europe fit for the dementia
challenge? Our answer is “yes” and “no”.
70
The Convention on human rights and biome-
dicine and the Additional Protocol on biomedical re-
search provide for a legal framework relevant to the
dementia challenge. But their application depends on
the willingness of the member states. An option might
be the signature by the European Union. Moreover,
the rules of the Convention and the Additional Pro-
tocol have to be implemented. The Council of Europe
conducts a cooperation program with the member
states from oriental and central Europe, called DEBRA
project. This project includes multi- and bi-lateral sem-
inars and visits and also the production of information
material on the best practices throughout Europe.
Chapter 7
TESTAMENTARY AND FINANCIAL COMPETENCE ISSUES IN DEMENTIA
Konstantinos N. Fountoulakis and Katerina Despos
1 Introduction
It is well documented and known that old age is
usually accompanied by a decline in neurocognitive
function. However, many times the elderly suffer from
dementia of various types. This is of course much dif-
ferent from normal aging and this pathological con-
dition robs the patient of his/her memories, intellect,
and abilities to recognize persons, to maintain basic
functions, or even comprehensible speech.
Still, all patients have of course the right to par-
ticipate in decisions, especially about their health,
treatment and care. Especially the elderly, have the
need and the right to participate in financial and
testimonial decisions. However in order for a person
to be able to participate in complex decisions like
them, he/she should be able to consider the benefits,
burdens and consequences that will arise. Patients
suffering from dementia may and often have the ca-
pacity to make some, but not all, decisions. Thus, it
is necessary to determine where the limits of their
capacities are, having in mind always that it is bet-
ter to try to discover the patient’s true wishes and pre-
ferences rather than to immediately take to a family
member for decision making.
It is possible that challenges to wills on the basis
of lack of testamentary capacity are likely to increase
in the future. This will be the result of a combination
of high prevalence of mental disorders in the elderly
and the complexity of modern societies and families.
The courts and all experts in the field of geriatric
medicine, psychiatry and psychology will feel the
burden. Professionals from these fields will be asked
to assess the testamentary capacity of individuals
whose wills are being challenged. But most cases
will probably be complicated. Most wills will be chal-
lenged retrospectively, in most of them there will be a
radical change from a previous will, an undue influ-
ence will be alleged, and dementia may be suspected
(Shulman et al., 2005).
Of course the above scenario describes a very
complex and difficult picture. Those professionals
who perform evaluations of competency of demented
patients must be specifically trained and experienced
in performing clinical psychiatric interviews and ad-
ministering, scoring, and interpreting psychological
and neuropsychological tests. Training and experi-
ence in gerontology, neuropsychology, rehabilitation
psychology, neuropathology, psychopharmacology,
and psychopathology in older adults may also be nec-
essary in order for the examiner to be able to inter-
pret the data. Knowledge of the legislation is another
factor of prime importance for the experienced men-
tal health professional.
2 Dementia and competency
Classification systems of disability make a distinction
between the definition of a disease, which concerns
the intrinsic pathology of a disorder, and the defini-
tion of disability, which refers to the effect the disease
has on the patient’s ability to perform everyday func-
tions (World Health Organisation, 2001).
Recent studies suggest that about 20% of pa-
tients with dementia may be competent to complete
advance directives in comparison to 78% of the eld-
erly healthy volunteers (Fazel et al., 1999b). Although
the statistics suggest that most demented people
are unable to perform such complex tasks, they also
Chapter 7: K.N. Fountoulakis and K. Despos
suggest that about one fifth of them, especially those
with an early-stage dementia may be competent to
complete even advance directives. Their premorbid
IQ may be an essential prognostic factor of compe-
tency. It is important to note that the mere presence
of any severe mental illness does not automatically
render elderly people incompetent (Regan and Gor-
don, 1997). What might be of particular importance
is the determination of the dementia subtype, as the
neuropathology and the brain areas affected by each
subtype differ and subsequently differ the pattern of
disordered functions. This is an important concep-
tual framework to have in mind when considering
decision-making capacity in individual cases. Even
more, the mental health professional must have in
mind that competence is specific, not global, that is,
an individual is or is not competent with respect to a
specific decision or setting (Fazel et al., 1999a). Also,
impaired awareness of deficits does not necessar-
ily occur for all areas of functioning simultaneously.
Alzheimer’s disease patients may have varying levels
of awareness for deficits in several domains of func-
tioning such as attention, recent and remote mem-
ory, everyday functioning and self-care (Starkstein
et al., 1996). It is reported they may be more aware
of their self-care and social and emotional deficits
than of their cognitive deficits. Awareness of deficits
is more problematic when the deficit involves areas
that require more complex and higher order process-
ing and integration as is the case with testamentary
and financial decisions (Vasterling et al., 1997).
Unfortunately, the widespread belief even among
doctors is that demented patients are by definition
incapable of complex decisions. A US survey showed
that 72% of them believed that a diagnosis of de-
mentia automatically renders a person incompetent
(Markson et al., 1994). These beliefs have profound
consequences, one of which is the fact that most
records do not include sufficient and valid data to
retrospectively assess competence (Toffoli and Herr-
mann, 1993).
72
3 Definition and prerequisites for testamentary
and financial competence
The most important elements many professionals
are unaware of, is that capacity is not an all-or-noth-
ing “on-off ” switch. It depends both on the specific
issue, the circumstances and the assistance that can
be given to the patient by his/her family and profes-
sionals. In this frame, a patient may be able to make
some but not all decisions. Of course, the more seri-
ous the risks or the consequences of a decision, the
clearer the patient’s capacity needs to be. This deci-
sion-making capacity presumes several functions of
the patient are relatively intact. These include reality
testing, neurocognitive function and personal values
and goals. One of the most difficult issues a profes-
sional may face is the fact that a patient’s “bad” de-
cision from the perspective of the healthcare profes-
sionals or family caregivers is not necessarily a prime
indicator of lack of capacity or incompetence, and the
genuine free will of the patient should be respected.
No one should “protect” the patient from “false” deci-
sions, in case he/she is competent in making them.
While some areas to be assessed are easily exam-
ined (e.g., neurocognitive function), other areas like
the retention of values or judgment and reasoning
are problematic. One area that has not been studied
extensively is awareness of financial skills. The ability
to assess awareness in this domain would be of par-
ticular value because there are many and significant
risks involved in making poor financial decisions and
there is a great demand by family members and car-
egivers, legal representatives for financial incapacity
assessments (Silberfeld, 1995).
Various measures (Goel et al., 1997; Loewenstein
et al., 1989) are available that assess the ability to
identify and count currency, complete cash transac-
tions, write cheques, balance a cheque-book, and un-
derstand a bank statement. However, these measures
only assess the ability to complete financial tasks and
do not examine the subject’s understanding of the
situation and the risks, benefits and alternatives as-
sociated with the decision (Cramer et al., 2004).
 Testamentary and financial competence issues in dementia
4 Methods to test testamentary and financial
competence in dementia
Unfortunately there is no gold standard by which to
determine competence to make a complex decision.
Of course the use of a neurocognitive screen, such as
the CAMDEX-R is highly recommended but is gener-
ally not predictive of decisional capacity. Especially
when depression is present, patients may appear
even more disable, but this is not by definition irre-
versible. On the contrary the presence of delusions
or hallucinations may render the patient completely
incapable of decision making, although sometimes
this depends on the content and the context of the
appearance of psychotic symptoms.
The assessment of competence in the elderly is
an assessment of general and specific functional abil-
ity and not merely the establishing of a diagnosis.
Sometimes, the circumstances and clinical features
of the case will make intensive and extensive study
necessary to form a well-considered opinion.
An opinion with respect to competence must re-
flect consideration of functioning in the present and
in the recent past, as well as, the future implications
implicit in the diagnosis. The clinical state of compe-
tence is of course subject to change (MacKay, 1989).
A list of areas that should be tested and evaluated in
order for the expert to arrive at a conclusion is shown
in Table 1. The list includes all important suggestions
found in the literature (Arie, 1996; Bassett, 1999; Ben-
nett and Hallen, 2005; Cramer et al., 2004; Fazel et al.,
1999a; Heinik et al., 1999; Lieff et al., 1984; Regan and
Gordon, 1997; Sahadevan et al., 2003).
An important complementary approach to as-
sess the patient’s awareness of deficits is to compare
patient’s self-reporting to the reports of a close fami-
ly member or friend (Fleming et al., 1996). Of course
the underlying assumption is that individuals lacking
awareness of deficits have unreliable and distorted
self-perceptions and the accounts of the objective
raters are accurate. The problem, however, is that
one should also take into account the interest these
people have in the patient’s estate.
5 Conclusion
Although during the recent few decades mental
health professionals and the public increasingly
face more problems concerning the competency of
the elderly with greater frequency, especially when
they suffer from dementia, much research remains
to be done in this field. Also it seems that both pro-
fessionals and families of patients are insufficiently
informed about competency issues. It has been re-
ported that the children of demented patients are
poorly informed as to the legal status of their par-
ents’ financial position in spite of the fact that all feel
they need assistance. Most of them would welcome
the help of professionals (al-Adwani and Nabi, 1998).
Unfortunately the same picture is reported for health
professionals, many of which remain unaware of the
provisions of the legislation and are unclear about
what information will be required (Bennett and Hal-
len, 2005). All health professionals should know that
when a person is in hospital, nursing center or simi-
lar facility, especially when this happens because of
a mental disorder, should never sign any document
without the knowledge and permission of the doctor
in charge. This should be an absolute rule but still it
is not included in most ward information booklets
given to patients and relatives.
73
Chapter 7: K.N. Fountoulakis and K. Despos

Table 1. List of areas to be examined and basic guidelines when assessing the financial and testamentary competency of a de-
mented patient (Arie, 1996; Bassett, 1999; Bennett and Hallen, 2005; Cramer et al., 2004; Fazel et al., 1999a; Heinik et al., 1999;
Lieff et al., 1984; Regan and Gordon, 1997; Sahadevan et al., 2003)

Basic psychiatric interview

Delusions (especially when directly influence decisions)
Hallucinations (especially when giving commands)
Basic neurocognitive evaluation (with the use of tests)
Orientation
Memory (especially the patient must remember family members and other significant persons,
must be able to keep track of financial transactions and decisions)
Language (expression/comprehension of speech and written language)
General knowledge (especially concerning financial issues, depending on status)
Calculating ability
Judgment and reasoning (especially changes from premorbid ability)
Evaluation of the context
Retention of personal values and goals
Consistency of decisions, stable choices
Understand the nature of the act being undertaken
The extent of the property involved
The legal heirs and all who might reasonably have a claim
The choices available
What are the specific consequences of the decision (e.g., how the property is distributed)
Assessment of premorbid functioning
Family, friends and business associates should be asked about the patient’s past and present level of function
(the clinician should have in mind potential conflicts of interest)
Process guidelines
All relevant information should be presented in short and simple sentences.
After each “input” of information, the patient is asked to tell the meaning.
Assist the patient in considering what he/she thinks will be the consequences of his/her decisions.
The assessment process may take much time and usually can not be rushed.
The demented patient’s authentic wishes should be respected and not over-ruled in the interests
of what family or staff feel is best for him/her
Neuropsychological/Psychometric testing
CAMDEX-R (for global cognitive evaluation)
Trail Making Test (for general mental functioning)
Measure for assessing Awareness of Financial Skills (MAFS)
The Testament Definition Scale (TDS)

74
 Testamentary and financial competence issues in dementia
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financial competence in the elderly. Can Med Assoc J 130:
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Shulman KI, Cohen CA, Hull I (2005) Psychiatric issues in ret-
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of anosognosia in Alzheimer’s disease. J Neurol Neurosurg
Psychiatry 61: 485–90
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Chapter 8
ASSESSMENT OF COMPETENCY AND ADVANCE DIRECTIVES
Julian C. Hughes
1 Introduction
A discussion dealing with competency assessment
and advance directives might best begin by adress-
ing the concept of competence. The assessment of
competence would then lead us to consider the defi-
nition and the criteria that have to be met in order
to say someone is competent. In this case we are
considering the idea of competence to complete an
advance directive; so having stipulated the criteria,
we should then consider what would constitute an
appropriate test of this competence in accordance
with these criteria. However, we should start, not
just by thinking about advance directives, but also by
thinking about their ultimate objectives: what is the
end or aim of an advance directive? Afterwards, we
shall hopefully have gained a perspective that ena-
bles us to say more about competence with respect
to advance directives. I shall argue that we need the
broadest possible view, which will amount to a per-
spective of the person. In which case, the assessment
of competence will seem less like a test of the legal
notion of decision-making capacity and more like an
evaluative interpretation involving the person’s nor-
mative narrative.
2 The end of an advance decision
The aim or point of an advance decision might seem
quite straightforward. If I am concerned now that I
should not be kept alive if, in the future, I were to have
a massive stroke, I can stipulate this in an advance
directive, or (more formally) an advance refusal of
treatment. The aim, therefore, concerns the future.
This decision process, however, immediately raises
complications. For, if the aim is to control the future,
it is to be controlled by the present. Another way of
putting the aim, therefore, is to say that the advance
directive is all about how my present wishes should
be enacted in the future. However, this line of reason-
ing would imply that the aim has at least as much to
do with the present as it does with the future.
This might not pose any sort of difficulty: my
clear present wishes might turn out to be fully ap-
plicable to the circumstances that arise in the future
and so my advance directive is enacted. However,
even trying to put things in as practical and straight-
forward a manner as this does not satisfy what we
were hoping to achieve. I need to add that my clear
present wish is fully applicable to the future circum-
stances and that the present wish remains my clear
wish in the future. There is nothing wrong with this,
of course, as it may well represent the truth. It does,
however, impose an obligation on clinicians, to make
sure that the previous wish would still be the present
wish. For this reason the Mental Capacity Act 2005,
which governs the law in England and Wales from
2007, states that an advance decision is invalid if the
person has done anything that is inconsistent with
the previous refusal of treatment. For similar reasons
the Act states that the specific circumstances of the
advance refusal must obtain and that, if there have
been any changes in circumstance not anticipated
when the advance refusal was made that would have
affected the person’s decision, then the advance re-
fusal is not applicable. A complicating issue, there-
fore, is the finding that people’s preferences for life-
sustaining treatment increase as cognitive function
worsens (Fazel et al., 2000). All of this, therefore, has
Chapter 8: J.C. Hughes
to be considered very carefully: in practice the par-
ticular details of individual cases will be vital.
There is still, however, a conceptual problem. In
a preliminary manner, I previously concluded that
the aim of advance decisions has at least as much to
do with present wishes as with future actions. But I
went on to stress how essential it was that the present
wish should remain the clear future wish. Therefore,
the main point seems to be the connection between
the present and the future wish. However, the essen-
tial point is the future wish – and the present wish
only inasmuch as it sheds light on the future wish.
This function of shedding light is nonetheless crucial
given that, when the decision has to be made, what is
deemed to be best might be surrounded by darkness.
The advance directive then comes into its own as a
guide.
To return to the idea of the connection between
the present and the future wish, the conceptual point
(but one with considerable practical relevance) con-
cerns how this connection is maintained. The situa-
tion will be this: the doctors and nurses stand around
my bedside after my major stroke debating how far
to go in their attempts to keep me alive. They cannot
know my present wishes. (For the sake of the argu-
ment this has to be presumed, but it’s a weighty pre-
sumption.) They know my past wishes, but to what
extent do my past wishes affect what my present
wishes would be if I were able to communicate them?
What is the connection between the past wishes and
what would be my present wishes?
The rather jejune point to make is that the con-
nection can hardly be regarded as the piece of paper
on which the advance directive is written, even if in
extreme cases it might be all that the clinicians have
to go on. But this alone is also not the whole story.
Perhaps the advance directive has been renewed
every year for the last twenty years and the views it
expresses have been discussed fairly frequently with
my family and close friends. In short, the connection
between the past wishes and the present wishes is
more substantially maintained by the fullest possible
account of the person’s story or narrative. Accord-
ingly, the end of an advance decision becomes the
78
end of a story. And the authenticity of the ending will
depend in large measure on the accuracy and detail
of the story.
3 The underpinning person
My contention is that we must understand the per-
son’s story as fully as possible in order to understand
whether the ending is, in some sense of the word, au-
thentic. (But the exact sense of “authentic” with re-
spect to advance directives is difficult to pin down: it
certainly does not equate to “reasonable” or “ration-
al”, see Vollmann, 2001.) A purely ethical question is:
is the decision to withhold treatment right (is it the
moral thing to do)? It is interesting to note how un-
derstanding the person’s story interrelates with this
question. If we can understand the person’s story
right, so that the ending is as authentic (as in keep-
ing with the person’s life) as possible, we are likely to
make the morally correct decision. Once again there
is a caveat to be added, to which I shall return.
For now, however, there are two points. First,
there is a connection to be made between the narra-
tive and the decision at the end of the person’s life.
There is a sense in which the narrative carries nor-
mative weight. In other words, it is not simply that
there is a story that has an ending; rather, only some
endings will be right, true, or authentic. The story
leads us in some direction or other and the ending
cannot be simply gratuitous, not if it is to be the right
ending (although there is no reason to presuppose a
single possible right ending). There is some element
of normative constraint embedded in the narrative
concerning how things might go.
This leads to the second point, which is that
correctly understanding the person’s story, so that
we make the right moral decisions, entails that we
understand the person. Even if not determinative
of the decision at the end of the person’s life, almost
any detail might be relevant so that clinicians making
these sorts of decision need to be as open as possi-
ble to every facet of the person’s makeup. This is part
of what it means to act in the person’s best interests.

Underlying the aim of advance directives is a require-
ment that we take the unique individual person se-
riously, that we recognize the multifarious ways in
which he or she might be situated.
Hence, we need to see human persons as situ-
ated in a personal history; but also as embedded in
social, cultural, historical, legal, moral and spiritual
fields. The number of different ways in which people
are embedded is a reflection of the uncircumscrib-
able nature of personhood (Wiggins, 1987). This is
a notion that cannot be finally pinned down, but re-
quires a broad view (Hughes et al., 2006a). The fuller
description of us as persons – a description that ac-
cording to the account being proposed remains valid
even in severe dementia – includes our embodied
agency (Aquilina and Hughes, 2006). The notion of
agency links to autonomy and it might be thought
that this is the central notion in connection with
advance directives. They are, after all, a way to exer-
cise autonomous choice ahead of a time when it is
otherwise no longer possible. However, it is situated
embodied agency (Hughes, 2001), which stresses the
extent to which our agency is circumscribed by the
realities that surround us as individuals.
This is the caveat to which I had promised to
return. It might have sounded as if all we had to do
to make the morally correct decision was to under-
stand the person’s story. But necessarily the person’s
story is also located in a multitude of fields. The per-
son might yet be evil or ill, so that we can neither say
that just any story has to be accepted, nor any ending.
Meanwhile, the notion of being embodied must not
be understood in too facile a fashion. In severe de-
mentia it increasingly becomes the only way in which
the person’s subjectivity can be expressed (Matthews,
2006). It may indeed be that we have to interpret bod-
ily movements as being meaningful within a particu-
lar context.
“Even in advanced dementia, when rational,
verbal, and emotional communication is largely
absent, there are still communicative methods of
importance left. The only way to communicate
with these patients is via their body. This means
Assessment of competency and advance directives
that one must explicitly pay attention to the bod-
ily way in which persons with dementia ‘are in
the world’” (Dekkers, 2004).
Thus, to understand whether the ending is authentic,
we need to be attuned to the normative nature of the
person’s narrative and this will involve some form of
engagement with the individual’s nature as an em-
bodied agent situated in multifarious and potentially
uncumscribable fields. The more such an engage-
ment has been realized, the more likely it is that deci-
sions at the end of the person’s life will be made in a
morally appropriate manner.
Where, however, does this leave the advance di-
rective? Inasmuch as the advance directive reflects
the normative nature of the individual’s narrative,
to that extent it will be useful. But this entails that a
judgement needs to be made about the standing of
the advance directive against the much richer back-
ground of the person’s whole life. In the UK, a Gov-
ernment discussion paper (Who Decides?) some years
ago put it this way:
“The advance statement is not … to be seen in
isolation, but against a background of doctor/
patient dialogue and the involvement of other
carers who may be able to give an insight as to
what the patient would want in the particular
circumstances of the case” (Lord Chancellor’s
Department, 1997).
This view seems to be in keeping with the views of
some of those who advocate the importance of a nar-
rative understanding.
“From a narrative perspective, a person’s identity
is formed in stories, which both express and cre-
ate the unity of a person’s life. As stories, advance
directives presuppose the unity of the patient’s
life, and try to contribute to that unity, not by
making the different phases identical, but by
trying to create a meaningful whole which cov-
ers all of them” (Widdershoven and Berghmans,
2001a).
79
Chapter 8: J.C. Hughes
This view does not make life easier for the decision-
maker; it increases the burden in that it highlights
the need for these practical judgements to be made
with the greatest of care, involving interpretation of
a whole raft of potential factors. But the unpacking
of personhood provides us with the connection we
were looking for between the past and the present,
because the agent (whose autonomous decisions we
should like to respect) is embodied and situated. The
person’s bodily history and location in a story, which
helps to constitute his or her self, is the connection
between the past and the present. The person’s situat-
edness is such that the present cannot be interpreted
in ignorance of the past and the past cannot ignore
the realities of the present.
Our excursion into the underpinning nature of
personhood, therefore, leads us to see the advance di-
rective in context. The broader view makes plain the
continuing ethical imperative that decisions at the
end of a person’s life, even with an advance directive,
ought still to be regarded as problematic rather than
in any sense run of the mill. Precisely because of the
complexities around the notion of personhood in de-
mentia (Hughes et al., 2006b), these decisions cannot
be taken in a light minded fashion.
4 Judging advance directives
Having considered the aim of advance directives
within the broader context of personhood, let us re-
turn to the notion of competence. What should be the
criteria by which a judgement about my competence
to complete an advance directive should be made?
In England and Wales, from April 2007, the simple
answer is supplied by the Mental Capacity Act 2005.
Setting aside the important principles that capacity
must be presumed and so on, the criteria that have
to be fulfilled to state that a person has the capacity
to make a decision are that he or she can recall, un-
derstand and weigh up the material information and
communicate the decision. If we ignore ( for now)
the point that these rather objective factual-looking
criteria yet conceal subjective evaluative judgements
80
(especially as regards what it might be for the person
to weigh things up), the matter looks straightforward.
If I can recall and understand that what I am now do-
ing is stating that if, in the context of severe demen-
tia, I were to stop eating I would not wish to be fed by
any artificial means, and if I am able to demonstrate
that I can communicate and weigh up the pros and
cons of this decision, then I have the capacity to make
the advance directive to this effect. On the face of it
this does not seem to raise enormous problems for
assessing competence.
However, in the Mental Capacity Act 2005 (and I
am presuming that legislation in other jurisdictions
would raise similar issues) the details concerning ad-
vance decisions make a difference in terms of what
the person making the advance refusal of treatment
needs to understand. The main point is that the ad-
vance directive must be specific and it can only come
into effect under the very specific circumstances en-
visaged. So what if, even in the context of severe de-
mentia, I were to stop eating for what seemed likely
to be a transient period? Perhaps an intercurrent ill-
ness means that I am in too poor a condition to eat
and without artificial feeding I might die, but I am
more likely just to be ill for longer. Was this the sort
of situation I had in mind when I completed the ad-
vance directive? If not, can it still be said that I was
competent to make the advance directive that I did?
If it was what I had in mind, but I did not stipulate
it, does that in itself show a lack of capacity (or was
I presuming that people I trust might make the finer
decisions for me)?
It might be tempting to try to come up with an
example where there could be less room for equivo-
cation, cardiopulmonary resuscitation (CPR) for in-
stance. Say I stipulate that I would never wish to re-
ceive CPR under any circumstances, how should this
be interpreted? If I have made this advance directive
today, whilst fit and well, and then I am involved in an
accident tomorrow, this is not a circumstance that I
might have foreseen and there may well be reasons,
therefore, for doubting that I want the advance refus-
al to be honoured. Of course, there may be obvious
reasons for believing that this is precisely the sort of

circumstance that I had in mind; but this is to say that
we need a bigger picture: what did I mean or intend
when I wrote the advance directive? If I were to write
such a broad advance refusal, could it be said that I
had capacity to do so if there was no evidence that
I had considered such possibilities? Even if I were to
stipulate that in the context of moderate to severe
dementia I did not wish to have CPR, would I need
to show that I knew what moderate to severe demen-
tia might be? Otherwise, how could I be proclaimed
competent to make this decision? Say that I did stipu-
late what I meant by moderate to severe dementia,
but that when it came to it I did not seem to be in the
state that I had envisaged I would be in when I said
that I was against CPR, it is clear that on this ground
the advance directive could be declared invalid. But
does this also show that I was incompetent to make
this specific advance decision?
I should say, to be clear, that my inclination in
response to the questions I have posed is to equivo-
cate. In other words, under some circumstances it
might seem right to honour the advance directive
and in other circumstances right to ignore it. Simi-
larly, whether or not it would be appropriate to say
that I was incompetent to complete the advance
directive would require careful judgement. What
would be required would be the broader perspec-
tive. This is where being attuned to the normative
nature of the person’s narrative, engaging with the
person as a situated individual, comes into play.
Seeing the advance directive as thus embedded em-
phasizes the need for interpretation. It also suggests
that judging the requisite competence to complete
an advance directive must be a matter of judging
that the person making the advance directive is act-
ing authentically. The conceptual links between au-
thenticity and a person’s identity are complex (Rad-
den, 1996). Nevertheless, there is a clear sense in
which for a story to be authentic the ending should
ring true (like an “authentic cadence” in music). The
normative nature of the person’s narrative ensures
that certain endings will not be true and the point
of an advance directive is to guard against such dis-
sonance. Judging an advance directive, therefore,
Assessment of competency and advance directives
requires the broad narrative view of personhood
and judging a person’s competence to complete an
advance directive should entail an evaluative inter-
pretation concerning the authenticity of the decisions
being made. The question is not solely a factual one
about cognitive performance, therefore, but is also
one in which value judgements must play a role.
In short, for good conceptual reasons, our attempt
to ignore values in the assessment of capacity has
failed – and rightly so!
5 Judging competence
Now all of this is not without consequence. For in-
stance, doctors have concerns about implementing
advance directives and one potential remedy might
be if there were more certainty about the compe-
tence with which advance directives are completed
(Srebnik et al., 2004).
In a review of instruments to assess decision-
making capacity, Vellinga et al. (2004a) identified two
papers that assessed competence to complete an ad-
vance directive. The first, by Barton et al. (1996) made
use of the Hopkins Competency Assessment Test
(HCAT). The second study involved a semi-structured
interview using case vignettes (Fazel et al., 1999). Fa-
zel et al. (1999) pointed out that an earlier study (Sil-
berfeld et al., 1993) had suggested criteria to test the
capacity to complete an advance directive, focusing
on whether the person could understand its nature
and purpose. But, as Fazel et al. (1999) comment, this
“does not assess whether an individual is capable of
understanding actual possible future clinical situa-
tions”; nor does the HCAT, also used by Janofsky et al.
(1992). As Fazel et al. (1999) state, understanding ac-
tual possible future clinical situations “is critical to
competently completing an advance directive”. Vel-
linga et al. (2004a) agree: “Because advance directives
consider hypothetical future situations by definition,
the hypothetical character of vignettes is very similar
in concept”.
A more recent study has used a semi-structured
tool, the Competence Assessment Tool for Psychi-
81
Chapter 8: J.C. Hughes
atric Advance Directives (CAT-PAD), to assess com-
petence to complete an advance directive (Srebnik
et al., 2004). The study suggests that the instrument
has reasonable psychometric properties and that
most of a population of people with severe mental
health problems (with a mean age of 41.9 ± 9.3 years)
were competent to complete an advance directive.
Recognizing that there is no consensus on the degree
of capacity required to write an advance directive, the
authors of this study were against the use of rigid cut-
off scores. They recommended instead that the indi-
vidual abilities tested should be considered, because
failure in one component (understanding, reasoning,
appreciation or evidencing a choice) might render
the person incompetent.
In response to this paper, several points need to
be made. First, exactly how realistic the choice pre-
sented to the participants was is in question. It was
about whether or not someone should be hospital-
ized; but whether this was a realistic choice for the
participants is not clear. This is important because of
evidence that whether the situation to be discussed
is realistic or not might have an effect on decision-
making capacities (Vellinga et al., 2005). Secondly,
we have already noted that people’s views change, for
instance in the context of worsening cognitive func-
tion (Fazel et al., 2000). Although it makes sense to
complete an advance directive early, the worry about
competence will often arise later when cognitive
impairment is more of a reality and the relevance of
Srebnik et al. (2004) to this population is question-
able. Finally, as the authors themselves recognize, the
CAT-PAD focuses on cognitive function related to de-
cision-making, whereas volitional factors need to be
considered too.
But these studies raise other difficulties. For
instance, there is good evidence that different phy-
sicians, and physicians compared to family mem-
bers, and both of these groups in comparison with
a vignette, can reach statistically different opinions
about competence (Vellinga et al., 2004b). It may
well be that context is very important: this was cer-
tainly the conclusion I reached above on conceptual
grounds, but it is also seen in Vellinga et al. (2004b)
82
where there was better agreement between the as-
sessment of competence as judged by a vignette ap-
proach and as judged by the family compared to the
judgements of physicians. But the physicians were
more lenient, tending to regard people as compe-
tent. The interesting point is that there is no objec-
tive way to judge between these groups. Hence, the
judgement about competence needs itself to be seen
as a situated judgement, in which the importance
of values is recognized. The task then becomes one
of carefully negotiating between differing values,
which is the essence of values-based practice (Ful-
ford, 2004). Moreover, this sort of negotiation, which
must start with an attempt to understand the other’s
meaning, is relevant even at the stage of assessing
competency to complete the advance directive in
the first place.
Furthermore, whilst attempting to assess an in-
dividual’s understanding of “actual possible future
clinical situations” (Fazel et al., 1999), it has to be re-
called that what is really at issue is that the person’s
present wish should remain his or her settled wish in
the future and, therefore, that the requisite compe-
tence to complete an advance directive is a matter of
judging that the person making the advance direc-
tive is acting authentically. This then starts to count
against the more legalistic conceptions of an advance
directive and instead stresses the communicative na-
ture of the decisions, which might mean that some
advance directives should not even be considered
(van Delden, 2004).
6 Conclusion
Judging competence to complete an advance direc-
tive is a matter of judging that the person making the
advance directive is acting authentically. I reached
this conclusion by considering the end that advance
directives aim at: some form of authentic cadence,
requiring that those involved are attuned to the per-
son’s life. The view required is a broad one, because
persons must be understood as embedded in a vari-
ety of fields. Tests to assess competence to complete

an advance directive have to be judged against this
broad canvas of individual authenticity.
The worry that “authenticity” is itself too hard
to pin down and might collapse into some form
of paternalistic best interests (Holm, 2001) errs in
that it takes “authentic” simply to mean to fit into
or continue a pattern. For there will be a variety
of ways in which the ending might ring true. Some
of these, at least at first blush, will be unexpected.
What is required is that the advance directive is re-
garded, not as a simple rule or legal dictate, but as
a way of fostering understanding of “the interpre-
tative and intersubjective aspects of decision-mak-
ing … [A]s communicative tools, they may … give
structure to shared ways of dealing with important
aspects of human life” (Widdershoven and Bergh-
mans, 2001b).
Just as judging an advance directive requires a
broad narrative view of personhood, judging a per-
son’s competence to complete an advance directive
must entail an evaluative interpretation concerning
the authenticity of the decisions being made. And the
basis of this interpretation can only lie in the inter-
connectivity of our narratives and our shared nature
as human beings in the world.
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Chapter 9
INFORMED CONSENT IN DEMENTIA RESEARCH
Anco vd Vorm and Marcel GM Olde Rikkert
The process of informed consent is a topic of ethical
debate because there may be a conflict of interests
between researchers and eligible subjects. Interna-
tional rules, such as the Declaration of Helsinki (last
revision, 1989), the Nuremberg Code (1947) and the
International Covenant on Civil and Political Rights
of the United Nations (1966), require free and in-
formed consent of research subjects. Recently, much
has been written about informed consent procedures
for medical research, but empirical data on how this
complicated process might be optimized in research
on elderly subjects are scarce.
International legislation requires that human
subjects must give truly informed and free consent
before participating in medical research. Despite
great similarities between national laws and inter-
nationally accepted ethical codes, research practice
is still highly heterogeneous, especially in dementia
research, which has to deal with the complex issue
of decline of capacity to consent (Olde Rikkert et al.,
2005). To reach a more uniform approach, more atten-
tion to the informed consent procedure is required in
demented subjects, even more so because they often
also suffer from problems in hearing, speech, and vi-
sion. Assessment of the capacity to consent often is
the first step in research in subjects with known cog-
nitive decline. Subjects judged as incapable to con-
sent must be excluded or consent by a third party
(proxy) must be obtained, if this is possible accord-
ing to applicable legislation. However, up till now
there are no well- accepted standards for uniformly
determining capacity to consent (Hearnshaw, 2004).
Next, the information given should be matched to the
reading ability and comprehension of the elderly sub-
jects studied and the proxies involved (Appelbaum
and Grisso, 2001). This also requires an assessment
of mental status, hearing, speech and vision before-
hand.
1 Introduction
The approval of a study by the responsible ethics
committee should guarantee, amongst others, quali-
ty control of this complex consent procedure. How-
ever, ethical review boards rarely specifically address
the procedure used for assessment of capacity to
consent. In papers written on research in the elderly,
the issue of capacity to consent procedures is de-
tailed specifically in only very few of the studies (Olde
Rikkert et al., 1996). In our survey of the literature, the
frequency in which information on informed consent
by the responsible ethics committee were published
was unexpectedly low, though the general public, edi-
tors of scientific journals, granting research counsels,
and patient organisations emphasize the importance
of this subject.
An important new law in this field is the last
and recently amended version of the Guidelines for
Good Clinical Practice (GCP). These guidelines are
now formally accepted as the new EU Directive (Di-
rective 2001/20/EC), after having been approved of
by the European Committee in December 2000. From
May 2004 this guideline was implemented in all EU
countries. The new GCP guideline increases the re-
strictions for research on subjects who are incom-
petent to consent. However, this new GCP-directive
introduces multiple terms that may be interpreted
and implemented in many different ways (e.g., re-
search “directly related to a debilitating condition”,
Chapter 9: A. vd Vorm and G.M. Olde Rikkert
“life threatening condition” and “grounds for expect-
ing benefit”). This may even increase the heteroge-
neity both in the ethics committee’s conclusions on
research in dementia and in the professional’s judge-
ments on capacity to consent, instead of diminishing
the differences in interpretation.
However, the growing attention to informed
consent by regulatory bodies, requires researchers
to invest much time, energy and creativity in inform-
ing elderly subjects appropriately to allow for free
and autonomous decisions. Ultimately, informed
consent has to be obtained from a sufficient number
of subjects to meet sample size requirements. In
this chapter we will give an overview on how this
important goal can be reached efficiently in demen-
tia research, to enable good quality research with
high clinical relevance for dementia care, while at
the same time safeguarding the interests, legal and
moral rights of these vulnerable subjects with cogni-
tive decline.
2 Epidemiology of consent
To explain highly sophisticated research techniques
as commonly used in current medical research, to
dementia patients, who are generally born in an era
in which medicine was mostly “handmade”, is a for-
midable task. The omnipresence of cognitive deficits,
often accompanied by visual, auditory and language
deficits in this population constrains acquiring, un-
derstanding and adequately weighing the informa-
tion provided by the researcher. Much has been pub-
lished on the informed consent issue with regard to
geriatric research and on specific subtopics such as:
decision making capacity, voluntariness, disclosure,
understanding, consent forms, authorization poli-
cies, and others (e.g., see review of Sugarman et al.,
1998). Diminished understanding of informed con-
sent information was associated with older age and
fewer years of education. Older age was also associ-
ated with decreased participation in research. Elderly
patients and patients with below average IQ, impaired
cognitive functions, and an external locus of control
86
had poor information recall of the imported issues
related to the research (Lavelle et al., 1993). However,
specific studies on the issues of informed consent in
dementia research are scarce. The firmest conclusion
from such empirical studies is that the diagnosis of
dementia does not tell very much about capacity to
consent. Capacity to consent depends both on the
cognitive capacity of the subject and the complexity
of the study. In a longitudinal study of healthy aging
and dementia, with both demented (n = 250) and
nondemented (n = 165) participants, all non-dement-
ed and very mildly demented participants and 92%
of mildly demented participants provided a sufficient
number of correct answers for the test of capacity to
consent (Buckles et al., 2003). Demented individuals,
in very mild and mild stages of dementia, understood
informed consent information for this non-therapeu-
tic study. In general, understanding notably declined
in the moderate stage of dementia. Because of the
changes in time in capacity to consent in dementia
subjects, there is a great need for valid, reliable and
efficient instruments to assess capacity to consent,
which we will address next.
3 Assessing informed consent
The decision whether a potential subject is compe-
tent or incompetent is a necessary and crucial part
of conducting medical research in the elderly. The as-
sessment of competency is required by the legal and
ethical frameworks in which the research occurs.
It is well known that the diagnosis of dementia does
not mean that a person is incompetent to consent.
Therefore, both in clinical practice and in dementia
research it becomes increasingly important to be
able to judge the capacity to consent on an individual
basis.
Several instruments are available for the clini-
cal evaluation of competency to consent. Classically
what is needed at least for competent judgement is
summarized as:
(1) ability to evidence a choice, (2) ability to
make a reasonable outcome of choice, (3) ability to

understand information, (4) ability to manipulate
information, (5) ability to appreciate the situation
and its consequences. In a recent review Vellinga et
al. showed that all well-validated instruments used
to assess competency to consent aimed at covering
these topics (Vellinga et al., 2004). The best-validat-
ed instrument currently available proved to be the
MacArthur Competency Assessment instrument,
which is available both for research aims and for
clinical practice. The MacCAT-CR is the instrument
for the assessment of decision-making capacities
to participate in clinical research. It was developed
by Applebaum and Grisso, with support from the
Research Network on Mental Health and the Law
of the MacArthur Foundation (Grisso et al., 1997).
A MacCAT version for treatment related decision
making is also available (MacCAT-T), as well as a
version to assess voting capacity. All three MacCAT
instruments are based on asking critical questions
to the subject whose competency should be judged.
These questions address understanding of the re-
search information, reasoning, appreciation of the
choices, and finally making a choice. The MacCAT
instruments showed good validity and reliability
(Karlawish et al., 2002; Vellinga et al., 2004). Only the
feasibility for wide spread use in clinical practice is
questionable, because one needs 30–60 min to apply
the instrument, and more importantly, it will take
training and specific expertise before the MacCAT-
instruments can be used. However, the central idea
of the MacCAT instruments, which consists of ask-
ing structured questions crucial for competency to
consent, can be applied in most consent procedures
rather easily.
A domain, which is not covered by the MacCAT
and all other assessment instruments, is the moral
capacity of a subject, nor the emotional ability to
make a sound decision, which is in line with the life
history of a subject. Moral capacity overlaps with de-
cision-making capacity, but is not fully contained by
it. Cognitively impaired persons, judged as incapable
to consent by the available instruments, for example
subjects with dementia, may still be able to make
morally responsible decisions, based on a remaining
Informed consent in dementia research
sense of both decision making and their personal his-
tory. A full discussion of the field of moral capacity
to consent, which is still highly debated, is beyond
the scope of this chapter. However, it is clear that de-
pressed elderly subjects and elderly with personality
disorders, for whom personal history is often com-
plex, require special geriatric psychiatry expertise
both in the assessment of capacity to consent, and in
the consent procedure as a whole.
To conclude, in a proper and state of the art as-
sessment of the capacity to consent to research, the
application of the best that competency assessment
instruments brought us (if possible the Mac-CAT-CR
or second best asking the right questions to check for
competency on specific issues), should be combined
with knowledge of the patient’s hopes, beliefs and
personal history. Only weighing and evaluating the
results of the formal assessment of capacity to consent
and the evaluation of personal values, can result in a
valid answer to the question whether a subject is fully
competent to consent in the legal sense of the word.
Next, the invasiveness, risks, and burden on the one
hand, and the profits of the study on the other hand,
should be weighed carefully, to determine the level
of capacity to consent needed for a specific study.
The more risky and burdensome, the higher the re-
quired standards of consent will have to be. The more
profit and the lower the burden of a study, the lower
the standards of capacity to consent may be. This is
called the principle of proportionality of the criteri-
on of capacity to consent, which is a cornerstone of
proper research ethics (Table 1).
Finally, combining all these elements will guide
the researcher the way out in the clinical dilemma of
Table 1. The increase in emphasis on the quality of informed
consent and the capacity to consent needed for participation is
proportional to the risks and burden of a study
Research Minimal risk/ High risk/
burden burden
Non-therapeutic +++ ++++
Therapeutic + ++
Note: + to ++++: indicate that higher standards of capacity to
consent are required
87
Chapter 9: A. vd Vorm and G.M. Olde Rikkert
whether or not a subject with cognitive decline is ca-
pable to consent. The next challenge is how to involve
patients with cognitive decline as much as possible in
decision making, despite decline or even absence of
formal competency to consent.
4 Improving Informed consent
Helping the subject to understand research informa-
tion as fully as possible, and ascertaining how well
the subject understands it, is the first prerequisite for
a valid assessment of informed consent. Important
conditions to reach these goals are extensive time for
the information process, and matching consent mate-
rial in format and presentation to the cognitive, visual
and hearing capacities of frail elderly patients. So far,
most authors have focused on all kinds of visual and
hearing aids, such as: pictures, vignettes, storybooks
and audio- or videotapes. However, Tymchuk and
Ouslander showed that these aids proved a distrac-
tion rather than an aid for elderly subjects (Tymchuk
and Ouslander, 1990). Educational training was also
suggested as a method of enhancing decision-making
capacity. Awareness or if possible experience with the
diagnostic procedures, treatments or research meth-
ods, which are part of the study aimed for, will im-
prove competency to consent, especially in subjects
with cognitive decline and dementia (Olde Rikkert
et al., 1997).
Effective strategies to improve the understand-
ing of informed consent information should be con-
sidered when designing materials, forms, policies,
and procedures for obtaining informed consent. Oth-
er than empirical research that has investigated dis-
closure and understanding of informed consent in-
formation, little or no systematic research has exam-
ined how to improve informed consent in dementia
research. Efforts to improve understanding through
the use of multimedia and enhanced consent forms
have had only limited success (Flory and Emanuel,
2004). Having a team member or a neutral spend
more time talking one-by-one to study participants
appears to be the most effective available way to im-
88
prove research participants’ understanding (Flory
and Emanuel, 2004). There is no direct reason to alter
this conclusion for dementia research, but more re-
search is highly needed here.
5 Way out in research practice
To research a sufficient quality of informed consent
and to stimulate and not frustrate dementia research
a joined task force is needed from researchers, jour-
nal editors, ethical review boards, politicians, grant
givers and Alzheimer’s disease societies. Alzheimer
Europe made a clear policy standard on the research
ethics in dementia research including informed con-
sent issues (Appendix). Here we addressed the chal-
lenge that researchers have to meet when acquiring
informed consent from demented subjects in an ethi-
cally sound manner. Researchers will not only have
to deal with dilemma’s in trial design and outcome
variables, but also have to invest time and effort in
the acquisition of a proper informed consent, after a
more formalised and probably witnessed assessment
of the capacity to consent.
Currently, researchers should be advised to
adopt a step-wise procedure, which starts with suffi-
cient time and effort in the handing over the informa-
tion on the study aimed for. If feasible, a trial run of
the research aimed for might help to improve under-
standing of the study procedures in demented and
depressed subjects as well as in subjects without psy-
chogeriatric illnesses. This is important because un-
derstanding of research information is a prerequisite
for weighing and appreciating the risks and benefits
of a study. The next step consists of asking whether
the fundamental issues needed for informed consent
are met by a potential research subject. The quality
of consent which is needed, is directly proportional
to the risk and burden of the study on the one hand,
and the profits on the other. In such a way, informed
consent can be judged irrespective of the diagnosis
made.
Generally, mentally incompetent subjects should
not be included in research, unless the research is

judged necessary to promote the health of the popu-
lation represented and this research cannot be per-
formed on legally competent persons. Moreover, such
research should be possible only if the physical and
mental condition that prevents obtaining informed
consent is a necessary characteristic of the research
population.
Special precautions are necessary if the subjects
with cognitive decline are judged to be incapable to
consent, and did not sign an advance directive in
which they state to want to participate in dementia
research. For a research subject who is under legal
guardianship, the investigator must obtain informed
consent from the legally authorized representative in
accordance with applicable law. This should even be
added to a positive advance directive.
In general, for dementia research we advocate a
dual consent procedure, in which the researchers ac-
quires consent of the patient, if capable to consent, as-
sent (i.e., agreement as far as the study is understood
and weighed) of the patients who are judged not ( ful-
ly) capable to consent, and informed consent by the
proxy. In the literature a lot of terms are used to de-
scribe the procedure in which a third party consents
for someone else, most often a relative. “Substituted
judgment”, “proxy consent” and “surrogate consent”
are used to describe this process. Although there may
be differences between them, the main characteris-
tics are (1) that a person consents for someone else
and (2) that this method of soliciting consent is used
to extend the subject’s autonomy. Several arguments
can be given in favour of third party consent. Most
arguments are in some way related to the argument
that third party consent respects the autonomy of the
patient/research subject as much as possible. A per-
son other than patient/research subject consents on
behalf of him/her. By this means the research subject
can to some degree participate in the decision via
his/her “surrogate”.
In general, persons who have most interests – for
example because they are responsible for daily care –
are most involved in the decision. These people who
are caring for the patient probably (more likely than
others) want the best for the patient (Hardwig, 1993).
Informed consent in dementia research
Those who are close to the patient are generally most
knowledgeable about what the patient would have
wanted (Hardwig, 1993).
Kim et al. (2005) showed that participants in a
research study did not shift the burden of research
onto others (whether society or loved ones). In addi-
tion, it was observed that respondents are cautious
in their attitude when they are responsible for their
loved ones.
In sum, researchers have to meet the serious
challenge of an adequate informed consent proce-
dure, in case they want to carry out studies on the
vulnerable subjects with cognitive decline or with
dementia. Apart from the obligations expressed by
research councils’ and journals’ guidelines, research-
ers should be fully aware of the societal and scientific
responsibilities they bear in this type of research with
fragile subjects. It is highly relevant that relevant de-
tails of the assessment of capacity to consent and of
special measures applied in informing the elderly are
published as well. A good consent procedure should
be regarded as important as the research design,
or the selection of the intervention or the outcome
measures in dementia research, by all professionals
involved. Ethical research committees and the pa-
tients’ and carers’ societies are in the best positions
to help researchers meet the great challenge of rel-
evant, but at the same time ethically sound dementia
research.
Appendix
Summary of position paper on research with people with de-
mentia (www.AlzheimerEurope.com)
The present paper constitutes the input of Alzheimer Eu-
rope and its member organisations to the ongoing discussions
about the participation of people with dementia in research
and in particular the Council of Europe Convention on Bio-
medicine and Human Rights and the Draft Additional Proto-
col to the Convention on Biomedical Research.
For the participation of people with dementia in clinical
trials, the organisation refers to the specific position paper it
has adopted with regard to this question.
Alzheimer Europe would like to recall a few general prin-
ciples which guide this present response:
89
Chapter 9: A. vd Vorm and G.M. Olde Rikkert
• A diagnosis of dementia does not in itself constitute a
lack of legal capacity.
• Capacity is not an all or nothing affair. People with demen-
tia should therefore be involved in decisions concerning
research even if they are considered “unable to consent”.
• People with dementia have a right to participate in re-
search, should they so desire.
• People with dementia should be encouraged to write
advance directives covering the issue of participation in
research.
• Subject to the fulfilment of certain conditions, a legal
representative should be allowed to consent to partici-
pate in research on behalf of a person with dementia who
is no longer able to consent him/herself (provided that
they take into account his/her past and present wishes).
On the basis of these principles, Alzheimer Europe has devel-
oped the following position with regard to the participation of
people with dementia in research:
• In the early stages of the disease, people with dementia
can themselves consent to research or declare their will-
ingness to participate in research in an advance directive
– irrespective of whether such research is likely to entail
a direct personal benefit.
• A doctor with the relevant expertise and who is not
linked to the research should assess the level of capacity
of the person with dementia in order to ensure that s/he
has sufficient mental capacity to take such a decision
and is fully aware of the consequences.
• Legal representatives should be able to consent on be-
half of people with dementia to participate in research, if
the following main conditions are met:
– the potential benefit for the person’s health is clear-
ly greater than the possible risks;
– the risk of causing discomfort or distress is mini-
mal; the research has been approved by an inde-
pendent ethics committee;
– the same results could not be obtained with other
subjects;
– the legal representative does not benefit financially
from the decision;
– s/he has been specifically authorised to give con-
sent by a court or the person with dementia;
– the necessary safeguards have been taken to pro-
tect the privacy of the person with dementia and to
respect his/her dignity.
• In all cases, an independent adviser should be appointed
with responsibility for the safety and welfare of the par-
ticipants.
90
Based on its current information, Alzheimer Europe does not
endorse the participation of people with dementia in research
without a potential benefit for the participants unless the per-
son with dementia decided to participate him/herself and
had sufficient capacity to make such a decision. Such decision
could have been stated in an advance directive.
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Chapter 10
ASSESSMENT OF FITNESS TO DRIVE, POSSESSION OF PROFESSIONAL DRIVERS’
LICENSE, POSSESSION OF FIREARMS, AND PILOT’S CERTIFICATE IN CLIENTS
WITH DEMENTING CONDITIONS
Kurt Johansson and Catarina Lundberg
1 Introduction
There is a high degree of likelihood that impaired
cognitive functions affect traffic safety and traffic be-
haviour. The risk of crash involvement may increase
due to the cognitively impaired driver’s own mistakes
or his/her diminished ability to parry the mistakes
of other road users. Therefore, it is important, when
assessing memory impairment or dementia, also to
consider the issue of automobile driving, operating
trains or aircraft etc. The ability to take in and cor-
rectly process visual input is also an important ability
for hunters, which raises the issue of the possession
and use of firearms. Psychotic symptoms in a dement-
ed person entail a clear risk of shooting at imaginary
pursuers, or a depressed person may use the firearm
to commit suicide. Impaired cognitive functions do
not increase the crash risk only of drivers of automo-
biles, trains and aircraft, but, probably also for drivers
of mopeds and bicycles. Increased instability when
riding a bicycle is not seldom reported by patients at
our memory clinic (KJ, personal experience), but has
not been systematically investigated.
Judgement and insight are important functions
in the perspective of adaptation or restriction of ac-
tivities. One could say that a person’s unawareness
of his or her own limitations makes it impossible to
compensate for these limitations and therefore does
not lead to a limitation or cessation of driving.
From clinical experience we know that a cogni-
tively impaired person lacking awareness views him-
or herself as the good driver he or she has “always”
been. When relatives observe a deterioration of driv-
ing capacity and communicate this to the driver, this
often leads to a heated discussion. All the arguments
from the relatives are rejected and the driver is left
with a feeling of anger and resentment, but does not
make any changes in his or her driving. On the other
hand, relatives often can take measures to prevent
access to the car, for example by manipulating the
engine (removing the cable to the distributor etc.),
or even selling the car. But we have also seen some
cases where demented persons have bought a new
car instead of the “broken-down” old one. But, in the
opinion of the present authors, driving should have
been terminated a long time before the intervention
of family members because of an excessive crash risk.
However, there remains an important role for rela-
tives: that of preventing the patient from gaining ac-
cess to a motor vehicle.
A study by Hakamies-Blomqvist et al. (1996)
showed that the Finnish system of medically screen-
ing all license holders at the age of 70 did not im-
prove traffic safety. On the contrary, there was even
evidence that traffic safety was affected negatively
because potentially safe drivers stopped driving and
started using less safe modes of travel (by foot or bi-
cycle), thus becoming unprotected road users. One
possible explanation for this could be that security-
oriented drivers stop driving, but that those lacking
awareness of their impairments renew their licenses
and keep on driving with an increased crash risk.
Together with the results from a study by Johansson
and co-workers (1996), showing that a standard
medical examination cannot distinguish drivers with
collisions from either controls or driver with other of-
Chapter 10: K. Johansson and C. Lundberg
fences, these findings caused the Finnish government
to introduce a new law making the reporting of medi-
cally unfit drivers mandatory for physicians.
In some countries, such as Sweden and Fin-
land, physicians have the obligation to report unfit
drivers. In other countries, such as Spain, there is a
regular medical screening of older drivers. In some
countries, physicians must also report unfit firearm
holders. A screening procedure concerning all older
drivers/license holders has advantages as well as dis-
advantages. Among the advantages is the view that
the procedure is fair: all license holders are targeted.
In addition, for countries having an excess of physi-
cians, this gives job opportunities. Among the disad-
vantages is the fact that there are no really relevant
selection methods for screening (whether age-based
or diagnosis-based). In addition, as shown later in
this chapter, a useful cognitive screening battery does
not (yet) exist.
In addition, screening can be viewed as a waste
of resources, because the majority of screened drivers
are healthy, which makes the cost-benefit of screen-
ing low. The cost of the screening procedure places
a burden either on the individual or on society (both
of whom have limited resources). As an alternative
to general screening at regular intervals, it might be
possible to carry out a medical/cognitive evaluation
of those drivers who are involved in car crashes. This
would not only offer the opportunity to detect cogni-
tive impairment, but also other medical conditions
influencing traffic safety.
The EC directive on driver licensing (2006/126/
EC, Addendum III) does not mention dementia, nor
does it give any guidelines concerning cognitive im-
pairments. Regulations concerning drivers with cog-
nitive impairment or dementia differ between states.
Ideally, regulations should be based on a political de-
cision as to which level of elevated crash risk that can
be tolerated by society. (For example, it might be ar-
gued that persons with the disease X, who have twice
the risk of healthy drivers of their own age, can still
be accepted in traffic, but that persons with the dis-
ease Y, whose risk if multiplied by eight compared to
healthy drivers, should not be allowed to drive.) How-
94
ever, risk estimates presented in scientific literature
are not yet sufficient to constitute a base for such deci-
sions. The consensus meeting on Alzheimer and Driv-
ing in 1994 (Johansson and Lundberg, 1997) made the
recommendation that individuals with moderate or
severe dementia should not drive. Some authors ar-
gue that individuals with the diagnosis of dementia
should not drive (Dubinsky et al., 2000). And finally,
we also know, that individuals in a “preclinical state”
of dementia are overinvolved in crashes (Johansson
et al., 1997; Johansson et al., 1996). In consequence,
each member state of the EC must decide on its own
guidelines or regulations on dementia and driving. In
Sweden, for example, persons with dementia are not
allowed to hold driver’s licenses in group II. In group
I, however, possession can be allowed if the dementia
is in a mild phase and certain requirements on cog-
nitive functions are met (for details, see chap. 10 in
http://www.vv.se/filer/4796/9889eng000915.pdf).
2 The assessment of dementia or cognitive
impairments with respect to automobile
driving
When assessing persons with symptoms of demen-
tia or cognitive impairments, the health professional
must also take into consideration the possession of
a driver’s license etc. In addition, demands on health
and driving fitness are generally higher for holders of
licenses of higher categories (group II). This is rea-
sonable, since professional drivers have a higher ex-
posure to crash risk than drivers of private cars.
Whether local regulations require it or not, it is
advisable to document the possession of licenses of
all types in the patient file together with advice or
recommendations given to the patient etc.
Concerning the assessment of fitness to drive,
five different levels of assessment can be distin-
guished.
(1) A clinical assessment, based on the normal as-
sessment procedure for memory impairment/
dementia.
 Assessment of fitness to drive, possession of professional drivers’ license…
(2) Certain tests developed for the assessment of fit-
ness to drive
(3) Neuropsychological tests intended to assess
driving fitness
(4) Assessment in a driving simulator
(5) An in-car, in-traffic assessment
Levels 2–5 need specific competencies that are not
always available at the “memory clinic” when assess-
ing dementia symptoms. There is no “golden stand-
ard” against which to measure the predictive power
of different examination methods to determine
whether a patient is fit to drive. However an “on-road
test” in real traffic is commonly considered as a “gold-
en standard” despite several limitations.
2.1 Clinical evaluation by a physician at the
memory/dementia assessment unit
Here, the physician or the assessment team has ac-
cess to all material from the diagnostic procedures
(medical history, own observations, different results
from tests used, such as the score on the MMSE (Fol-
stein et al., 1975), Clock Drawing Test (Sunderland
et al., 1989), and other neuropsychological test re-
sults, etc.). Sometimes, there are results from assess-
ments of ADL and IADL, carried out by an occupa-
tional therapist. Reports by family members about
general cognitive decline and impaired visuospatial
ability can sometimes imply a decline in driving abil-
ity. A study by Wild and Cotrell (2003) reported that
individuals with Alzheimer’s disease are often unre-
liable in their ratings of their driving skill and that
their ratings are systematically higher than those of
a professional evaluator. Family members can feel a
certain anxiety about driving ability, but tend to un-
derreport specific problems occurring during driving.
Many studies express doubts concerning the reliabil-
ity of family members’ reports on driving ability.
In most cases, the memory assessment has re-
sulted not only in a diagnosis, but also a staging of
the severity of disease. According to a consensus doc-
ument (Lundberg et al., 1997), persons with a mod-
erate and severe dementia should not be driving. In
Sweden, consequently, medical regulations state that
the license of a moderately or severely demented per-
son should be revoked.
There are only three studies (Brown et al., 2005;
Ott et al., 2005; Fox et al., 1997) where a physician rat-
ed the patient’s fitness to drive in comparison to the
outcome of an on-road test (ORT). Two of the stud-
ies used the same material and one of the physicians
participated in both studies. One “very experienced
dementia specialist” had 78% correct classifications
(pass or fail ORT), as compared to the “lowest per-
forming” one, (a general practitioner) with only 62%
correct classifications (Ott et al., 2005). Between 25
and 35% of the patients who were clinically consid-
ered as unfit to drive nonetheless passed the ORT.
The conclusion in the third study (Fox et al., 1997) is
that neither the physician nor the psychologist can
predict the outcome of an ORT.
Summary
A clinical assessment alone, even when performed by
an experienced “dementia physician”, does not give
sufficiently reliable information on driving fitness in
subjects with mild or very mild dementia (due to low
specificity). Individuals with dementia of mild/very
mild degree or cognitive impairment should there-
fore be assessed by specialised staff with respect to
fitness to drive. Cases of moderate and severe de-
mentia (CDR 2–3 (Morris, 1993) or MMSE ≤18) can be
dealt with by any physician and should result in the
termination of driving. The possibility of falsely high
or false low scores on MMSE must be considered, es-
pecially in vascular disease or in cases with high or
low premorbid functioning.
The experience from previous studies indicates
that a clear cutoff score for different tests in mild/
mild dementia, with respect to continued driving,
will be difficult to establish, if this is ever the case.
95
Chapter 10: K. Johansson and C. Lundberg
2.2 Special tests developed for assessment of
fitness to drive
The SDSA (Stroke Driver Screening Assessment) with
its later developed Nordic version (NorSDSA) can be
used also to assess individuals with cognitive impair-
ment or dementing conditions. The battery test con-
sists of 4 subtests and yields a summary score, cal-
culated by using given formulas, and this summary
score indicates a positive or negative recommenda-
tion. The test should be used by occupational thera-
pists and psychologists and a formal education of us-
ers is recommended.
The UFOV (Useful Field of View) is a PC-based
test expressing the result as a levels of crash risk. It
takes about 15–20 minutes to administer. The pro-
gram is self-instructing (in English), but it is recom-
mended that the test leader be an especially trained
health professional (preferably an occupational ther-
apist or a psychologist). It should be noted that the
PC-based version used is not entirely comparable to
the original version (with a very large screen) used in
the USA and for the validation studies.
SDSA: Published studies exists for stroke, trau-
matic brain injuries and Parkinson’s disease. For
Alzheimer’s disease, there is one study showing a
certain ability to discriminate AD patients from con-
trols, but the relation to ORT was not tested. The sub-
tests of SDSA were included in a study by Lincoln et
al. (2006), where only the traffic sign recognition test
showed a tendency to discriminate between safe and
unsafe drivers.
UFOV: A meta-analysis from 2005 (Clay et al.,
2005) with 8 included studies (all with controls)
showed a strong consistency between the studies
(correlations between results on the UFOV and car
crashes, driving simulator results and results from
ORTs, respectively).
Only three of the studies included individuals
with Alzheimer’s disease (Duchek et al., 1998; Cush-
man, 1996; Rizzo et al., 1997) and matched controls.
One study used the results from a driving simulator
and two used the results from an ORT as outcome
measures. None of the latter studies has showed that
96
the method can predict pass or fail driving result at
an ORT in a group of mild or very mild dementia, de-
spite strong correlations between reduction in UFOV
and ORT scores. For quite a high proportion of the
patients participating in the study by Duchek and co-
workers, the UFOV proved too complex. Hence, the
missing data relating to those individuals do not nec-
essarily indicate that their useful field of view was re-
stricted. Rather, their inability to complete the UFOV
can be considered as a marker of general cognitive
impairment.
Summary
NorSDSA is used in the Nordic countries. The test
manuals indicates reference levels also for individu-
als with dementia. The summary score was able to
predict the result of an ORT with a specificity of 72%
and a sensitivity of 66%. There are, as yet, no pub-
lished studies with SDSA and AD patients.
UFOV in used in some centres in Sweden, but
evidence is missing for the discriminating ability
among patients in an early phase of dementia.
2.3 Neuropsychological tests used to assess
fitness to drive
For a long period of time, neuropsychological tests
have been used in attempts to find a relation between
crash risk, driving ability and test results, with the goal
to predict fitness to drive. For ethical reasons, it is not
possible to make a study where cognitively impaired
drivers are allowed to continue to drive in order to
analyze future crash involvement. The alternative left
is to relate the test results to ORT. In the literature,
frequently investigated domains of importance for
driving fitness (Reger et al., 2004) are attention and
concentration (that also include speed components),
executive functions, memory, and visuospatial skills.
In addition, it would appear to be important to deter-
mine whether features such as emotional instability
and increased fatigue are present.
The neuropsychological test gives the clinician
an important measure of impairments within dif-
 Assessment of fitness to drive, possession of professional drivers’ license…
ferent cognitive domains that are considered as im-
portant for traffic safety. There is, however, no docu-
mented knowledge about how the degree of severity
of the cognitive impairment affects driving ability, or
how decline in different domains interact. One partic-
ular example is how cognitive decline interacts with
a visual acuity at the lower limit for the possession of
a driver’s license. Frequently, the studies show a cor-
relation between test variables and points obtained
during a test drive. However, when the outcome from
a driving test is dichotomized as pass or fail, the part
of false negative test results is not acceptable.
One meta-analysis has been performed by Reger
et al. (2004) where 27 studies with neuropsychologi-
cal test results were analyzed. Because a very large
number of different test have been used, the meta-
analysis was carried out with cognitive domain at
one side and outcome in terms of ORT on the other
side. In studies with control groups, the neuropsycho-
logical test results can predict the ORT outcome. But
within a group of individuals with cognitive impair-
ments or mild dementia to identify those who has an
increased cash risk or decline in driving ability for
that, those tests are not so useful. Tests of visuospa-
tial ability are seen as the most valuable in predicting
crash risk, while visuospatial ability and attention
both have small to moderate effect in predicting ORT
results. Executive functions showed a low relation-
ship to ORT results, as did other neuropsychological
test results. Commonly used mental status measure-
ments such as the MMSE and the CDR do not give
sufficient information to serve as the sole basis on
which to make a decision concerning continued li-
cense holding (Diegelman et al., 2004), but they can
be used to select patients who should be referred to
evaluation (Freund et al., 2005).
After the publication of the meta-analysis, Grace
and co-workers (2005) presented a study showing
that the Trail Making test, parts A and B and the Rey
Osterreith Complex Figure are the most useful tests
to predict ORT results. However, sensitivity and spe-
cificity figures were not shown. A systematic review
by Molnar et al. (2006) concludes that “Without vali-
dated cutoff values it is impossible to use standard-
ized tests in clinical praxis”. The study identified “a
gap in research, hindering the developing of evidence
based guidelines”.
Summary
No neuropsychological test targets one single cogni-
tive domain or function. Neuropsychological tests are
mostly multifactorial, meaning that they tap more
than one cognitive domain. Furthermore, some do-
mains related to complex cognitive functions have
several aspects. For example, attention can be sub-
divided into sustained attention, divided attention,
and selective attention. This situation makes it even
more difficult to evaluate and develop cutoff values.
The conclusions from the single published meta-
analysis must be interpreted with caution when the
authors state that neuropsychological tests have only
a small ( for attention) to moderate ( for visuospatial
ability) relation to results from ORT when predict-
ing pass/fail in a group of individuals with dementia
symptoms of severity between CDR 0,5 and 1,0. On
the contrary, the tests are often useful in selecting pa-
tients with impaired driving ability who need a closer
evaluation.
2.4 Evaluation in a driving simulator
A driving simulator gives the opportunity to perform
assessments under standardised conditions. At the
same time, it is possible to add hazardous traffic situ-
ations that cannot be predicted in real traffic. A simu-
lator has, however, many drawbacks, combined with
a high investment cost. Taken together, this means
that simulator driving does not, at present, have the
potential to become a general assessment tool, al-
though the costs for a single drive is low. The type of
simulator as well as the design of scenarios increase
the likelihood that a cognitively impaired person will
have difficulty to adjust the test environment and
therefore obtain worse results than they would have
when tested on the road, in a familiar vehicle and in
familiar surroundings. In addition, problems of mo-
tion sickness, that appear to affect persons with cog-
97
Chapter 10: K. Johansson and C. Lundberg
nitive impairment to a higher degree than non-im-
paired test drivers, should not be overlooked.
In one study (Rizzo et al., 2001), evidence was
presented that demented drivers react differently
than controls in an emergency situation at a road
crossing. There is no study showing evidence of a
relationship between simulator results and on-road
results in a group of cognitively impaired/mildly de-
mented drivers.
The performed studies in a driving simulator
shows an effect on group level (Alzheimer’s disease
compared to healthy controls), but not on an indi-
vidual level, which is normally the clinical question.
There is, as yet no study of mildly demented drivers
(CDR 0,5 – 1) showing an agreement between simu-
lator results with cutoff scores on one hand, and
pass/fail at an ORT or future crash involvement on
the other hand.
Summary
There is at present no evidence in support of the use
of driving simulator in a clinical context.
2.5 On road test
If “on-road tests” are used as the “golden standard”
for fitness to drive, in spite of their limitations, an
on-road test will give the definite answer for the in-
dividual driver. But an acceptable result from ORT
does not necessarily mean that the driver is fit to
drive, because of the limitations inherent to the on-
road test.
An ORT can be performed in different ways de-
pending on the particular situation and local regula-
tions. It is possible to carry out the road test under
the supervision of an official driving examiner ( from
the National Road Administration, or a similar offi-
cial organisation). One problem in this case is that
the evaluator does not have the medical knowledge
to link specific medical/cognitive impairments to
specific aberrations of driving behaviour. It is also
possible to use an experienced driver instructor. This
can, however, sometimes be problematic, because
98
teaching a learner driver is not the same as correctly
evaluating driving performance (in an experienced
driver).
In some countries (i.e., Australia, Belgium, or
Canada), specifically trained occupational therapists
have the role of driving assessors. Since occupational
therapists have a specific expertise in the evaluation
of activities, this makes them highly suitable to per-
form driving assessments in a clinical context.
It has also been shown (Lundberg et al., 2003)
that the outcome of an on-road test depends on the
car used: whether it is familiar to the driver or not.
Furthermore, weather and traffic conditions can in-
fluence performance, as well as unfamiliarity with
the test situation. If ORTs are used as part of the med-
ical evaluation of fitness to drive, there is a need for
specifically trained/educated staff.
If an ORT is performed under the supervision
of an official driving examiner, a fail result will more
or less automatically result in a license revocation. If
the ORT is performed within a clinical context, the
results can be interpreted in a more sensitive way
and with taking into consideration other test results
or impairments.
Because the driver’s license normally will be re-
voked if the patient fails the ORT, it is impossible to
know whether continued driving would have led to
subsequent crash involvement or not.
Summary
An ORT of some type should be a recourse if the pre-
vious evaluation is inconclusive.
2.6 Conclusions
There is no existing strong evidence for the ability of
different tests and assessment methods to discrimi-
nate fit from unfit drivers in a group of persons with
very mild or mild dementia.
If there is a persisting uncertainty about fitness
to drive after an evaluation, an ORT is recommended,
but preferably after an assessment at an specialized
unit with experienced staff.
 Assessment of fitness to drive, possession of professional drivers’ license…
Not even tests recommended by the American
Medical Association or the Canadian Medical Associ-
ation guidelines (e.g., the MMSE, Clock drawing test,
Trails – B) can discriminate between currently safe or
unsafe drivers with very mild or mild dementia.
Pilot certificate
The cognitively impaired holder of a pilot certificate
must be discussed with the aviation authorities. High
demands on cognitive functioning do not only con-
cern pilots, but also aircraft technicians and flight
controllers.
Possession of firearms
The scientific literature is very limited, only four pa-
pers concerning the issue were found in a literature
search. No recommendations were given, except for
asking about the possession of firearms and limiting
access to them when patients are demented.
3 Provisional guidelines (until evidence
studies are published)
3.1 Driver’s license
The issue of license holding is a very sensitive and
the issue of individual mobility is often related to car
driving. In couples of the age groups that are con-
cerned, often only the male party is licensed. There-
fore, a revocation will have a heavy impact on mobil-
ity and social life etc. In consequence, the issue of
license holding must be discussed from the very start
of the memory assessment. This makes it possible to
progressively reduce driving in a controlled fashion
as the disease progresses, and alternative modes of
transportation can be found. Depression and crises
after a licence revocation are not unusual.
The possession (and type) of a driver’s license
should be documented in the patient’s file.
In case of moderate and severe dementia, the pa-
tient should stop driving and the license withdrawn.
Exceptions can be made if the patient is living in a
nursing home or is bedridden and it is impossible for
him or her to get access to a car.
If there are reports from family members about
impaired driving ability in combination with cogni-
tive impairments, this is a strong indication that an
assessment of fitness to drive should be performed.
Positive ratings from relatives are often not reliable.
Reports of car crashes or “narrow escapes” are, of
course, to be taken very seriously.
When diagnosing cognitive impairment or mild
dementia, it is important that an assessment of fit-
ness to drive should be considered. This assessment
should be performed by a person/team with special
knowledge about cognitive impairments and their
relation to traffic safety. Domains such as attention,
judgement and memory, visuospatial and psychomo-
tor functions are considered as particularly impor-
tant. The patient’s insight concerning his or her own
impairments is important and necessary in order to
be able to compensate for them. If results of the as-
sessment are to be used as a basis for a license revo-
cation, it is important that the investigation methods
and cutoff levels are validated for the situation in the
country where they are used.
When the clinical assessment does not yield a
conclusive result, an ORT is recommended under the
supervision of a competent evaluator (driving evalu-
ator or occupational therapist).
If the evaluation result indicates that the patient
is fit to continue driving, patients with a dementing
disease should be reassessed once a year or more fre-
quently, depending on the rate of cognitive decline
and aetiological diagnosis.
For professional drivers, one must take into con-
sideration the increased exposure to crashes, as com-
pared to an older driver, whose driving may be limited
to one or two weekly trips to the supermarket.
3.2 Railroad traffic
Regulations differ between countries, but cognitive
demands on train or tram drivers are generally higher
than for private car drivers.
99
Chapter 10: K. Johansson and C. Lundberg
3.3 Pilot certificate and aviation-related
activities
Here, regulations exist on a European and global lev-
el. Generally, no cognitive impairments are allowed
for aviators or other personnel involved in air traffic
safety.
3.4 Firearms
The permission (license) to possess firearm(s) are, as
a rule, related to a purpose, either target shooting or
hunting. If a person is licensed to use the firearm for
hunting, he or she is also allowed to shoot on targets,
but the opposite is not true. Shooting on targets be-
comes an overlearned skill after long training and is
normally performed under controlled circumstances.
It is therefore possible for an individual with mild de-
mentia to keep this hobby for some time, although he
or she is not allowed to hold a driver’s license. Hunt-
ing requires a good perception and fast reactions.
The hunter must clearly understand what he or she is
aiming at, in order to avoid shooting a fellow hunter
or the neighbour’s horse. Restricting hunting is there-
fore more important than restrict target shooting at a
shooting range. Duty weapons for some professional
categories (military, police, customs etc) must not be
forgotten.
If there is a risk of suicide (e.g., when a person re-
ceives the diagnosis of Alzheimer’s disease), firearms
must be taken care of.
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Chapter 11
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: AUSTRIA
Johannes Wancata and Josef Marksteiner
1 Introduction
Human dignity is a basic right which is guaranteed by
the Austrian law to each citizen including all persons
with cognitive disabilities. This means that all citi-
zens, even those with dementia and other cognitive
impairments, have the right for self-determination
and personal autonomy. The idea of human dignity
includes the right that somebody whose ability to
practise self-determination and personal autonomy
should be supported by a legal representative in or-
der to keep the chance to use his or her rights.
2 Law on guardianship for disabled people
Guardianship is covered in the Civil Code (das Allge-
meine Bürgerliche Gesetzbuch) and arranged by way
of court settlements. It has been in force since 1984
and applies to all people whose main place of resi-
dence is in Austria. A guardian is defined as a person
appointed by the courts to represent a mentally disa-
bled or mentally ill person in the legal affairs specified
in the court appointment order. The guardianship
measure removes the “legal competence” of the person
concerned in areas covered by the court appointment
order. European legislation varies in terms of who can
ask for the appointment of a guardian. The disabled
person may not undertake any legal acts within the
scope of the guardian’s responsibilities, without ex-
press or tacit agreement from the guardian.
Exception: Legal acts in minor day to day mat-
ters may be undertaken by the person concerned
on their own account. In the last 10 years in Austria,
there has been a dramatic increase in guardianship,
with approximately 0.5% of the population currently
under guardianship. For persons suffering from de-
mentia the same laws are applied as for all other per-
sons who have a (partially) impaired ability to make
their own decisions (e.g., persons with other severe
psychiatric disorders or mental retardation). Usu-
ally an independent evaluator is asked for an official
evaluation if somebody is impaired with regards to
the ability to make competent decisions. The final
decision as to whether someone needs a legal repre-
sentative is made by the court. Further, based on the
independent evaluator’s assessment, the court must
specify the tasks for which somebody needs a legal
representative (e.g., financial affairs, decision about
medical treatment). The legal representative may be
a relative of the patient, a lawyer or a social worker.
3 Legal assistance and representation
Despite this legal framework only a minority of de-
mentia sufferers have a legal representative. One of
the main reasons for this discrepancy is that both pa-
tients themselves as well as their family caregivers try
to avoid a legal representative. Many patients do not
want do have a legal representative because this im-
plies (in their opinion) “to be nuts”. Since dementia
is stigmatised as many other psychiatric disorders,
patients try to avoid that anybody else is recogniz-
ing their mental disorder. Family caregivers often try
to avoid stigmatisation of their loved family member
and, therefore, consider the patients view. In addi-
tion, some families fear that the whole family could
be stigmatised because of the patient’s mental illness.
If a patient with dementia becomes incompetent,
Chapter 11: J. Wancata and J. Marksteiner
family caregivers often try to find their own methods
to solve everyday problems.
In nursing homes, the nursing staff often makes
decisions instead the patients even if the patient
has no legal representative. The main reason for this
practice is the legal procedure is very laborious and
time-consuming, but of course this practice is in
conflict with the legal situation. In addition, it must
be considered that the usual legal procedure to ap-
point a legal representative needs a comprehensive
assessment and a lot of work done by the courts. If all
demented patients who are not able to make compe-
tent decisions should receive a legal representative,
the number of courts in Austria might be to low to
manage all this work.
The methods applied for the assessment of com-
petence depend on the experts performing this as-
sessment. The judges often ask psychiatrists or neu-
rologists to make their assessment of competence,
but sometimes other medical doctors (e.g. primary
care physicians) are asked. Insurances and social
services needing an assessment of competence for
deciding if somebody qualifies for financial support
often ask primary care physicians or specialists in
internal medicine to perform this assessment. Fre-
quently, these medical specialists are not sufficiently
experienced concerning diagnosis or assessment of
dementia. Often, this results in judgments or recom-
mendations which very surprising for experts in psy-
chiatry and neurology.
4 Advance directives
Since June 2006 a new Austrian law governs advance
directives concerning medical treatment. Now, per-
sons can fix in advance which kind of treatment they
do not want to receive (in the case of impaired com-
petence). For making a legally binding directive, a
comprehensive education by a medical doctor and a
consultation by a lawyer are required. If the advance
directive fulfils all requirements the medical staff
must accept the patient’s decision. An advance di-
rective is effective for a maximum of five years. The
104
main difficulty with advance directives seems to be
that with the available training programmes very few
service users can be enthused to draft. Until now, it
is unclear what happens if a person suffers from de-
mentia for a period longer than five years.
This new law emphasizes that everybody may
change his or her decision at every moment. It is not
clear if a demented person is allowed to change an
advance directive, even when he or she is partially
competent. (For example, aphasia and apraxia which
are common among dementia sufferers might pre-
vent that a dementia patient changes his advance
directive.)
5 Testamentary capacity
In Austria, testamentary capacity is not automati-
cally withdrawn once a guardianship measure is pro-
nounced. The decision upon a person’s testamentary
capacity is a decision to be made by a court of law.
6 Consent to diagnosis and treatment
Austria recognizes the requirement of informed con-
sent, through official statements of national medical
associations or in codes of medical ethics. Having a
dementing illness is not an indication of impaired
decision-making capacity per se. Especially in the
earliest stages of dementia, patients with dementia
remain capable of making a wide variety of deci-
sions. However, the patients’ cognitive capacity has
to be closely monitored at baseline, and at follow-up
assessments. In the case of emergency treatment, it
is the doctor’s duty to take the necessary course of
action. Wishes expressed in an advance directive
should be taken into account. In the case of routine
medical care or treatment, the doctor must obtain in-
formed consent. If a patient suffering from dementia
is not able to provide informed consent, the legal rep-
resentative has to decide on his behalf based on the
will, actual or presumed, of the patient. For patients
in an advanced stage of the disease or at the end of

life due to another disorder or illness, the wishes with
regard to the relentless pursuit of treatment should
be respected.
7 Giving consent for research
The new European legislation on good clinical prac-
tice in the conduct of clinical trials on drugs has been
implemented in 2004. The new legislation does not
differentiate between patients who are incompetent
because of a psychiatric illness or dementia and pa-
tients who are incapacitated owing to an emergency
situation. All those patients may be enrolled in a clin-
ical trial only after informed consent has been grant-
ed by a legal representative. Thus, in clinical trials for
persons suffering from dementia the same laws are
applied as for all other persons who have a (partially)
impaired ability to make their own decisions.
There is a big concern, that patients suffering
from dementia may not be included in clinical trials,
and future therapies will not be scientifically evalu-
ated anymore.
As in all other European countries, the law re-
quires that everybody participating in clinical re-
search gives his written consent after having com-
prehensively been informed about the purposes, the
advantages and risks of this research. Patients suf-
fering from dementia at an early stage may be able
to understand the diagnosis and take an active role
in decisions affecting their lives. For that reason, pa-
tients with dementia can also consent in take part in
research, especially in clinical trials.
The form which has to be signed by the patient
has to be approved by Ethics Committees. The work
of the Ethics Committees is based on the “Ethical
Principles for Medical Research Involving Human
Subjects” as given in the Declaration of Helsinki of the
World Medical Association. Of course, Ethics Com-
mittees require an informed consent signed by the
patient or a legal representative for research among
dementia sufferers.
Considering that many dementia patients who
are not able to make a competent decision do not have
Practice of competence assessment in dementia: Austria
a legal representative brings a variety of problems for
research among dementia patients. For example, an
informed consent signed by the patient or a legal rep-
resentative is required (by some Ethics Committees)
even for research among dementia caregivers. Thus,
studies investigating caregiver’s burden and perform-
ing a simple assessment of the patient by means of
the MMSE are allowed only among dementia patients
who are able to make a competent decision or who
have a legal representative. This leads to a sampling
bias. Of course, in research on human subjects, con-
siderations related to the well-being of the patient
should take precedence over the interests of science
and society. But, the collection of representative data
necessary for planning appropriate services for de-
mented persons is prevented by this rigorous protec-
tion of the individual patient.
The number of dementia sufferers in Austria
will increase within the next five decades from about
90.000 to more than 230.000 patients. These rising
numbers are similar in many other European coun-
tries. Considering this marked increase, the develop-
ment of rules are urgently needed which sufficiently
protect the patient and allow the investigation of es-
sential research questions.
8 Driving licence
There is no obligatory health check for the elderly
subjects with memory impairment to keep their reg-
ular driving licences. As dementia progresses, cog-
nitive impairment may seriously effect on memory,
visuo-spatial abilities and perception. Due to the doc-
tor-patient confidentiality, general practitioners as
well as specialists are not obliged to disclose diagno-
sis showing conditions interfering with driving to the
authorities unless there is sufficient reason that the
patient will actually endanger other persons. When-
ever patients suffering from dementia refuse to stop
driving even though they have been assessed as be-
ing unsafe, there are no straightforward solutions;
the best action to take will depend on the individual
involved.
105
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Chapter 12
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: DENMARK
Dorthe Vennemose Buss and Gunhild Waldemar
1 Financial capacity
People over 18 years are allowed to make their own
financial transactions unless they are under financial
receivership. Receivership is appointed by the court
or made by an administrative decision to people with
lack of mental capacity due to a health problem (i.e.,
brain diseases, brain injury, and development disor-
ders). Before appointment of receivership the disease
and the lack of capacity must be described in a medi-
cal certificate.
Financial contracts made by people under fi-
nancial receivership are invalid, only the receiver is
allowed to make financial dispositions. The court can
find financial contracts made by a person with lack
of mental capacity, who is not under receivership,
invalid.
People with financial capacity are allowed to
make a general power of attorney with decisions of
whom they want to take care of their finances in the
future and how they have to do it. A general power of
attorney can be a notary’s document or attested by
two witnesses.
2 Testamentary capacity
A valid will has to be attested by notaries publicus
(normally a judge). Notaries publicus needs to make
certain that the person has testamentary capacity. In
case of incapacity the will is refused. It is the judge,
who ultimately makes the assessments about capac-
ity or incapacity; there is no medical report involved.
The court can find a will, made by a person with
mental incapacity, invalid.
3 Advance directives – medical treatment
People over 18, who are not under personal guardian-
ship, can make a living will. A living will has to be reg-
istered in a special register for living wills. The person
can refuse life-prolonging treatment, should he/she
come in a terminal phase of a disease (unavoidably
dying). This statement is binding for the doctors.
The person can also refuse life-prolonging treatment,
should he/she become incapable because of mental
illness, old age, accidents or heart failure. This state-
ment will only be advisory for the doctors.
4 Advance directives – daily care
People can make a will with their wishes to the daily
care. The community has to take the wishes serious,
if it is possible, when they plan the daily care for a
person, who is incapable to corporate. There are no
formal requirements to a daily care will and no reg-
istration.
5 Consent to medical treatment
For people with incapacity in healthcare decisions
the nearest relative or a guardian can give informed
consent to treatment or refuse treatment. The doc-
tor makes the assessment about capacity. The patient
must be informed and involved in the information to
the extent that he can understand and that this would
not cause injury. This involves taking into account
the person’s views if they are current and relevant.
Chapter 12: D.V. Buss and G. Waldemar
6 Consent to bio-medical research
Bio-medical research has to be approved by a scien-
tific and ethical committee. For persons under per-
sonal guardianship the guardian can give informed
consent to participation. For persons with incapac-
ity in healthcare decisions without guardianship,
the nearest relative and the general practitioner can
give consent to participation. The person himself
must be informed and involved in the information
to the extent that he can understand and it is not
allowed to force him to participate. Participation in
the bio-medical research has to be in the person’s
interest.
7 Driving capacity
Before getting a driving licence and renewal of the li-
cence the person has to get a medical examination
and a medical certificate at his general practitioner.
For drivers over 70 years of age the general practition-
er has to also be aware of the person’s mental health
in his examination.
108
When a patient is diagnosed with dementia the
doctor must be aware of the question regarding driving
and should possibly recommend that the patient stop
driving.
If the patient does not wish to stop driving and
the doctor, the family or the police find him unable to
drive, then the doctor or the police can refer him to a
consultative driving test.
8 Personal guardianship
In combination with a financial receivership a person
with mental incapacity can have a personal guardi-
anship as well. Guardianship is appointed by the
court or made by an administrative decision. Before
appointment of a guardianship the disease and the
lack of capacity are described in a medical certificate.
The person is still legally competent and allowed to
make decisions about his personal affairs as long as
he can. The guardian will be there to help him and to
take over when necessary. The guardian cannot make
decisions against the persons will.
Using force in the personal area of persons with
mental incapacity is only allowed if law regulates it.
Chapter 13
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: FINLAND
Raimo Sulkava
1 Introduction
Legal competence is not similar in different types
of dementia. In Finland most patients with memory
problems are properly diagnosed using techniques
including brain imaging, mainly with magnetic res-
onance imaging (MRI). Thus we know what kind of
process is going on in the brain and what are the
patient’s probable clinical and neuropsychological
features as well as what the prognosis of the disease
is. Mini Mental State Examination (MMSE) is used in
all patients, the Consortium to Establish a Registry
for Alzheimer’s Disease (CERAD) neuropsychological
battery sometimes and a broad neuropsychological
battery only in problematic patients.
A dissertation in Finnish with an English sum-
mary (Legal status of a person with dementia) was
published as a book in the year 2003 (Mäki-Petäjä-
Leinonen, 2003). According to the study the legal
system of Finland is transforming towards acknow-
ledging greater value of fulfillment of the right to self-
determination as previously. A person with dementia
is capable of deciding his/her matters whether the
matters regard his/her person or property. Only after
it has been proven that this is not the case does the
principle of protection becomes determining.
2 Testamentary and financial capacity
In Finland a dementia disorder does not necessari-
ly abolish your testamentary and financial rights.
However, the demented patient must understand
the meaning and consequences of financial and legal
matters. Usually the demented patient can draw up
his/her will when the degree of dementia is mild cor-
responding the MMSE score 18–20 or over in Alzhei-
mer’s disease. In these cases it is very important that
there are two impartial witnesses to the will who have
known the person for a long time. There is a decision
of the Finnish Supreme Court where the last will of a
demented person with moderate dementia was not
accepted because he was doomed to be incompetent
to express his independent stable will.
In Finland a guardianship can be sought from the
local register office for one special financial transac-
tion, either for a certain time period or permanently.
The legal guardian helps the demented person and pro-
tects him/her from financial abuse. However, although
the legal guardian is appointed the demented person
is not legally incompetent unless the court has in such
way decided which is quite rare. In most patients with
dementia seeking a legal guardian is not necessary, if
the patient’s financial interests are not endangered.
If the content of the will is very clear and simple
and the person’s intent is longstanding and stable,
the will can be drawn up even at the moderate stage
of dementia. In all cases of bigger financial transac-
tions a temporary legal guardian is recommended to
prevent the possible court trials.
The deal can be cancelled in court if the person
is incapable of understanding its meaning and conse-
quences. In some cases a patient with severe demen-
tia has contracted a marriage. These are cases where
the demented person has lived with his/her future
spouse for a long time. In Finland certain financial
and legal matters proceed more smoothly if the car-
egiver is married with the patient.
The biggest problems are seen in moderate cases
of dementia. In the trial courts the decisions can be
Chapter 13: R. Sulkava
different even in identical cases. In most cases of mild
dementia the patients are truly legally competent, but
some patients with mild Alzheimer’s disease are eas-
ily persuaded to handle financial affairs or wills that
are not according to their true will and it is not easy
to repeal these in court.
3 Advance directive
Advance directives (living wills) are widely recom-
mended for all people in Finland. The content of
the living will is usually the prohibition of unneces-
sary prolongation of life, e.g., by artificial ventilation
or treatment in intensive care unit, when there is no
hope for improvement. However, only a small frac-
tion of people have written their advance directives.
In case of demented patients, the advance directives
are very seldom useful because they almost never
have access to intensive care. However, when an ad-
vance directive is available it is a legally competent
document and its orders should be respected.
Nowadays there are also so-called positive liv-
ing wills. These are written documents how a per-
son should be cared when he/she is incompetent to
express his/her opinion. This is usually the case in
advanced dementia. These documents can express
many items, e.g., how intensively you should investi-
gated when new symptoms appear, what kind of food
and drinks you like, what is your favourite clothing,
what kind of music you like to hear etc. If the person-
nel in institution pays attention to these things, the
quality of ones lasts years can be much better even
for patients suffering from dementia.
4 Consent to treatment and research
The demented person’s autonomy to decide on his/
her treatment and care should be respected as long
as possible. At an early stage of the disease, when the
patient understands the pros and cons of the treat-
ments, the permission is obtained only from the pa-
tient. Later and in case of any uncertainty both the
110
patient and the closest relative or the legal guardian
are informed and the permission is obtained from
them. If the patient cannot express his/her will any
more or is incompetent to understand the offered
treatment option, the physician hears the relatives’
opinion. Then the physician makes the decision in
the best interest of the patient. However, if the de-
mented person’s opinion when he/she was healthy is
known this should be respected.
The need for residential care may compromise
the demented person’s autonomy. The decision to
take the demented patient to residential care is quite
often done against his/her will. Sometimes the de-
mented patient does not understand the risks of liv-
ing alone. Furthermore, if living with a caregiver, the
patient does not always understands the burden that
he/she is causing. Usually the physician and the clos-
est relative/legal guardian make the decision by com-
mon consent. The patient’s opinion is heard, but it is
not always respected.
If a demented patient is involved in research, a
written, informed consent is obtained both from the
patient and the closest relative or legal guardian. All
research conducted on demented patients in Finland
must be approved by the Ethics committee.
5 Driving capacity
Alzheimer’s disease and other dementing disorders
almost always lead to loss of safe driving. According
to Finnish laws and regulations, however, there are
some conditions when a person can keep his/her pri-
vate driving license despite the diagnosis of a memo-
ry disorder. First, dementia must be mild (MMSE usu-
ally more than 20). Second, there is information from
the relatives and friends that driving is safe and there
are no traffic offences because of dementia. Third,
clinical examination by a physician (usually neurolo-
gist or geriatrician) is passed successfully. The ex-
amination includes the clock drawing test to reveal
possible agnosia. A driving test on road or in traffic
laboratory is carried out in suspected cases. In cases
of mild dementia, the driving license is granted only

for one year or even a shorter time. The professional
driving license is always taken away if there is a cog-
nitive disorder. If there are a clear impairment in ex-
ecutive functions, e.g. in frontotemporal dementias,
or a marked slowing of movements and thinking, the
driving license is take away even in mild cases. Lack
of insight is also a reason to deny driving.
Even if the driving license is granted to the pa-
tient he/she is asked to report any deterioration in
symptoms and is advised no to drive alone, during
night or in bad conditions.
Since the year 2004 it is mandatory according
to the law for physicians to report to police those pa-
Practice of competence assessment in dementia: Finland
tients who have health conditions which make driv-
ing unsafe. Most physicians do not like the law but the
police have received several hundreds of reports and
the driving license is taken away from the reported
persons. The majority of cases have had a dementing
disorder.
Reference
Mäki-Petäjä-Leinonen A (2003) Dementoivan henkilön
oikeudellinen asema (Legal status of a person with demen-
tia). Dissertation, University of Helsinki
111
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Chapter 14
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: FRANCE
Marie Bouyssy, Emilie Legay, and Vincent Camus
1 Introduction
According to the French consensus statement on
dementia of Alzheimer’s type at the severe stage,
“whatever the stage in the course of the disease, the
patient is a unique individual who deserves respect
and attention, and therefore quality of care and ac-
cess to care without discrimination because of age or
dependence”. It adds that the main goal of care and
management is to improve the quality of life of the
patient and his or her family, by associating a project
for life and a care plan, up to the end of life, with re-
spect to patients rights and wills. In that perspective,
assessment of competence and mental capacity to
consent is part of the comprehensive medical evalu-
ation. It takes various aspects with regard to both the
decisions and situations it addresses, and the French
legal and regulatory environment.
2 Testamentary capacity
According to the French civil law, a lack of any insan-
ity is required to establish a testament. Civil acts are
null in case of mental disease, but the notary is not
expected to evaluate the mental state of his client.
The burden of proof of the insanity belongs to those
who act in annulling the testament. And the proof
can be established by any means; even the notary has
previously considered the client as “clear minded”
(article 901 du code civil).
3 Informed consent
3.1 Hospitalisation and institutionalisation
According to the French deontological code, the pa-
tient’s will has to be always followed, and as much as
possible, his consent is systematically researched.
The chart of hospitalisation (March 2, 2006) given
to each newly admitted inpatient, states that every-
one has free choice of the health care professional
or of the health care setting, except for patients ad-
mitted in psychiatric settings without any consent.
These psychiatric admissions are of two types: the
“hospitalisation à la demande d’un tiers”, and the
“hospitalisation d’office”. In the case of “hospitalisa-
tion à la demande d’un tiers”, admission is done on
the basis of an informant’s request and of two medi-
cal certificates. In the “hospitalisation d’office”, the
hospitalisation is done of the basis of a medical cer-
tificate and a decision of the civil authority (mayor
of the city or prefect) due to potential threat of dan-
gerous behaviour. In both cases, medical certificates
must describe as precisely as possible the symptoms
of the mental disorder and their impact on the people
ability to make their own decisions. These admission
procedures are strictly limited to admission in psy-
chiatric wards, but are applicable neither for general
hospital admission, nor for nursing home admission.
The informed consent is requested for admission in
nursing home. A lack of any clear objection to stay in
a hospital or nursing home can often be considered as
a consent or an assent (understood as an agreement
to participate based on an incomplete understand-
ing), even this concept of assent has no legal basis.
Chapter 14: M. Bouyssy, E. Legay, and V. Camus
3.2 Diagnosis and treatment
Announcement of dementia diagnosis requires that a
comprehensive assessment has been done, including
a full neuropsychological testing and a neuro-imag-
ing assessment. The bio-ethical law (article 16-3 de
la loi de Bioéthique du 29.09.1994) emphasises the
necessity to obtain an informed consent before any
therapeutic or exploratory act. The law on “patients
rights” (04.03.2002) states (article 1111-4) that this
obtaining of a free informed consent is mandatory
prior to any medical intervention, and that this con-
sent can be withdrawn at any time. In case of lack of
consent, the care provider has to respect the patient’s
will, but has to use all appropriate means in order to
convince the patient to accept the needed cares.
3.3 Participation in research
The “Loi Huriet” on biomedical research (20.12.1988)
makes mandatory to obtain of a free informed con-
sent prior to the inclusion in a research protocol. This
consent has to be written and can be withdrawn at
any time. For adult persons under legal guardianship,
the participation to research is possible by obtaining
the free informed consent from the guardian. But the
acceptation by the patient will always be researched,
and the participation will made impossible in case of
clear rejection by the patient. In demented patients
without any guardianship, consent from first degree
relatives is always researched.
3.4 How is informed consent managed in
people with dementia?
The deontological code (code de déontologie) states
that in some circumstances, in particular in case of
severe illness, the patient can be maintained in the
ignorance of his state in order to protected him. In
that case, informants have to be informed. Neverthe-
less, the law on “patients rights” (4 mars 2002) states
that the care provider has to give to each patient,
114
information about his medical state, the therapeu-
tic possibilities, and their potential consequences.
This law introduced the reference to a “confident
referral” (personne de confiance). Patients are invit-
ed, at their admission to the hospital, to designate
a person who will assist or represent them during
the hospitalisation, in case of their incapacity to ex-
press their will. The patient can designate parents,
caregivers or any person of his choice, whose advice
will be asked in case of incapacity. This advice will
have to be taken into consideration, in any decision
making process.
3.5 How is it decided, whether a formal
attorney (guardianship) is necessary?
In France, the age of consent is 18. From that age, eve-
ryone has full legal capacity. The law protects the one
who is unable to manage his own affairs by himself
because of a blunting of his personal faculties. The
law on “protection of incapable people” (3 janvier
1968) aims to protect people whose mental illness
or incapacity limits their ability to manage their per-
sonal affairs. It offers three different levels of guardi-
anship. In the first, civil acts can be considered to be
null and void retrospectively if completed during a
period of mental incapacity (sauvegarde de justice).
In the second case, a designated guardian assists the
citizen who keeps all his civil rights (curatelle). The
third transfers to the guardian all legal issues, the citi-
zen loosing all his civil rights (tutelle). Every physician
has duty to assess any potential alteration in mental
capacity due to a medical condition, and to take any
appropriate decision in order to get protection to the
patient. He has to take into account, as much as pos-
sible, the patient’s advice. The physician, the patient’s
family, or the patient can do himself the request of
protection to the court. The court, on the basis of a
psychiatric expertise, judges the final decision on the
modalities of the guardianship.

3.6 Does the procedure differ with regard to
informed consent for
– Institutionalisation
If the patient agrees, the guardian has only to
be informed. In case the patient doesn’t agree,
the legal consent of the guardian has to be ob-
tained.
– Diagnosis and treatment
The patient and the guardian have to obtain a
clear statement on the medical condition and
the needed medical acts. The law on “patient’s
rights” (loi du 4 mars 2002) states that the con-
sent of the patients under guardianship has to be
systematically researched, a long as the patient
is able to take part in decision-making and to
express his willing. In case of lack of guardian’s
consent, the physician can deliver appropriate
cares if he knows that this lack of cares will have
severe consequences for the health condition of
the protected adult.
– Participation in research
The consent has to be obtained by both the
patient if he is able to give a consent, and the
guardian.
3.7 Is it possible to arrange formal
guardianship only for certain areas of
competence (e.g., finances, treatment…)?
The law of January 1968 on “protection of incapable
people” distinguishes 3 types of guardianship:
– La sauvegarde de justice: this temporary device
applies to protect people whose mental capaci-
ties have been altered for a short period or for
waiting a final decision regarding the two other
types of guardianship regime. Acts done during
the period of mental incapacity can be consid-
ered as null, but people get full exercise of their
civil rights.
– La curatelle: In this case, an agreement of the
guardian is requested for some acts regarding
Practice of competence assessment in dementia: France
property and financial affairs, but people retain
their own civil rights. The court can designate
any family member has guardian.
– La tutelle: According to this type of guardianship,
the guardian represents the protected people in
all civil acts. The patient is fully deprived of all
civil rights. The guardian can be any member
of the family. This is the most frequent type of
guardianship used to protect demented people.
3.8 Can a spouse or child decide for the
patient without a formal assignation as
guardian concerning the following areas?
The French Civil Code defines (article 219) that when
one patient in unable to express his consent, the
spouse can ask to the court the authorisation of rep-
resenting the patient. In that case, the spouse repre-
sents the patient for consent of hospitalisation, treat-
ment, and participation to research protocol. Spouse
or children can also be designated as “confident re-
ferral” in the sense of the law of “patients rights” (loi
du 4 mars 2002) during an hospitilization.
4 Driving licence
A new governmental project on driving security is
actually under discussion in France. It aims to im-
prove the early detection of medical contraindica-
tions to driving capacity. Driving capacity should as-
sess visual acuity, alertness, and gait performances.
Driving capacity assessment should take place along
the life span, prior to the initial delivery of the driv-
ing license, and during each systematic and standard
preventive medical evaluation (as made in working
medical evaluation…). From the age of 75, a system-
atic evaluation should be done every two years, in or-
der to detect at risk patients, inform them, and try to
obtain their consent to revoke their driving license.
At this time, practical modalities of this systematic
evaluation are not clearly defined.
115
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Chapter 14: M. Bouyssy, E. Legay, and V. Camus
5 Conclusions
The French legal framework offers several devices
that help to ensure respect of rights and wills of pa-
tients suffering from dementia. Care providers rou-
116
tinely use them but specific tools that could help to
conduct reliable clinical assessment of competence
and mental capacity are still lacking. Developing
such tools is a current way of research in the field of
psychosocial dimensions of dementia care.
Chapter 15
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: GERMANY
Volker Lipp
1 General outline
1.1 Introduction
Persons suffering from dementia, like other persons
with intellectual disabilities, due to their human dig-
nity as guaranteed within the German Constitution,
are recognised as a person with the capability to
hold rights and obligations (“Rechtsfähigkeit”) from
birth until death. The concept of human dignity also
includes the right to self-determination or personal
autonomy. Consequently, any restriction of one’s legal
capacity (the competence to exercise rights and to
assume duties, “Handlungsfähigkeit”) has to be com-
pensated by legal representation because this person
would otherwise be deprived of the chance to use his
rights. This is accepted only for purely personal deci-
sions (e.g., to enter into a marriage) which cannot be
made by a representative on behalf of the person. For
a detailed discussion see Lipp (2000).
1.2 “Natural” incapacity
In Germany, the age of majority is 18. At this age, eve-
rybody gains full legal capacity. However, an adult,
due to his mental illness or disability, may not be able
to understand the meaning and consequences of a
transaction or to decide for himself. Decisions made
by this person are then regarded as legally invalid
( for financial transactions see §§ 104, 105 BGB, i.e.,
the German Civil Code). This so called “natural” legal
incapacity (as opposed to a declaration of incapac-
ity by a court which no longer exists under German
law) works as single-case orientated exception to
the general rule that an adult has full legal capacity.
The party invoking this exception in court has the
burden of proof. The court then hears a medical ex-
pert, usually a psychiatrist. The court deals with the
question of incapacity only as a possible cause for
the invalidity of the specific decision or transaction
at issue. It does not decide on the incapacity of the
person as such.
Anybody dealing with an adult, citizens as well
as physicians or public officials, can rely on this. On
the other hand, German law does not protect the
good faith in the capacity of the person one is deal-
ing with. In certain cases, where a public official is
involved, it obliges the official to check the capacity
of the parties (e.g., the notary when authenticating a
legal transaction or act, “notarielle Beurkundung”).
This does not mean, however, that the official has
to assess the competence positively. It rather means
that the official has to look out for indications of in-
capacity.
Whereas these principles apply to all forms of
the so called “natural” legal incapacity, there are dif-
ferent sets of rules for different forms of capacities,
namely for the transactional capacity on one side
(“Geschäftsfähigkeit”), and for capacity to become
liable for a delict on the other (“Deliktsfähigkeit”).
Moreover, additional rules can be found, or are dis-
cussed, for special transactional capacities like tes-
tamentary capacity, capacity to marry or capacity to
consent to medical treatment. For the most recent
in-depth analysis see Lipp (2000).
Chapter 15: V. Lipp
1.3 Legal assistance and representation
1.3.1 Legal Guardianship (“Betreuung”)
Whereas the rules on “natural” legal incapacity can
be understood as minimum legal protection of men-
tally ill or handicapped adults, they do not provide
means for taking care of their affairs. Until 1991, the
German system followed the traditional approach of
legal incapacitation by court decree and the appoint-
ment of a legal guardian. The Guardianship Law of
1992 (“Betreuungsgesetz”) changed that completely.
“Betreuung” is a new form of guardianship without
the precondition of an incapacitation of the adult,
tailored to the needs of the person for legal support
and representation. The court has to determine in
every single case the affairs for which the legal guard-
ian (“Betreuer”) should be competent. The assess-
ment of the area of incompetence by the court must
be based on a diagnosis of mental illness or disability
by a medical expert, but also on an evaluation if, and
where, support and representation by a legal guard-
ian is necessary (§ 1896 BGB). The diagnosis of de-
mentia alone, even if it severely impairs the capability
to decide, will therefore not lead to the appointment
of a legal guardian if the affairs of the adult can be
taken care of by other means, e.g., by social services
or family members. For a detailed discussion, see
Schwab (2004).
Legal capacity of the supported person can only
be restricted by an additional court order so that he
will need the guardian’s consent for financial trans-
actions described in the order, if there is substantial
danger for him arising from those transactions (§
1903 BGB: “Einwilligungsvorbehalt”). Legal capacity
in other fields, like consent to treatment, cannot be
restricted. An overview is given by Lipp (2003).
1.3.2 Enduring Power of Attorney
(“Vorsorgevollmacht”)
The power of attorney covering, inter alia, the case of
incapability is an acknowledged alternative to legal
118
guardianship and strongly promoted in order to avoid
(costly) court proceedings. It can be issued as long as
the principal is not legally incapable to do so, and
maybe phrased generally, except in personal matters
like medical treatment or institutionalisation where
it must explicitly state the powers of the agent. The
document may be entered in a public register which
can only be inspected by the guardianship courts.
In principle, there is no court supervision of the
conduct of the agent except medical treatment with
serious risks for health or life of the patient or insti-
tutionalisation where the agent must obtain permis-
sion of the court like a guardian (§§ 1904, 1906 BGB).
However, if there are indications for a misuse of the
power of attorney, the court will appoint a guardian
to control the agent (§ 1896 sec. 3 BGB).
At the moment, the law is quite uncertain to
whom an enduring power of attorney can be given
apart from family members and attorneys (see Ah-
rens, 2005). As the law on legal consulting (“Rechts-
beratungsgesetz”) is about to be reformed, this may
change soon. In any case, the main question for the
principal remains to find somebody whom he can
trust to act according to his will even if there is little
control, or none.
2 Selected areas
Whereas the capacity to act in financial transactions
is governed by the rules on general transactional ca-
pacity (“Geschäftsfähigkeit”) as described in the first
section, there are some areas where additional or
even different rules apply.
2.1 Testamentary capacity
The substantive rules on testamentary capacity of an
adult (§ 2229 sec. 4 BGB) do not differ from the gen-
eral rules. Since a will can be made by any adult in
writing, there is no obligatory assessment of mental
competence. If the will, however, is made with the
help of a notary (§§ 10, 11, 28 Beurkundungsgesetz),
This page intentionally blank
 Practice of competence assessment in dementia: Germany
or other persons (emergency will, see §§ 2249 – 2251
BGB), these persons are obliged to assess the testa-
mentary capacity. As has been said above, this means
that they have to check for indications of incapacity.
They do not decide whether the testator is incapable
but have to record their findings (§ 28 Beurkungsge-
setz).
2.2 Consent to diagnosis and treatment
Apart from emergency cases, every medical inter-
vention requires the consent of the patient. If the
patient is incapable to give consent because, due to
his mental illness or disability he cannot understand
the importance and consequences of the treatment,
or is not able to decide for himself (“Einwilligungsun-
fähigkeit”), his legal representative has to decide on
his behalf. A legal guardian as well as an agent with
an enduring power of attorney must decide accord-
ing to the will, actual or presumed, of the patient. If
they intent to give consent to a medical treatment
with serious risks for health or life of the patient, they
have to obtain the permission of the court (§ 1904
BGB). Permission of the court is also required for a
veto against life sustaining treatment which the doc-
tor recommends (see Bundesgerichtshof [German
Supreme Court in Civil Matters], 2003 and 2005), and
for compulsory treatment of an institutionalised pa-
tient (§ 1906 BGB, see also Bundesgerichtshof, 2006).
2.3 Participation in research
In principle, the rules on medical treatment also apply
to medical research. It is, however, debatable wheth-
er the guardian is able to give consent to medical re-
search without direct benefit, or at least the chance
of it, for the patient who is incapable to give consent
himself. Apart from that, there is a wide range of leg-
islation, often induced by the European Union, which
set up additional requirements (e.g., § 41 Arzneimit-
telgesetz). For an overview see Deutsch and Spickhoff
(2003).
2.4 Advance directives
Advance Directives for medical treatment have been
at the heart of the ongoing debate on end-of-life deci-
sions in Germany. They were recently acknowledged
by the courts as legally binding directives provided
they are applicable to the specific situation and the
patient was not legally incapable when issuing them.
Even if not required by law, they usually are in writ-
ing. An advance directive remains valid until it is re-
voked or there is sufficient reason to believe that the
patient would have revoked it. The details have been
discussed elsewhere (Lipp, 2005).
2.5 Driving licence
There is no obligatory health check for the elderly to
keep their regular driving licences. A health check
and an eye check every fifth year beginning with the
age of 50 are required for persons with special driving
licences for lorries, buses and taxis (§ 48 sec. 5 Fahrer-
laubnisverordnung). A physician, due to the doctor-
patient confidentiality, may not disclose his diagno-
sis showing conditions interfering with driving to the
authorities unless there is sufficient reason that the
patient will actually endanger other persons.
References
Ahrens M (2005) Autonomie in Fesseln – Vorsorgevollmacht
und Vorsorgeverhältnis an den Schranken des Rechtsbera-
tungsgesetzes. Betreuungsrechtliche Praxis 14: 163–67
Bundesgerichtshof (2003) Beschluss vom 17. 3. 2003 – XII ZB
2/03. Entscheidungen des Bundesgerichtshofs in Zivil-
sachen 154: 205–30
Bundesgerichtshof (2005) Beschluss vom 8. 6. 2005 – XII ZB
177/03. Entscheidungen des Bundesgerichtshofs in Zivil-
sachen 163: 195–01
Bundesgerichtshof (2006) Beschluss vom 1. 2. 2006 – XII ZB
236/05. Betreuungsrechtliche Praxis 15: 145–49
Deutsch E, Spickhoff A (2003) Medizinrecht, 5th edn. Springer,
Wien New York
Lipp V (2000) Freiheit und Fürsorge. Der Mensch als Rechts-
person. Mohr Siebeck, Tübingen
119
Chapter 15: V. Lipp

Lipp, V (2005) Patientenverfügung und Lebensschutz. Zur
Diskussion um eine gesetzliche Regelung der „Sterbehilfe“.
Universitätsverlag, Göttingen
Lipp, V (2003) Die neue Geschäftsfähigkeit Erwachsener. Zeit-
schrift für das gesamte Familienrecht 2003: 721–29
Schwab D (2000) Kommentierung der §§ 1896–1921 BGB. In:
(Rebmann K, Säcker FJ, and Rixecker R, eds) Münchener
Kommentar zum Bürgerlichen Gesetzbuch Band 8: Fami-
lienrecht II, 4th ed. CH Beck, München, pp 1793–2172

120
Chapter 16
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: GREECE
Magda Tsolaki and Eleni Tsantali
1 The legislative frame for dementia
Currently, dementia in Greece is unfortunately not
even recognised as a type of disability. There is no legis-
lative frame, not even any mention of the term “de-
mentia”. The legal system refers only to patients with
psychiatric disorders and other categories of people
who are not demented. In addition, psychiatric and
demented patients are confronted by the legislation of
legal guardianship. This law aims to keep the disability
patients active and functional because of the respect
of their personality. Close relatives need a lawyer in or-
der to deposit the application form of legal guardian-
ship in Court and the closest relative will be proposed
as temporary and definitive legal guardian, although
other relatives (not more than 3) will be proposed as
members of the supervisory council. The legislation
anticipates similar self-appointed confrontation for
the patients who are alone or abandoned or who have
no relatives or other caregivers. However, there are al-
ways judicial debates among the closest relatives for
the financial resources management and especially in
cases involving many children. The Greek government
does not give financial assistance specifically for de-
mentia people even that provided to people with spe-
cific needs and the real situation is that:
(1) The dementia is not recognised as a mental dis-
ability, need specific care and inter-scientific
management,
(2) The dementia people are not placed among the
specific need patients,
(3) There is no solidarity assistance for the caregiv-
ers, or even permissions from their jobs in order
to care for dementia people,
(4) There is not the minimum financial assistance
because of dementia but there is a retirement
because of aging.
As a consequence of the previous mentioned there is
a legislation gap furthermore in issues related to de-
mented patients as testamentary issues, research is-
sues in dementia, the right of patients to refuse drug
treatment and so on. Now the Greek Association of
Alzheimer’s Disease and Related Disorders (GAADRD)
considering the European legislation about demen-
tia suggests a law frame in order to protect dementia
patients, to secure their rights and to ensure a bet-
ter quality of life for them and their caregivers. The
GAADRD managed recently the dementia people to
get free their drugs.
2 Competence in dementia
But how one can decide that an elderly has demen-
tia and about his/her competence? In Greece the as-
sessment of Alzheimer’s disease is made by memory
clinics in most of the cases being incorporated by the
departments of Neurological Clinics. The demen-
tia patients are accommodated in the same rooms
with patients of other neurological disorders and the
nurses are not trained for dementia. A patient com-
plaining of memory disorders needs at least a couple
of months in order to visit a memory clinic after a an
appointment arranged.
During the first visit, the clinician follows the
international standard steps for the diagnosis of de-
mentia; such as clinical, neuropsychological, labora-
tory and neuroimaging assessments. At least in the
urban areas this is done by interdisciplinary teams.
Chapter 16: M. Tsolaki and E. Tsantali
However, not all memory clinics use the same cog-
nitive battery for dementia although there exists a
large consensus regarding laboratory and neuroim-
aging assessments. After the first assessment and the
diagnosis followed by drug care, the patient visits the
memory clinic after 6 months for a follow up and per-
haps for a more detailed assessment.
Competence in Greece means an ability for the
patients to live on their own with a caregiver for su-
pervising his/her dailies activities, arranging his/her
basic financial obligations, taking care of the person-
al needs of feeding, dressing, communicating, and
walking. The assessment of competence in dementia
although ought to be based on an objective frame, at
the same time depends on an individual frame as the
age, the educational level, the socioeconomic level of
the patients (job, hobbies, family background, world
view) and the general cultural level. Though there are
some common accepted standards according to the
welfare in the elderly these are limited to the autono-
my in activities, the level of functionality, the ability
to communicate and the self-awareness of the sub-
ject about their own physical and mental health.
2.1 The assessment of competence (mental,
functional, driving, financial)
Perhaps neuropsychological assessment of dementia
is the best measurement for mental competence as it
can provide reliable and objective measures of cogni-
tive function and can be used as a supplementary tool
for the diagnosis of dementia and the non-pharmaco-
logical treatment. Although this is also influenced by
the level of education, age and the social background.
2.1.1 Mental competence
Mental competence is presupposed for complex cog-
nitive activities including financial management,
driving and self autonomy. Errors in the executive do-
main (loss of task, nonresponsive answers, and loss
of detachment) are key predictors of declining com-
petency performance by AD patients. Neuropsycho-
122
logical analyses in the AD group generally confirmed
the conceptual domain assignments of the qualita-
tive scores (Marson et al., 1999). In order to assess the
mental competence the clinicians frequently use the
scales of the Mini-Mental State Examination (MMSE)
(Folstein et al., 1975; Fountoulakis et al., 1999) and
for a more detail information the Alzheimer’s Disease
Assessment Scale – Cognitive Subscale (ADAS-Cog)
(Rosen et al., 1984) or select subtests of cognitive bat-
teries in order to have a more detail assessment.
2.1.2 Functional competence
A couple of scales frequently used in Greece for the as-
sessment of the autonomy and functionality in every
day life are the Instrumental Activities of Daily Living
(IADL) (Lawton and Brody, 1969), the Functional Rat-
ing Scale for Symptoms of Dementia (FRSSD) (Hutton,
1990), the Alzheimer’s Disease Activities of Daily Living
International Scale (ADL-IS) (Reisberg et al., 2001),
the Blessed Dementia Rating Scale (BDRS) (Blessed
et al., 1968), and less the Disability Assessment for De-
mentia Scale (DAD) (Gélinas et al., 1999).
The health professionals of the European Pro-
gram “Help in home” can assess the functionality of
elderly people at their home and offer primary care
(medications, cooking, shopping, nursing, cleaning).
But this help is not merely a daily one as even a mod-
erately demented patient needs 24 hour attention
from a caregiver. Family members and neighbours,
and in particular in rural areas, care for elderly de-
mentia patients, by enhancing the quality of the time
the patients live away from a nursing home.
In Greece there are more problems for assessing
the mental competence by the clinicians. The tools
commonly used worldwide have to first be translated
and standardised for the Greek population in order
to have a common criterion of assessment with the
other European countries.
2.1.3 Driving competence
Another aspect of autonomy and using instruments is
driving which was found to be mildly impaired in prob-

able AD drivers at a severity of Clinical Dementia Rat-
ing (CDR) 0.5. But the autonomy of the patients cannot
restrict the freedom and safety of other people since
AD drivers at a severity of CDR 1 cause significant traf-
fic safety problem both from crashes and from driving
performance (Drachman, 2004). There are no finished
or pressed studies in Greece about the correlation
between the first perception and judgment disorders
and dementia which lead to accidents and injuries,
particularly as the disease progresses. Although the
degree of the patient’s competence in everyday activi-
ties can be contacted by the caregivers and clinicians
to regularly assess competence, we know from other
researches that mild AD patients did not do as well
on-road driving tests, when given verbal directions
for following a specific route. Like many other skills,
driving ability declines slowly in the early stages of
Alzheimer’s, moreover, deciding when it’s time to give
up the car keys can be difficult for any elderly person
and his family (Drachman, 2004). There is an informal
consensus of the clinician and the family members in
order the AD patient to stop driving. A 65 old driver
is obliged to do a review of his/her licence contained
ophthalmologic and pathological tests but not cogni-
tive ones. The private driving schools are mediated in
order to review the driving licence of elderly people.
The reliability of the previous mentioned examina-
tions is valid, only if someone accepts that there is an
ethical background of the private driving schools. But
what happens if someone does not accept this?
2.1.4 Financial competence
Except for driving ability, financial capacity (Marson
et al., 1999) represents an issue of great significance
for AD patients and their families, and is a part of the
global management of a progressive illness in which
loss of capacity for instrumental tasks, such as driv-
ing and handling finances, can be planned for in ad-
vance. Financial capacity means almost intact basic
monetary skills, financial conceptual knowledge,
cash transactions, checkbook management, bank
statement management, and financial judgment.
Practice of competence assessment in dementia: Greece
This can be measured by using tools such as the Fi-
nancial Capacity Instrument tasks. Financial capacity
is already impaired in mild AD. In the first stages, fi-
nancial incompetence means deficits in more com-
plex financial abilities and impairment in most fi-
nancial activities, although in moderate cases, severe
impairment of all financial abilities and activities is
present. Unfortunately, hospitals don’t frequently use
a Financial Capacity Instrument task, and scrupulous
people can take advantage of demented patients as
they accompany them to the bank, alleging to take
money on the patients’ behalf.
Another aspect of competence in financial man-
agement is the creation of a testament. If the elderly
people prepares a testament before becoming de-
mented, the testament is accepted. In other cases, the
testament can be disputed by the heritors, frequently
referring to dementia as a psychiatric disorder. In
this case, the testament has restricted validity if the
heritors brings an expert on dementia with them to
court. Then the judicial dispute favours the rights of
the heritors.
2.1.5 Personality competence and nursing homes
Other aspects of competence in dementia are the do-
mains of language, executive dysfunction, affective
dysfunction, and compensatory responses. Incompe-
tence in language means for a patient more miscom-
prehension, factual confusion, intrusions, incoherent
responses, non responsive answers, loss of the ability
to perform and delgate tasks than the normal elderly
(Marson et al., 1999) The progressive loss of commu-
nication skills accompanied by functional disability,
behavioural disorders and the lack of free time for
family members lead to the placement of dementia
patients into institutes, most notably in larger cities.
According to a recent study (Melki and Belos, 2003)
about the institualization of elderly people in Greece
(1) 25% of institutionalized elderly people have no
children and no close relative (2d degree or no
relative people).
123
Chapter 16: M. Tsolaki and E. Tsantali
(2) 62% of institutionalized elderly people are en-
tered into nursing homes by their children. 35%
(1:3) are decided by their spouse (www.encepha-
los.gr).
2.1.6 Advance directives and end of life decisions
When the disease progresses the caregivers receive
advice from the Greek Association of Alzheimer’s Dis-
ease and Related Disorders, other non-profit associa-
tions about quality of life in elderly or private clini-
cians about the future of their patient and then they
decide what to do. But there is no legislation frame-
work about painless death or euthanasia, even in non
reversible diseases. When a patient refuses treatment,
there is cooperation between clinicians, especially
psychiatrists and psychologists, and the family in or-
der to act in the patients best interests since he/she
can’t decide for himself/herself.
3 Conclusions
The Greek Association of Alzheimer’s Disease and Re-
lated Disorders is now preparing a legislation frame-
work in order to suggest it to the Greek government
for helping dementia patients and their families,
protecting their human rights and ensuring their
welfare during the progression of the disease. In the
12 years of its’ existence, it has created more than 25
branches throughout Greece, promoted information
about dementia and especially Alzheimer’s disease,
and has advanced the assessment and the rehabili-
tation in dementia by creating Day Care Centres in
many Greek cities. It is a non profit association and
its’ funds come from volunteers, companies and the
Greek church. At the shown form it is organising an-
nual seminars for the health professionals and car-
egivers in order to help dementia people and their
families minimising their burden during the disease.
The counseling and help line services are also coop-
erating for this purpose.
124
References
Blessed G, Tomlinson BE, Roth M (1968) Association between
quantitative measures of dementing and senile change in
the cerebral grey matter of elderly subjects. Br J Psychiatry
114: 797–811
Drachman DA (2004) Safe driving: aging and Alzheimer’s dis-
ease (commentary). Neurology 63: 765
Feldman H, Sauter A, Donald A, Gèlinas I, Gauthier S, Torfs
K, Parys W, Mehnert A (2001) The disability assessment for
dementia scale: A 12-month study of functional ability in
mild to moderate severity Alzheimer’s disease. Alzheimer
Dis Assoc Disord 15: 89–95
Folstein MF, Folstein S, McHugh RR (1975) “Mini-Mental
State”: a practical method for grading the cognitive state of
patients for the clinician. J Psychiatric Res 12: 189–98
Fountoulakis KN, Tsolaki M, Iacovides A, Yesavage J, O’ Hara
R, Kazis A, Ierodiaconou CH (1999) The validation of the
short form of Geriatric Depression Scale in Greece. Aging
Clin Exp Res 11: 367–72
Gélinas I, Gauthier L, McIntyre M, Gauthier S (1999) Develop-
ment of a functional measure for persons with Alzheimer’s
disease: the disability assessment for dementia. Am J Oc-
cup Ther 53: 471–81
Hutton TJ (1990) Alzheimer’s disease. In: (RE Rakel, ed) Conn’s
Current Therapy. WB Saunders, Philadelphia, p 780
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maintaining and instrumental activities of daily living. The
Gerontologist 9: 179–86
Marson DC, Annis SM, McInturff B, Bartolucci A, Harrell LE
(1999) Error behaviours associated with loss of competen-
cy in Alzheimer’s disease. Neurology 53: 1983
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Reisberg B, Ferris SH, de Leon MJ, Crook T (1988) The Glo-
bal Deterioration Scale (GDS). Psychopharmacol Bull 24:
661–63
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ease activities of daily living international scale (ADL-IS).
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Alzheimer’s disease. Am J Psychiatry 141: 1356–64
Chapter 17
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: IRELAND
Mairead Bartley and Desmond O’Neill
1 Introduction
There has been a significant growth in the number
of older persons living in Ireland. In 2002, there were
436,001 people aged 65 and over living in Ireland,
just over 11% of the total population (Central Statis-
tics Office, 2002). It is expected that there will be ap-
proximately 840,000 people aged 65 and over in 2031,
more than twice as many as in 1996. In 1993, the Irish
government adopted The Years Ahead (Working Party
on Services for the Elderly, 1988) as an official policy
on health and social care for older people, and has
made significant commitments to the development
of specialist healthcare for older people (O’Neill and
O’Keefe, 2003).
Although the majority of older people lead in-
dependent lives, there is a significant minority that
has impaired capacity, chiefly because of dementing
illness, and at some stage will require assessment of
their capacity. The Irish government, spurred on by
(a) new mental health legislation in 2001 (Mental
Health Act, 2001), (b) a report of its own advisory
body on older people (National Council on Ageing
and Older People,1998) and (c) recommendations
of the government working group on elder abuse
(Working Group on Elder Abuse, 2002) has initiated
a process of reform of the law on older people which
for the first time addresses the need to consider ca-
pacity in terms of the acquired cognitive deficits of
the dementias.
As this reform of the laws relating to capacity is
a work in progress, this paper outlines (i) the exist-
ing practice for assessing capacity, (ii) current train-
ing norms, and (iii) the proposed changes of the Irish
Law Reform Commission (which has consulted wide-
ly with geriatricians, old age psychiatrists and other
health and social care professionals).
2 Current practice
In Ireland there is no specific legislation to define pre-
cisely what mental capacity exactly involves and how
it can be assessed. There is some legislation dealing
with mental disorder, the Mental Health Act of 2001,
and it is chiefly of importance as it recommends as-
sessment of capacity on the basis of function rather
than status, and therefore establishes an important
principle for the Irish health and legal systems.
Other areas of law focus on specific situations
such as capacity to make a will or consent to a medi-
cal procedure. Capacity to make a will or to marry is
often assessed retrospectively while capacity to con-
sent to medical procedures or engage in litigation
may have to be assessed either in the presence or in
retrospect.
The somewhat outdated Ward of Court system
and the newer Enduring Power of Attorney (EPA)
scheme require that legal competence be assessed
in general, in the present and for the future (Law
Reform Commission (LRC), 2003). The purpose of
wardship is to essentially protect the interests of the
ward (Mills, 2002). In order to be taken into wardship,
a person must be declared to be “of unsound mind
and incapable of managing his person or property”
(LRC, 2003). The President of the High Court or Cir-
cuit Court is established as the person’s legal guard-
ian, so that any decision making in relation to that
person must be made in conjunction with the court,
having the individual’s welfare as its main concern.
This page intentionally blank
Chapter 17: M. Bartley and D. O’Neill
The court will appoint a wardship committee (i.e., a
committed person or persons, rather than a commit-
tee in the conversational sense of the word) to man-
age the day-to-day welfare of the individual involved
and even give consent to medical treatment on their
behalf. In cases where the treatment is regarded as
serious the committee may ask the consent of the
court, however, what is regarded as “serious” remains
undefined (Madden, 2002). Wardship is currently the
only real option where a person is lacking in capacity,
but given the complete loss of civil rights involved is
relatively infrequently invoked.
In cases involving someone who is expected to
lose capacity over a period of time, as in dementia,
the patients can confer “Enduring Power of Attorney”
(EPA) on someone who can then make decisions on
their behalf. Under the Power of Attorney Act 1996 the
appointed attorney may have power over the prop-
erty, financial and business affairs and personal care
(but not health care) decisions of the donor if the per-
son becomes or is becoming mentally incapacitated
(Power of Attorney Act, 1996). For people who have
the foresight to put an enduring power of attorney
in place, the most significant advantage is that they
have chosen their own substitute decision maker
should they ever need one (LRC, 2003). A downside
is the lack of a systemic oversight by the state of the
administration of EPA’s.
A number of different words and phrases are
used to describe people who do not have legal capac-
ity. People are variously described in Irish or other
legislation as being incompetent, mentally incapable,
mentally disordered, dependent, and of unsound mind
(LRC, 2003). Recent Irish Mental Health legislation
recognises various categories of “mental disorder”
including intellectual disability, but this is concerned
with people who may benefit from psychiatric care
and not with legal capacity. Nevertheless, mental
disorder as defined under the mental health legisla-
tion may be an indicator of lack of legal capacity. The
Enduring Power of Attorney legislation uses the term
“mental incapacity”. The Criminal Law Insanity Bill
2002 deals with unfitness to plead, which may be re-
garded as a form of lack of legal capacity.
126
Adults are presumed to have legal capacity un-
less the contrary is proved. The onus of proving that
an adult does not have legal capacity rests on the per-
son asserting this.
Likewise, proving that an otherwise incapaci-
tated person has had a “lucid interval” rests with the
person asserting this, since there was a previously
assumed continuance of incapacity (LRC, 2003). The
capacity required by law relates to the decision in
question, that is that it is issue specific. This means
that there are different tests for capacity in relation to
such decisions. These are mainly derived from com-
mon law. A decision on legal capacity in relation to
one issue does not necessarily mean that the same
decision will be given in relation to a different issue.
There is a remarkable shortage of published in-
formation about the criteria for assessing whether
someone is mentally capable of managing and ad-
ministering his or her property and affairs. In partic-
ular, the assessment of capacity is not defined in ei-
ther the Irish biomedical literature or the guidelines
of the regulatory body for Irish doctors, the Medical
Council. The Medical Council’s guidelines (Medical
Council, 2004) on ethics provide some general but
undefined directions on capacity. In the first instance
they remind doctors that “disability does not mean
lack of capacity” and secondly that most patients
with psychiatric illness have capacity to consent. It
also advises doctors that, in the event of refusal of
treatment, an “assessment of capacity should be car-
ried out by a medical professional, in conjunction
with a senior colleague”. The assumption underlying
this lack of clear guidance on the methods of capacity
is that the doctor’s assessment aspires to the highest
standard of practice and behaviour, i.e., in line with
international best practice.
The British Medical Association has published a
“Consent Tool Kit” to assist healthcare professionals
in dealing with consent issues and incapacity (Brit-
ish Medical Association, 2003). This states that to
demonstrate capacity individuals should be able to:
(1) understand in simple language what the medical
treatment is, its purpose and nature and why it is be-
ing proposed (2) understand its principal benefits,

risks and alternatives; (3) understand in broad terms
what will be the consequences of not receiving the
proposed treatment; and (4) retain the information
for long enough to use it and weigh it in the balance
in order to arrive at a decision.
Overall, wide discretion appears to be allowed,
with little by way of the specification of the training
of the physician who undertakes the assessment, or
indeed of the framework within which it might oc-
cur (i.e., enabling) or the type of supports or tests in-
volved. However, the leading legal commentator on
law and medicine in Ireland has strongly endorsed an
enabling approach to capacity assessment (Madden,
2002).
3 Current training
As the Irish higher training in geriatric medicine and
old age psychiatry closely parallels that in the UK,
the training of trainees in each field is heavily influ-
enced by practices in the UK. The BMA/Law Society
book is widely used, and in general an approach is
emphasized which seeks to treat any remediable im-
pediments which might impair understanding, alle-
viate sensory deficits, and facilitate communication
through assistance of a speech and language therapist
or psychologist. A particularly helpful clinical scheme
for the assessment of capacity has been advanced by
Molloy (Molloy et al., 1999), and this approach is also
used in training SpRs.
4 The (near?) future
To this end we rely on recommendations from the
Law Reform Commission (Law Reform Commission,
2005), who have adopted a functional rather than
status approach to capacity assessment. Provision-
ally, the Law Reform Commission recommends the
following:
– there should be a statutory presumption of ca-
pacity;
Practice of competence assessment in dementia: Ireland
– the decision on general legal capacity should be
made by a tribunal composed of a Judge as chair-
man with appropriate medical and lay person-
nel, and with an appeal to the Circuit Court, and
further appeal to the High Court, they should
conduct an inquiry into the person’s capacity on
a non adversarial basis;
– there should be guidelines available to people
who are assessing capacity to ensure that the
assessment is a genuine objective assessment
of capacity and is not affected by issues such as
literacy, conventional views of values or other ir-
relevant matters;
– there should be a detailed definition of general
legal incapacity, which includes mental disorder
broadly as defined in the Mental Health Act 2001
and mental disability.
These guidelines have been formulated with active
participation from geriatricians and old age psychia-
trists, and hopefully will form the basis for a humane
and scientific approach to capacity assessment in the
near future
References
British Medical Association (2003) Consent Tool Kit, 2nd edn.
London
Central Statistics Office (2002) Cork, Central Statistics Office,
www.cso.ie
Law Reform Commission (2003) Consultation paper on Law
and the Elderly (LRC CP-2003). Law Reform Commis-
sion, Dublin; http://www.lawreform.ie/files/Consultation%20
Paper%20on%20Law%20and%20the%20Elderly%203-06-
03.pdf.
Law Reform Commission (2005) Consultation paper on vul-
nerable adults and the law. (LRC CP 37-2005). Dublin, Law
Reform Commission; http://www.lawreform.ie/files/Consul
tation%20Paper%20on%20Capacity%20_final%20version_
.pdf
Madden D (2002) Medicine, ethics and the law in Ireland. But-
terworths, Dublin
Medical Council (2004) A guide to ethical conduct and behav-
iour, 6th edn. Medical Council, Dublin
Mills S (2002) Clinical practice and the law. Butterworths,
Dublin
127
Chapter 17: M. Bartley and D. O’Neill
Molloy DW, Darzins P, Strang D (1999) Capacity to decide. New
Grange Press, Hamilton, Ontario
National Council on Ageing and Older People (1998) The law
and older people: A handbook for service providers. Na-
tional Council on Ageing and Older People, Dublin
O’Neill D, O’Keefe S (2003) Health care for older people in Ire-
land. J Am Geriatr Soc 51(9): 1280–86
Oireachtas na hEireann (1996) Power of Attorney Act 1996, s 6.
The Stationery Office, Dublin
128
Oireachtas na hEireann (2001) Mental Health Act, 2001. The
Stationery Office, Dublin
Report of the Working Party on Services for the Elderly (1998)
The years ahead – a policy for the elderly. The Stationery
Office, Dublin
Working Group on Elder Abuse (2002) Protecting our future.
Stationery Office, Dublin; http://www.dohc.ie/publications/
pdf/pof.pdf
Chapter 18
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: ITALY
Rosa Liperoti and Roberto Bernabei
1 Introduction
The diagnosis of dementia is associated with multi-
ple and difficult ethical issues which involve patients,
relatives, caregivers and health care providers. Indi-
vidual values, religion and culture may largely impact
patients’ and physicians’ behavior in managing such
ethical and legal aspects.
In Italy, a central role is played by the general
practitioner who may guide patients’ and families’
choices together with specialists involved in the care
delivery process. Nonetheless, adequate knowledge
on the norms regulating legal and ethical issues in
dementia is not systematically diffused among both
general practitioners and specialists and the integra-
tion of these aspects in the whole process of care is
strongly solicited.
Main ethical and legal issues in dementia, which
have been formally regulated in Italy, include the as-
sessment of driving competence and the assessment
of understanding and decision-making ability.
2 Assessment of driving competence
Driving a car is a complex activity, which requires
rapid reactions, ability to make judgements, memory
of rules, absence of practical experience, hearing and
vision impairment. Even in the early stages, dementia
may be associated with impairment of attention, of
orientation, of visuo-spatial ability, which may make
driving dangerous for patients and other people
(Adler et al., 2005). On the other hand driving is an
important psychological resource for most patients
with dementia. Prohibiting driving may represent a
source of frustration for patients and conflicts with
families (Snyder, 2005).
In order to reduce the risk of injury for patients
and other people, it may be necessary to require the
revocation of the driving license. The revocation pro-
cedure is regulated in Italy by the article 130 of the
“Nuovo Codice della Strada” (Revoca della patente di
guida). According to this norm, the Motorizzazione
Civile (which is the government office in charge of
regulating driving licenses) may revoke the license af-
ter a medical assessment documenting that the per-
son has no longer the physical and mental requisites
for driving. The license revocation is not possible
before the medical assessment. A relative, a legal tu-
tor, a legal caretaker, a local court judge may formally
express request of revocation to Motorizzazione Civ-
ile. Physicians taking care of the patients may only
instruct relatives about the revocation procedure or
in alternative they may directly report to the local
authority the need for license revocation. Following
a formal request of revocation, the Motorizzazione
Civile asks for a medical assessment of the patient by
the local health care agency. The medical assessment
may include both physical and cognitive evaluation.
Based on the results of the medical assessment, the
Motorizzazione Civile either accepts or rejects the
revocation request.
Driving license may be also revoked by Motor-
izzazione Civile through the periodic mandatory as-
sessment of the physical and mental requisites. The
frequence of such mandatory assessments is every 10
years for persons within 50 years of age, every 5 years
for persons between 50 and 70 years of age, every 3
years for persons after 70 years of age.
Chapter 18: R. Liperoti and R. Bernabei
3 Assessment of understanding and decision-
making ability
The assessment of understanding and decision-
making ability is a crucial issue in the evaluation of
patients with dementia. Indeed, an impaired ability
to understand and make wills may have a dramatic
negative impact on patients’ interests.
According to the Italian legal ordainment, the
ability to act, which implies the ability to understand
and make decisions, is acquired naturally after the
18th birthday and it lasts until death (Codice Civile,
Artt. 414–432). Nonetheless, the ability to act may be
limited or excluded through the procedures of ina-
biltiation or interdiction.
The inabilitation leads to a condition of relative
inability. The inabilitated person is considered capa-
ble of making acts of ordinary administration but he
or she needs to obtain the consent from a legal care-
taker or a judge to make acts of extraordinary admin-
istration such as buying and selling goods or accept-
ing and refusing inheritage.
The interdiction confers to the person a status
of total incapability to take care of his or her own in-
terests. The interdicted person loses the ability to act
and therefore, he or she must be assisted by a legal
tutor nominated by the local court judge. The tutor
must act in total respect of the interests of the inter-
130
dicted person but needs to acquire judge’s consent
for acts of extraordinary administration.
Inabilitation and interdiction procedures are
ruled by the “Codice di Procedura Civile” (Codice di
Procedura Civile, Artt. 712–720). Both procedures may
be requested by relatives, a legal tutor, a legal caretaker
or a local court. The request needs to be directed to the
local Court and it must explicitly state the facts sup-
porting it. The judge in charge to sentence must exam-
ine the person gathering information from relatives,
friends or medical expert consultation. The entire pro-
cedure requires usually long time to be completed. A
temporary legal tutor may be nominated by the judge
before the completion of procedure.
References
Adler G, Rottunda S, Dysken M (2005) The older driver with
dementia: an updated literature review. J Safety Res 36(4):
399–407. Epub 2005
Snyder CH (2005) Dementia and driving: autonomy versus
safety. J Am Acad Nurse Pract 17(10): 393–402
Codice Civile. Libro I Delle persone e della famiglia; titolo XII
Della infermità di mente, dell’interdizione e della inabilita-
zione. Artt. 414–432
Codice di Procedura Civile. Libro IV Dei procedimenti speciali.
Titolo II Dei procedimenti in materia di famiglia e di stato
delle persone; Capo II Dell’interdizione e dell’inabilitazio-
ne. Artt. 712–720
Chapter 19
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: THE NETHERLANDS
Marcel G.M. Olde Rikkert
1 Introduction
As in other countries, questions with regard to deci-
sion making in dementia in the Netherlands have to
be solved within a medical, legal and ethical frame-
work. The legal framework is primarily built on four
laws: the bill that regulates the patient-physician re-
lationship in medical diagnosis and treatment, the
bill that regulates admission into a psychiatric hospi-
tal against one’s will, the bill that regulates how medi-
cal research should be carried out, and the special bill
on guardianship for non-financial decision making.
None of these bills describes the way in which the
competence to consent should be assessed, nor do
they give a framework or present preconditions for
such an assessment. However, these bills are the le-
gal background for the assessment of competency to
consent.1 In the Dutch dementia guideline published
in 2005 (www.cbo.nl) recommendations have been
made to assess competence based on scientific evi-
dence, on this legal background, on a guideline pub-
lished earlier on this topic by the Royal Dutch Medi-
cal Society, and on consensus among leading experts
in the field on how to assess competence in medical
practice. Here we will briefly summarize these rec-
ommendations and thereby describe the current
practice on the assessment of competence for medial
procedures, for participation in research, for driving,
financial affairs (testaments) and advance directives.
1 sessment of these domains is even more complex
In Dutch the three care related laws are: Wet op de Genees-
kundige Behandelovereenkomst (WGBO), de Wet Bijzon-
dere Opnames Psychiatrische Ziekenhuizen (BOPZ) en de
Wet op het Mentorschap, respectively.
2 Competence in Dutch
The Dutch wording for competence is “wilsbekwaam-
heid” or “beslisvaardigheid”. Both words refer to the
ability to reach a reasonable judgement on one’s inter-
ests in a specific matter. This description is used in all
Dutch laws that say something on decision making
competence. Competence to make a decision is often
regarded as equal to the competence to give informed
consent for a certain matter. Evaluation of decision
making competence therefore is often carried out
by assessing whether subjects meet the criteria for
proper informed consent. Consensus based, Dutch
medical and legal practice generally divides compe-
tence for informed consent in four levels:
(1) The ability to make a choice and to make this
choice known;
(2) The understanding of the information connect-
ed to the decision to be made;
(3) The ability to weigh this information, including
risks, burden and potential benefits of diagnos-
tic and treatment options, and the possible alter-
natives;
(4) Being able to process this information ratio-
nally.
Additionally, it is felt that emotions, identity and
relationships may also determine competence to
consent to a certain level (Widdershoren and Bergh-
mans, 2002). Though widely accepted, objective as-
and currently cannot be based on valid diagnostic
instruments. Therefore, the questions of competence
to consent most often are referred to psychiatrists in
Chapter 19: M.G.M. Olde Rikkert
the Netherlands, who are accepted to be experts not
only with regard to cognition, but who also are able
to weigh will, emotion, mood, personhood and patho-
logy within these mental domains.
Furthermore, there is broad consensus on the
fact that competence depends on the context and
the subject to be discussed, and that this ability may
change over time, also within a short while. In prac-
tice however, repeated assessments for competence
are only carried out very rarely. Legally, all physicians
are allowed to judge whether their patients are capa-
ble to consent, and this only should be explicitly ques-
tioned and investigated when behaviour gives rise to
serious doubts on competence. Otherwise, patients
are accepted to be competent. In general, it is accept-
ed, as the dementia guideline also states that demen-
tia diagnosis does not equal incompetence. However,
in clinical practice this is not always properly taken
into account. Physicians do not all get formal train-
ing in assessment of competence, and therefore are
not all warned for common pitfalls in investigating
competence with regard to medical or non-medical
decision making.
3 Competence for medical decision making
Formally, dementia diagnosis is accepted to be of no
or only limited value in the assessment of competence
to consent, and it is widely accepted that a valid as-
sessment requires a specific investigation, which goes
beyond diagnosis (Schmand et al., 1999). The Dutch
dementia guideline mentions some possibilities:
(1) Unstructured clinical judgement by a medical
specialist. Usually the principle of “proportional-
ism” is used in such a competence judgements.
This means that as the impact of the decision in
increasing, the criteria to judge a person as capa-
ble to consent become more and more strict.
(2) Neuropsychological tests may be used as a tool
towards good judgement on competence, but
are accepted not to replace clinical judgement.
The Mini Mental State Examination is often used
132
as first line screening instrument, to get a rough
idea of memory function and other cognitive
functions. Other, more sophisticated tests may
also be used for this purpose (e.g., Camcog, Can-
tab, etc). Having judged a patient as incompe-
tent, physicians still are obliged to inform these
patients, adapted to their understanding, and
ask them orally for agreement with the treat-
ment plan.
(3) At some places, but primarily in the context of
research, clinical vignettes may be used for the
assessment of competence (Vellinga et al., 2002).
In general within the Netherlands, vignettes and
specific assessment tools such as MacCat-T/R
are accepted to be of use, but they are not re-
placing clinical judgement, both because of lack
of experience and insufficient feasibility in busy
daily practice.
4 Competence for participation in research
In the Netherlands Medical experiments are subject
to the Act on Medical Research Involving Human
Subjects (WMO). This Act covers scientific research
in which people are subjected to interventions or
have to follow established behavioural rules. The
WMO has been in force since 1 December 1999, but
has been revised since March 2006 to take account of
the implementation of the EU Good Clinical Practice
Directive (2001/20/EC). The website of the national
institute (CCMO) that safeguards execution of the
WMO (www.ccmo.nl) asks researchers (as one of the
many questions that have to be answered to acquires
ethical approval) whether they want to conduct re-
search with subjects incompetent to consent. How-
ever, this website does not tell how this competence
should be assessed. In research practice this lead to a
wide heterogeneity in assessing competence, ranging
from no formal assessment to assessment with the
Mac-CAT-Research tool (Olde Rikkert et al., 2005).
The CCMO states that if a patient is considered
incapable to consent, using the best methods avail-
able to judge capacity for a specific study, a represent-
This page intentionally blank
 Practice of competence assessment in dementia: The Netherlands
ative has to give informed consent. According to the
WMO this may be a legal representative, the partner,
parents, children, and brothers or sisters. However,
the WMO also does not give details how this so called
third party should give informed consent. The as-
sessment of competence of the representative is also
not discussed, but still this may be a highly relevant
issue. This leaves important questions to be solved,
for example because these third parties may have
interests of their own in the study. Interests of rela-
tives can be related to information on their genetic
status, but also to an interest in the development of
a therapy for AD by means of the study. When rela-
tives of an incompetent person have more interests
in the participation in research of their incompetent
relative than the incapacitated relative him/herself,
it can be disputed whether these relatives are still
the most adequate persons to give consent as a third
party. Are they still able to decide in the best interest
of their relative, and are they themselves competent
to consent? Or do the interests they have disqualify
them as representatives who may give consent? And
if a nearest proxy is disabled, who next should con-
sent on behalf of the incompetent adults, or should
patients be excluded from research participation in
such cases?
In practice, the problematic assessment of com-
petence for the decision on research participation,
and the risk of conflict of interest of proxies is often
circumvented by the so called “double consent proce-
dure”. In this procedure a proxy consents for research
participation and the research subject also gives
written informed consent, or at least agrees verbally
(the so-called “assent”). This double consent or addi-
tion of the subject’s assent is relevant, because with
decreasing competence, persons may become more
risk aversive (Verheggen et al., 1998). This also may
counterbalance proxies, who might have a preference
for participation in specific studies, because of other
than only best interest arguments.
5 Competence for driving license
Within the Netherlands, by ministerial traffic regula-
tion the diagnosis of dementia still is judged equal to
incompetence to drive a car. Thus, driving licences
are retracted when the national institution (www.cbr.
nl) is notified of a dementia diagnosis by a physician,
a family member or patient him- or herself. In prac-
tice however, neither patients nor families are obliged
to mention their diagnosis to the driving license
agency, while physicians often feel restricted by the
Hippocrates oath, which also promises professional
secrecy. In short, this presents an urgent dilemma,
which often causes problems in clinical assessment
of patients in Dutch memory clinics. Patients are very
reluctant to give up driving privileges and often con-
sider their driving as being safe, while family mem-
bers do not dare to challenge this assertion and phy-
sicians feel restricted in their ability to actively solve
this problem. In case the driving licence agency is no-
tified of cognitive problems, without that its having
being formally stated as a diagnosis of dementia, the
formal testing of driving capacity, which currently is
the gold standard test, will be performed. However,
it is still highly arbitrary with whom this test is per-
formed and with whom it is not. Thus, the best test
of assessment of competence for driving currently is
not adequately positioned.
At the moment new regulations are prepared by
the ministry of traffic, and it is hoped that some sort
of formal driving test will be properly embedded in
the new procedure of assessment for competence for
driving. Moreover, the communication on and inter-
pretation of dementia diagnosis, and other levels of
cognitive decline, has to be updated towards current
state of the art in this specific area of dementia-re-
lated research.
6 Competence in financial decisions
Until very recently, lawyers, and sollicitors in the
Netherlands played a key role in assessment of com-
petence for financial decision making, such as writ-
133
Chapter 19: M.G.M. Olde Rikkert
ing a testimony, without a certain description or
guideline on how this should be done. This gave rise
to many legal procedures, in which family members
disputed these implicitly made legal judgements.
From 2006 onwards however, there is a guideline for
professionals working in court or with relevant finan-
cial responsibilities (inspired by the MacCAT-assess-
ment tools for competence) which should be used
for the assessment of competence. Assessment of
competence, when formally targeted, should now be
carried out by asking several questions with regard
to the decisions to be made. This really allows the as-
sessment as to whether a client is able to adequately
judge his or her interest in a certain case. Of course,
the guideline also suggests to ask for a medical expert
opinion when serious doubts arise on competence to
consent.
Altogether, this is an enormous step forward in
current practice of competence assessment. Now le-
gal practice should focus on implementation, teach-
ing and training according to this guideline.
7 Competence for declaring living wills
Living wills are potentially having an important im-
pact on future decision making, both in medical and
non-medical decisions. Dutch law very strongly au-
thorizes the legal value of such wills when they are
written in a state of being able to adequately judge
one’s own interests. However, here again it is not spec-
ified how this competence should be assessed. Thus,
sharp problems may and sometimes do arise when
later, after months or years of disease progression,
a living will should be followed. Judging the compe-
tence to declare a living will, at a time period months
or years ago, is very difficult and often impossible, re-
sulting in living wills that may not be followed. Some
living wills themselves, of which many paper versions
are available within the Netherlands, require that the
patient does some explicit statements on his or her
mental competence for decision making. However,
without an objective assessment of competence by
a professional with experience in this field, even this
134
self declaration of competence has insufficient reli-
ability and validity when it comes to important deci-
sion making.
Though in foreign countries the idea may exist
that most of the Dutch end of life decisions are based
on living wills (or declarations for euthanasia), this
is far from reality. Living wills are used in a minor-
ity of the cases in which end of life decisions have to
be made. Nevertheless, this also is an area of compe-
tence assessment, which could still be arranged bet-
ter within the Netherlands.
8 Conclusion
Depending on the context of decision making, the as-
sessment of competence within the Netherlands has
to fulfil specific ethical and legal conditions, as de-
tailed in laws on medical research, treatment agree-
ment and guardianship. However, so far there is only
limited attention to clearly describing the procedures
of assessment of competence for the medical and
non-medical professionals, who are given the author-
ity to perform these assessments. Both in competence
assessment for diagnostic and treatment decisions,
for driving licence, for participation in research, for
financial decision making and for stating living wills,
there is room for improvement in daily practice. Re-
search is needed to develop procedures for compe-
tence assessment that are both feasible, valid and fit
for the specific area of decision making. Implemen-
tation of guidelines already available, and training
professionals in these skills, should have high priority
on the agenda’s on quality improvement. Dutch pro-
fessionals, patients and families have to be carefully
guided and trained in the assessment procedures of
competence to be able to sail safely between the Scyl-
la of avoiding that competence is assessed too often,
and the Charybdis of not assessing competence ad-
equately, because both may result in decisions, from
which the frail elderly subjects may suffer.
 Practice of competence assessment in dementia: The Netherlands
References
Widdershoven G, Berghmans R (2002) Wilsbekwaamheid in
de ouderenzorg. Tijdschr Gerontol Geriatr 33: 201–06
Schmand B, Gouwenberg B, Smit JH et al. (1999) Assessment
of mental competency in community-dwelling elderly.
Alzheimer Dis Assoc Disord 12: 80–7
Vellinga A, Smit JH, Leeuwen E van et al. (2002) De beoordeling
van wilsbekwaamheid bij ouderen met en zonder cognitie-
ve stoornissen: de vignetmethode nader bekeken. Tijdschr
Gerontol Geriatr 33: 207–11
Olde Rikkert MGM, Lauque S, Frolich L, Vellas B, Dekkers W
(2005) The practice of obtaining approval from medical
research ethics committees: a comparison within 12 Euro-
pean countries for a descriptive study on acetylcholineste-
rase inhibitors in Alzheimer’s dementia. Eur J Neurol 12:
212–17
Verheggen FWSM, Nieman F, Jonkers R (1998) Determinants
of patient participation in clinical studies requiring in-
formed consent: why patients enter a clinical trial. Patient
Educ Couns 35: 111–25
135
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Chapter 20
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: NORWAY
Knut Engedal and Øyvind Kirkevold
1 Competence and legal capacity
In the discussion about legislation and dementia in
Europe, it seems there exist an agreement that the
terms “competence” and “incompetence” should be
restricted to a person’s legal status, whereas physi-
cians should use terms like “capacity” and “incapac-
ity” when evaluating a person’s mental status (Post
and Whitehouse, 1995). However, some authors pre-
fer to use the terms “capacity” or “incapacity” for
legal status (Gove and Georges, 2001; Jones, 2001).
Thus, “capacity” and “competence” are used as syno-
nyms in legal terminology. In cases when a person is
incompetent, most Western countries have legal pro-
visions that allow for the appointment of a guardian
to handle an adult person’s welfare and financial in-
terests (Gove and Georges, 2001; Kapp, 2001). Apart
from that, medical treatment, care or admission to
an institution without the patient’s consent is usually
part of the mental health legislation.
2 Legislation in Norway
In Norway, the patients’ rights have been a public
concern for several years. A white paper investigating
the topic where published in 1992 (NOU 1992:8) and
the Patients’ Rights Act (PRA) passed the Norwegian
parliament the 2 July 1992. The PRA gives patients
right to emergency care, right to evaluation of his/her
health condition and right to a re-evaluation. On the
other side the municipalities (Act no. 66 of 19 Novem-
ber 1982 relating to Municipal Health Services) and
the hospitals (The specialist health care act 1999) are
entitled to give necessary health care.
In the PRA adult patients are given full autono-
my over the health care by giving the patient widely
rights to participation and information regarding
medical treatment and care (Chap. 3). “If an adult pa-
tient is obviously incapable of safeguarding his or her
own interest due to physical or mental disorder, se-
nile dementia or mental retardation, both the patient
and his/her next of kin are entitled to information”
(Sect. 3.3). The health worker that gives the informa-
tion to the patient has a clear obligation to do what
is possible to make the person understand. In Sect.
3.5 it is stated: “Information shall be adapted to the
qualification of the individual recipient, such as age,
maturity, experience and cultural and linguistic back-
ground. The information shall be provided in a con-
siderate manner. As far as possible, health personnel
shall ensure that the patient has understood the con-
tents and significance of the information.”
Health care may only be provided with the pa-
tient’s consent, unless legal authority exits or there
are other valid legal grounds for providing health
care without consent (Chap. 4). Valid legal grounds
are if the patients receive care under the Psychiatric
care legislation or if a patient is of full legal age and
legal capacity is not competent to give consent (Sec-
tion 4.6).
Section 4.6 in the PRA gives procedures for proxy
consent to health care of patients are obviously in-
capable to consent, but healthcare by proxy consent
may not be provided if the patient objects thereto.
Since patients with dementia rarely are under
psychiatric healthcare, the sentence “obviously inca-
pable…due to…senile dementia” is the only possibil-
ity the healthcare system has to omit the person with
dementia’s autonomy regarding medical treatment,
Chapter 20: K. Engedal and Ø. Kirkevold
care and placement in institution. There are no other
definitions of obviously incapable or criteria for be-
ing in such a state.
In Norway there is a Legal incapacity Act from
1898. This Act describes procedures to put a person
under legal guardians. In Norway, persons are rarer
than seldom put under legal guardian due to demen-
tia and this act has no practical implication when
judging a persons competence.
A revision of the PRA is expected to pass the par-
liament during the autumn 2006. In this revision it is
suggested that under certain circumstances shall be
possible to provide necessary healthcare even if a pa-
tient resist. It is no further definition of “incapable” in
this revision.
3 Assessment of competence
In the legalisations in Western countries the princi-
ple of autonomy is strong. Autonomy is defined as
the capacity to think, decide and act on the basis of
rational thought (Harrison, 1993; Hillan, 1993). It is
an important question whether or not demented
individuals are capable of autonomous thought and
actions. Harrison (1993) concludes that persons with
dementia probably are capable of autonomous ac-
tions in the early stages of the disease, but that they
later on lose their autonomy. Wilkinson (2001) has set
up three aspects that must be considered when judg-
ing the autonomy of persons with dementia. Firstly, a
diagnosis of dementia does not automatically mean
a judgement of incapacity, as the person may still
be able to make a range of decisions. Secondly, per-
sons with dementia are a heterogeneous group with
respect to cognitive capacity and decision-making
capacity. Thirdly, an individual’s level of understand-
ing can vary according to the nature or complexity of
the decision to be taken. In addition it is important
to consider the consequences of a decision. Low-risk
consequences can offset limits in capacities, where-
as high-risk consequences require a more stringent
assessment (Post and Whitehouse, 1995). How the
decline of functional capacity in different areas is
138
related to “legal competence” (or “legal capacity”)
to make decisions is complicated and needs an in-
dividual assessment in each patient. These aspects
are discussed in Norway among stakeholders, health
personnel, policy makers and law smiths, but it is
far from implemented in the Norwegian legislation.
Some aspects are due to be implemented in the near
future.
Since 1990 issues related to dementia, such as
how to carry out a diagnostic work-up, medical treat-
ment and care, and how to evaluate driving capacity
have been focused in national programs in Norway.
As a result diagnostic tools and national guidelines
for diagnostic work-up, treatment and care have
been developed. Guidelines how to assess the driv-
ing capacity of a person with dementia has also been
suggested Methods and guidelines how to assess the
competence of persons with dementia have not been
developed. Even though the diagnostic tools do not
contain items that measure competence, several as-
pects of legal capacity can be evaluated by using the
diagnostic tools, following the principle outlined by
Wilkinson (2001). Judgment of the competence or
capacity of a person with dementia therefore, will be
done in several ways, depending on physicians’ and
nurses’ knowledge and experience about dementia.
In nursing homes where the prevalence of severely
demented patients is extremely high doctors and
nurses have to deal with this question daily. Normally,
they will not use standardised methods in the judg-
ment of competence, but relay on their experience
and diagnostic tools used, using Wilkinson’s three
principles. The same is the case when a patient is re-
ferred to a specialised memory clinic at a university
hospital.
Even though many doctors use a systematic
and individual approach to assess a person’s compe-
tence, this is not always the case. To ensure that all
people with dementia are assessed adequately, im-
provements must be done within several areas. It is
a challenge to implement diagnostic tools and stand-
ards for evaluation to personnel at various levels of
health care, and to adjust the tools according to new
knowledge. The diagnostic tools used for evaluation
 Practice of competence assessment in dementia: Norway
of dementia explicitly and assessment of competence
implicitly have been improved the last fifteen years,
but there is a long way to go.
References
Gove D, Georges J (2001) Perspectives on legalislation relating
to the rights and protection of people with dementia in
Europe. Aging Mental Health 5(4): 316–21
Harrison C (1993) Personhood, dementia and the integrity of a
life. Canad J Aging 12(4): 428–40
Hillan EM (1993) Nursing dementing elderly people: ethical is-
sues. J Adv Nurs 18(12): 1889–94
Jones RG (2001) The law and dementia – issues in England
and Wales. Aging Mental Health 5(4): 329–34
Kapp MB (2001) Legal interventions for persons with demen-
tia in the USA: ethical, policy and practical aspects. Aging
Mental Health 5(4): 312–15
Post SG, Whitehouse PJ (1995) Fairhill guidelines on ethics of
the care of people with Alzheimer’s disease: a clinical sum-
mary. Center for Biomedical Ethics, Case Western Reserve
University and the Alzheimer’s Association. J Am Geriatr
Soc 43(12): 1423–29
Wilkinson H (2001) Empowerment and decision-making for
people with dementia: the use of legal interventions in
Scotland. Aging Mental Health 5(4): 322–28
139
Chapter 21
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: POLAND
Andrzej Kiejna, Joanna Rymaszewska, and Tomasz Hadryś
1 Introduction
Based on expert opinion, it has to be stated that the
English word “competency” does not have an unam-
biguous synonym in Polish. It can mean in the first
sense, in legal terms – which is the ability to act in le-
gal matters, and less commonly, in the second sense,
it can pertain to „competence” and words derived
from this stem (Flisiak, 2003). In this article compe-
tency should be understood in legal terms, since the
wider meaning of the word cannot be exactly con-
veyed in Polish. It could be said that it is a relatively
new concept, which only now is being researched and
defined (Morasiewicz, 2000). This new understand-
ing of „competency” allows it to be understood inde-
pendently of the definition in legal terms (Da˛browski,
1998). According to Safjan the ability to express agree-
ment is not an expression of will in a strict sense, but
belongs to a different juridical category from the abil-
ity to act in legal matters (Safjan, 1998). Safjan states,
that the ability to express agreement does not lead to
actions having legal consequences, but is a “personal
good” – the ability of autonomous decision making.
The relations of individuals with society, includ-
ing the health service, is regulated in various legal
acts, in which various concepts connected with the
word “competency” appear.
Polish medical law, which also pertains to psy-
chiatry, distinguishes between the sources and prin-
ciples of law (Da˛browski et al., 2006). The most im-
portant categories of these sources are:
– The Constitution of the Republic of Poland,
– The Medical Ethical Code, which regulates al-
most all the essential issues of medical law, such
as patients’ rights and informed consent,
– The European Convention on Human Rights and
Dignity of Human Beings Regarding Applications
of Biology and Medicine.
The European Convention from 11th November 1996
contains complex regulations of all the relevant med-
ical and psychiatric issues, such as the principle of
free and informed consent and protection of persons
incapable of expressing it.
The principles of medical law, similarly to the
sources, do not have a normative character, but are
contained in sources and serve as generalizations of
detailed norms. The most important principles asso-
ciated with psychiatric proceedings are:
– the principle of the patient’s good (salus aegroti
suprema lex est) and its specific directives: equal
access to medical health care services, appropri-
ate medical care,
– the principle of protecting a patient’s dignity, reg-
ulated in the Health Care Facilities Act – HCFA
(the right to intimacy and the respect of dignity)
and in the Physician’s Profession Act – PPA (the
obligation of keeping patients’ medical informa-
tion confidential),
– the principle of protecting a patient’s autonomy
by related detailed directives, such as a patient’s
right to express free and conscious consent and
the conditions under which medical interven-
tion is to be carried out without a patient’s con-
sent (PPA).
The main constitutional regulations in medical and
psychiatric matters are cited in various paragraphs
in the Constitution (1994), where is stated that “the
inherent and inalienable dignity of any person shall
Chapter 21: A. Kiejna, J. Rymaszewska, and T. Hadryś
constitute a source of freedoms and rights of persons
and citizens. It shall be inviolable. The respect and
protection thereof shall be the obligation of public
authorities.”
2 Capacity to enter into a contract, including
financial affairs
According to Polish law, there are no so called natu-
ral incompetencies in legal terms caused by the mere
fact of having a psychiatric disease or mental disabil-
ity. Competency as interpreted in the Polish legal sys-
tem is understood as the ability to carry out actions
in legal matters in one’s own name, i.e., to understand
expressions of will and express one’s own will aimed
at creating, changing or dissolving legal relation-
ships, in other words, the ability to independently
shape one’s legal position (obtain rights and assume
responsibilities). The ability to act in legal matters is
regulated in detail by the Civil Code (1964).
In the Civil Code personal rights, especially
health, liberty, honour, freedom of conscience, sur-
name or pseudonym, image, confidentiality of corre-
spondence, protection of home and family, scientific,
artistic, inventive and rationalizing activities are pro-
tected, regardless of other legal provisions providing
such protection. Additionally any statement given by
a person, who for whatsoever reason was in a state
excluding the possibility of conscious or free decision
making and expression of will, is invalid (Art. 82).
This pertains in particular to mental illness, mental
retardation or other, even temporary, disturbance of
mental functioning (Da˛browski et al., 2006).
Competency to act in legal matters may be full,
limited or lacking. Adult individuals have full com-
petency (§ 11) to act in legal matters (and thus not
all individuals have such competency, unlike legal re-
sponsibility, which each individual possesses), as well
as all corporate bodies. Minors, who are at least 13
years of age, have limited competency to act in legal
matters, as well as individuals who are partially in-
capacitated and individuals who have been assigned
a temporary legal adviser by the courts during pro-
142
ceedings assessing whether the individual has lim-
ited competency (§ 15). According to Polish law, mi-
nors of less than 13 years of age and individuals who
are totally incapacitated are not legally competent
(§ 12).
According to the Civil Code, the mere fact of
having a psychiatric disease is not a sufficient condi-
tion to state an individual is not legally competent,
incompetence only applies in cases where an individ-
ual does not have control over his own actions. Not
every psychiatric disease is associated with such ef-
fects. The effects depend on the nature and the acute-
ness of a disease, as well as the individual symptoms
observed in an individual. Hence, apart from the di-
agnosis of a disease (or mental retardation or other
psychiatric disorder), the opinion of an expert psy-
chiatrist is needed. This opinion should contain a de-
tailed assessment of an individual’s ability to control
his/her own actions, based on an in-depth analysis of
the individual’s behaviour/actions, contact with oth-
ers, e.g. family members and at work.
In criminal law there is a concept of an interme-
diate state, in which the competence (responsibility)
of an individual may be said to be diminished to a sig-
nificant degree, which may be used in sentencing. This
concept does not appear in civil law (Radziwiłłowicz
and Gil, 2004). Unambiguous categorization of an in-
dividual’s competency to act in legal matters, includ-
ing testing, is often impossible.
3 Capacity to enter into marriage
According to the Family and Protective Code (Art. 11)
an entirely incapacitated person cannot marry (§ 1).
Because of the incapacitation each of spouses can
demand annulment of a marriage (§ 2). It isn’t pos-
sible to annul a marriage because of the incapaci-
tation if the incapacitation was overruled (§ 3). A
person touched with mental disorder or the mental
deficiency also cannot marry (Art. 12. § 1). For if the
state of the health or the mind of this sort of person
isn’t threatening the marriage or the health of the
future offspring and if this person wasn’t entirely in-

capacitated, the court can allow her to marry. Each
of spouses can demand annulment of a marriage be-
cause of mental illness or the mental deficiency of
one of spouses (§ 2). It is not possible, however, to an-
nul a marriage because of the mental illness of one of
spouses after this illness had receded (§ 3).
4 Advance directives and end of life decisions
There are no legal acts regulating the possibility of
advance directive and end of life decisions.
5 Consent to treatment, hospital or nursing
home admission
In Physician’s Profession Act there are the statements
that (Art. 32. § 1) a physician may conduct an exami-
nation or provide other medical services, with the
exception of conditions stated within this Act, only
after obtaining a patient’s consent. Additionally (§ 2)
in cases of minors or those incapable of expressing
conscious consent, the consent of their legal repre-
sentative is required. If a subject has no such repre-
sentative or communication with him/her is impos-
sible, consent is given by the Guardianship Court.
Additionally, examining or providing a patient
with any medical service without his/her prior con-
sent is allowed only when immediate medical atten-
tion is required due to a patient’s medical condition,
or when due to advanced age a patient is incapable
of expressing his/her will and contact with that pa-
tient’s legal or de facto representative is impossible
(Art. 33. § 1).
Finally, the concept of “competency assessment
in dementia” may also apply to hospitalization in a
psychiatric ward without an individual’s agreement.
Article 21, § 1 of the Mental Health Act (1994) states
that “a person whose behaviour indicates that, due to
mental disorders, he/she may pose an imminent dan-
ger to his/her own life or life or health of others, or
a person incapable of satisfying his basic vital needs
self-sufficiently, may be subjected to a psychiatric ex-
Practice of competence assessment in dementia: Poland
amination also without his/her consent; if the person
is a minor (under 18 years of age) or totally incapaci-
tated, the consent of his/her legal representative shall
not be required either…”. In turn, § 2 states that “the
necessity of conducting the examination referred to
in § l shall be ascertained by a psychiatrist or – if the
assistance of a psychiatrist is unavailable – by any
other physician. Prior to the examination the person
concerned or his/her legal representative shall be
informed of the reasons for being examined without
consent”.
According to Art. 38 a person who, due to men-
tal illness or mental retardation, is incapable of self-
sufficiently satisfying his/her basic vital needs, has
no possibility of obtaining care from others and
needs continuous care and nursing services but does
not require hospital treatment, may be admitted to a
nursing home with his/her own or his/her legal rep-
resentative’s consent.
If the person referred to in Art. 38 or that per-
son’s legal representative does not give consent to ad-
mission to a nursing home, while lack of care poses a
risk to that person’s life, a social welfare agency may
apply to the Guardianship Court appropriate to the
person’s place of residence and file a motion for his/
her admission to a nursing home without that per-
son’s consent (Art. 39).
The motion referred to in § l may also be filed
by the head of a psychiatric hospital if a hospitalized
person is incapable of self-sufficiently satisfying his/
her basic vital needs, requires continuous care and
nursing but does not require further treatment in
that hospital (§ 2).
If the person in need of referral to a nursing home,
due to his/her mental state, is incapable of giving his
consent, the Guardianship Court shall adjudicate the
referral of such a person to a nursing home (§ 3).
All of these legal acts, including those directly
related to medical care, fail to consider advanced age
or individual conditions, e.g. dementia. The stand-
ards regarding the treatment of individuals with de-
mentia are thus covered in the regulations regarding
adults (above 18 years of age).
143
Chapter 21: A. Kiejna, J. Rymaszewska, and T. Hadryś
6 Testamentary capacity
According to the Art. 944 of Civil Code to write out
and to revoke the will can only person having the full
active capacity. The will is invalid if it was written out
in the state turning off conscious or free coming to
the decision and the expression of will (Art. 945).
7 Driving and dementia
Polish driving licenses are normally granted for an
unlimited period.
According to Art. 90 of the Highway Code the
driving license receives person who got the medical
statement about the lack of health contraindications
against driving and the psychological statement
about the lack of psychological contraindications
against driving provided it is required. Testing the
state of health and psychological predispositions for
steering vehicles is regulated by Art. 122. The medical
assessment is carried out in case of:
(1) person applying for the driving license or the
certificate to the qualifications,
(2) person applying for restoring the entitlement
for driving withdrawn on account of the state of
health,
(3) driver directed by the body of the road control,
if:
(a) participated in a road accident, in which
someone was killed or wounded,
(b) drove in an intoxicated state,
(4) driver directed with decision of county official in
cases of safety, such as for the state of health.
There are no legal regulations for physicians or social
care regarding cases in which an individual develops
a condition which negatively influences his/her abil-
ity to drive (Kloszewska and Kwiecińska, 1997). Regu-
lations in place in various countries, e.g. the United
Kingdom (“An At a Glance Guide to the Current Medi-
cal Standards of Fitness to Drive”) clearly define the
criteria that individuals with somatic and psychotic
144
disorders must fulfil, in order to hold a driving li-
cense (DVLA, 1996). The responsibilities of doctors,
including psychiatrists, to inform patients about any
restrictions on an individual due to his/her health are
also regulated. The American Psychiatric Association
has also introduced such regulations (Reifler, 1995).
8 Competency assessment procedures
No official procedures or professional standards have
been defined in order to assess legal competency.
None of the following criteria for assessing compe-
tency appearing in the literature – Roths competency
to agree to medical intervention, Somerville’s theory
of emotional competence, Drane’s Risk Dependent
Competence – neither have been subject to wider
discussion nor have inspired clearly defined stand-
ards for such procedures (Da˛browski, 1998). An as-
sessment of competency is based on an interview
and psychiatric examination given by a doctor or psy-
chiatric specialist. The doctor’s decision depends to
some degree on this examination and his/her know-
ledge and skills.
Questions regarding the choice of a psychiatric
specialist are addressed in very general terms, do not
contain any strictly defined regulations regarding the
qualifications of a specialist and the form of an ex-
amination to assess competency or mental capacity.
The creation of appropriate regulations on qualifica-
tions and provision of training in the field of forensic
psychiatry and psychogeriatry need to be addressed
in the near future. The formation of the Polish Asso-
ciation of Geriatric Psychiatry and the Polish Asso-
ciation of Forensic Psychiatry in the last two years are
independent initiatives, which give reason for hope.
These organizations are aiming to create appropri-
ate training programs for specialists in these areas,
which may help to solve various problems in the field
of legal medicine.

9 Research and dementia
Regulations concerning conducting the research
studies in Poland are included in Physician’s Profes-
sion Act.
The person which is supposed to be subjected to
medical experiment is being informed of objectives,
methods and conditions of carrying out an experi-
ment, expected healing or cognitive benefits, the risk
and possibilities of withdrawing from the participa-
tion in experiment in every stage (Art. 24. 1).
Carrying out medical experiment requires the
written consent of the examined person being sup-
posed to participate in it. If a person who cannot ex-
press his consent in a written form is to participate in
the experiment it is possible to express the consent
in an oral form in the presence of two witnesses what
should be conformed with witnesses’ signatures in
the research documentation. (Art. 25. 1.).
In the case of the entirely incapacitated person
for the participation of this person in healing ex-
periment a statutory representative of this person is
giving his consent. If such a person is able with the
insight to voice opinion in the matter of his/her par-
ticipation in healing experiment, moreover getting the
written assent of this person is necessary. In the case
of the person who has the full legal capacity but isn’t
able with the insight to voice opinion in the matter of
his participation in experiment, for the participation
of this person in healing experiment a guardianship
Court is giving its assent appropriate on account of the
residence of the subject carrying out an experiment.
In case the legal representative refuses to ac-
cept the participation of the sick person in healing
experiment, it is possible to turn to the guardianship
Court appropriate on account of the residence of the
subject carrying out an experiment for its consent.
With the application for giving the agreement on the
participation in medical experiment of this person, a
subject carrying out an experiment can appear to the
protective court appropriate on account of the resi-
dence of this subject. In cases requiring no delays and
on account of the imminent danger to life, getting the
assent isn’t necessary.
Practice of competence assessment in dementia: Poland
Medical experiments can be carried out exclu-
sively after a positive opinion on the project has been
expressed by the independent bioethical committee.
Persons having high moral authority and high spe-
cialist qualifications are to be appointed for the com-
position of the committee (Art. 29. 1). The Bioethical
Committee expresses the opinion about the medical
experiment, according to the resolution, and consid-
ers ethical criteria and the appropriateness and the
feasibility of the project.
References
Civil Code of April 29, 1964, 1994 Acts Register No. 84, pos.
386
Constitution of the Republic of Poland. Text passed on the 2nd
of April 1997 during The National Assembly. Acts Register
No. 78, pos. 483
Da˛browski S (1998) The capacity for genuine voluntary com-
mitment in the mentally ill: selected aspects. Post Psychiatr
Neurol 9 (Suppl 1): 11–18
Da˛browski S, Kiejna A, Rymaszewska J (2006) Legal report –
Poland. In: (Kallert TW and Torres-Gonzalez F, eds.) Leg-
islation on coercive mental health care in Europe. Legal
documents and comparative assessment of twelve Euro-
pean countries. Peter Lang, Frankfurt am Main, pp 219–
47
Flisiak J (2003) (Ed) The New Kosciuszko Foundation Diction-
ary. Universitas, Cracow
Kloszewska I, Kwiecińska E (1997) Motor vehicles driving by
people with mental disorders. Post Psychiatr Neurol 4:
457–60
Medical Advisory Branch of the DVLA (1996) At a glance guide
to the current medical standards of fitness to drive. DVLA,
Swansea
Mental Health Act (MHA) of August 19, 1994, Acts Register
1994, No. 111, pos. 535
Morasiewicz J (2000) The criteria for making decisions on be-
half of the incompetent patient in Polish medical law. Post
Psychiatr Neurol 9 (Suppl 1): 95–100
Radziwiłłowicz P, Gil K (2004) Dilemmas in forensic opinion-
ing in inheritance issues. Psychiatr Prakt Ogólnolek 2: 63–
66
Reifler BV (1995) Position statement on the role of psychiatrist
in assessing driving ability. Am J Psychiatry 152: 819
Safjan M (1998) Law and medicine. Instytut Wymiaru
Sprawiedliwości, Oficyna Naukowa, Warsaw
145
Chapter 21: A. Kiejna, J. Rymaszewska, and T. Hadryś

Physician’s Profession Act of December 5, 1996, Acts Register Highway Code, Act of June 20, 1997. Acts Register 2002, No. 25,
1997, No. 28, pos. 152 pos. 253
Family and Protective Code. Act of February 25, 1964

146
Chapter 22
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: PORTUGAL
Horácio Firmino, Pedro Silva Carvalho, and Joaquim Cerejeira
1 Introduction
Elderly people and namely those who are diagnosed
with dementia have similar rights and duties com-
pared with the others Portuguese citizens since their
juridical capacity is not limited by age. However, one
should attend to their reasoning status and ability of
understanding and deciding.
Portuguese Constitution (the fundamental law
to which other national laws are submitted) refers
particularly to elderly on article 72 in the following
terms:
(1) Elderly people have the right to economic se-
curity and home, familiar and social support
conditions respecting their personal autonomy
avoiding and surpassing isolation or social mar-
ginalization.
(2) Policy for the elderly consists of economic, social
and cultural measures in order to allow oppor-
tunities of personal fulfilment to elderly people,
through an active participation in community
life.
In relation to the rights of elderly people one should
also remember some aspects of the Portuguese law:
– descendents are obliged to give “food support”
to their ascendants, which means everything
that is needed for nourishment, lodging and
clothing;
– in case of incapacity of the elderly person, only
one appointed legal tutor is responsible for rep-
resentation and management of his/her person
and property;
– the landlord has restricted rights to cancel rental
agreement when the house renter is more than
65 years old;
– an elderly person can never be forced to live in a
nursing home or similar facility; should this oc-
cur against his/her will it will be considered an
act susceptible of criminal procedure;
– all facilities with profitable purpose must have
their internal rules placed in a location with
good visibility;
– it must be celebrated a legal agreement of lodg-
ing and caregiving between nursing home resi-
dent and the owner;
– all residents have right to intimacy and privacy.
2 Protection measures for elderly unable to
defend their rights
Elderly people whose mental faculties and physical
capacities are weakened by age or illness even show-
ing incapacity of expressing their will must be pro-
tected.
The present Civil Code defines two protective re-
gimes for people handling with physical and/or men-
tal incapacities and who need support to decision
making. They are Interdiction and Inabilitation.
This restriction of rights must be required to juri-
dical services (courts of law), usually by close relatives.
It should be object of assessment by a psychiatrist ( fo-
rensic psychiatric competence is not required) who,
after a judge questioning, makes an expert evaluation
with description of examination and conclusions. The
defensive lawyer (elderly representative), the repub-
lic prosecutor delegate (representative of the state)
Chapter 22: H. Firmino, P.S. Carvalho and J. Cerejeira
have the opportunity to formulate questions or state
against the act. Finally, the judge in possession of the
data of the assessment and considering all the raised
questions will pronounce for the capacity or incapac-
ity in the form of interdiction or inabilitation.
Interdiction respects to the person who is on
an usual incapacity condition of ruling him/herself or
his/her patrimony due to a psychiatric disorder, deaf-
ness or blindness (Article 138 of Civil Code). To apply
this measure it is necessary that a family member re-
quires the interdiction and that a curator is appoint-
ed by the family council. The curator becomes the
interdicted person’s representative and is responsible
of taking all the necessary measures respecting the
subject and patrimony administration. Interdiction
affects only a very small number of elders and usually
is applied to people with serious mental illness.
Inabilitation is applied to patients with psychi-
atric disorder, deafness or blindness which, although
with permanent character, is not so serious as to jus-
tify interdiction (Article 152 of Civil Code). Subjects
are assisted by a curator or a counsel (Article 153 of
Civil Code) to help them when incapable of expressing
a free informed consent, of taking care of themselves
or administrating their patrimony in consequence
of an illness, a disorder or any other weakness com-
promising their mental and physical capacities. It is
a temporary protection measure specially conceived
to avoid patrimony dilapidation.
Should some worsening or improvement occur
in the subject’s state any of these measures may be
modified, after request of the proper, of the family
and/or the curator.
3 Testamentary capacity
The decision of making a will and/or donation or sell-
ing patrimony follows the general Portuguese law. In
executing these acts, civil law notaries should evalu-
ate if testator has full understanding of the nature
and extent of the procedure.
In recent years notaries and lawyers are request-
ing the expertise of two psychiatrists (even without
148
legal obligation to do so) to assess this capacity to
people older than 65 years and/or having some type
of psychiatric disorder. After evaluation they declare
under compromise of honour if the person has ca-
pacity to have a reasonable awareness of the act.
This request is being made to prevent claims
from prejudiced relatives or beneficiaries of the will
(total or partially excluded from the acts) and cancel-
lation of the decisions by court appeal.
Although dementia is not specifically referred,
subject must have understanding of the nature of the
act that is being made. Assessment usually explores
orientation, concrete and abstract reasoning, calcu-
lation. Subject is asked to explain what are the objec-
tives of his presence in that place and finally to tell, by
his words, what he pretends to do and if he is aware of
the scope and extent of the decision.
4 Health program for elderly people
Government’s Program proposes integrated health
policies in the health care national plan which pro-
mote: development of actions closer to elderly citi-
zens and dependent people; fostering, with adequate
and reasonable territorial distribution, the possibility
of a more autonomous and better quality life; human-
ization of healthcare; potentiation of local resources;
adjustment to diversity that characterizes individual
aging and lost of functionality.
It intends to assure an integrated practice of
continuous healthcare, promoting the creation of
proximity care services in the community and the
indispensable articulation among health centres,
hospitals, continuous healthcare facilities, palliative
healthcare facilities and social support institutions
and services.
So:
By the terms of item (g) of the article 199 of the
Constitution, The Council of Ministers deliberates:
(1) Adopting the following fundamental principles
as guidelines for construction of healthcare to
elderly and dependent people:
 Practice of competence assessment in dementia: Portugal
1.1. Respect for the dignity of the elderly or depend-
ent human person, namely for the right to pri-
vacy, identity, information and non discrimina-
tion;
1.2. Incitement of citizenship, translated into the ca-
pacity to participate in relationship and collec-
tive life;
1.3. Participation of elderly or dependent people, or
their legal representative, in the elaboration of
the healthcare plan and reference to other avail-
able resources in the health service network;
1.4. Respect for the physical and moral integrity of
elderly or dependent people, assuring their in-
formed consent, or their legal representative, to
procedures or healthcare;
1.5. Family involvement in giving the main care, as a
privileged nucleus for the equilibrium and well-
being of elderly and dependent people;
1.6. Promotion, recovery or continuous mainte-
nance of autonomy, which consists of healthcare
suitable for improving autonomy and well-being
levels of the users;
1.7. Proximity of care, in order to maintain relational
and social support or promoting social insertion
of elderly or dependent people;
(2) Create, depending on the Minister of Health,
a Commission for the Development of Health-
care Services to Elderly and Dependent People,
which will be settled by joint dispatch of Minis-
ter of Health and Minister of Labour and Social
Security. The Commission will have the mission,
among other tasks, of proposing an action plan,
for future ministerial approval (Minister of State
and Finances, Minister of Health, Minister of La-
bour and Social Security), to predict progressive
creation of communitarian and proximity serv-
ices all over the country. This can be achieved
through partnerships promoted by primary
healthcare centres with local social solidarity in-
stitutions and autarchies, and articulation of pri-
mary healthcare centres, hospitals, continuous
or long term healthcare centres and palliative
and pain healthcare centres. A proposal should
be formulated for reviewing existent legisla-
tion in the matter of continuous and long term
healthcare.
5 Capacity for informed consent
In every medical procedure it is necessary to obtain
patient’s and/or family’s consent. Based on general
understandment of the Portuguese law one can as-
sume that the search for medical consultation im-
plies an authorization for an assessment consisting
in interrogation and physical exam. Complementary
diagnostic exams are, in the same way, considered
to be authorized except those which imply taking
contrast and/or chemical substances. These exams
should only be done after an explanation of the pro-
cedure and obtainance of a written consent.
Prescription and administration of medication,
although is does not require written consent, should
be also appropriately explained to patients.
All surgical treatments and/or with instrumental
use equally warrant a written consent, obtained after
detailed explanation of objectives, risks and benefits
of the procedure.
In clinical studies no procedure can be taken
without the essential written informed consent
signed by the patient who is going to participate in
the study.
The Portuguese law considers that if the patient
does not meet the necessary psychic conditions to
understand the study, indications, risks and/or ben-
efits, the signature can be replaced for a written au-
thorization of the family/care giver in the presence of
a third person not involved in the study nor the insti-
tution where it takes place. The same applies to cases
where the subject cannot read and/or sign.
6 Law and driving motorized vehicles
European directive (2000/56/CE) was transposed to
Decree-Law no. 45/2005 of February 23 which states
the following:
149
Chapter 22: H. Firmino, P.S. Carvalho and J. Cerejeira
– Validation of ability for driving depends on age;
– Shorter revalidation intervals may be justified
for medical or psychological reasons.
Moreover, Decree-Law no. 209/1998 of June 15, in Ar-
ticle 12 says:
Medical professionals who, in the course of their
clinical activity, treat drivers with illness or handicap,
chronic or progressive, or identify psychiatric disor-
ders which may affect the security of driving should
advise them to request a special inspection to the lo-
cal Health Authority and notify that authority with a
sustained and confidential clinical report.
Although age neither restricts nor imposes the
inability to drive, it is considered that, after 65 years
of age, the individual should be submitted to shorter
intervals assessments with evaluation of medical and
psychological capacities to drive. There is the pos-
sibility to impose limits to driving if it is recognized
some kind of disorder that may affect driver’s condi-
tion while the subject is referred to the local health
authority to be submitted to an assessment.
150
References
Carvalho PS, Pinho A (2006) Legislação e programas de apoio
para o idoso, in psicogeriatria. Ed. Horácio Firmino, Psiq-
uiatria Clínica, pp 201–13
Dias M, Carlos D (2003) Consentimento informado. Ed. For-
masau, Coimbra, pp 7–13; pp 21–25; pp 41–54
Oliveira G (1999) Temas de direito da medicina. Coimbra Edi-
tora
Oliveira G (2002) Direito da medicina – I. Coimbra Editora
Parente P, Queirós P, Firmino F, Gomes C (1998) Ética nos
Cuidados de Saúde. Ed. Formasau, Coimbra, pp 9–25; pp
43–53
Pereira A (2004) O consentimento informado na relação médi-
co-paciente: Estudos de direito civil. Coimbra Editora,
Coimbra
Programa Operacional de Saúde – Século XXI; http://www.
saudexxi.org/default.aspx
Portal do Ministério da Justiça; http://www.tribunaisnet.mj.pt/
Portal de Direito (verbo Júridico); http://www.verbojuridico.net
Portal do Ministério do Trabalho e da Solidariedade Social;
http://www.mts.gov.pt/index.php?corpo
Chapter 23
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: ROMANIA
Nicoleta Tătaru
The value of human being is not diminished by even profound forgetfulness
1 Introduction
By 2025, it is estimated that the number of persons
with dementia will increase to around 600.000 in
Romania (WHO). With the increasing prevalence of
dementia, issues of competency have become very
important. Issues of competence are fundamen-
tal to informed consent in research and the care
of demented people. Society is equally interested
in maintaining the autonomy and well-being of its
aging citizens as well as protecting them from risks
and dangers caused by their declining capacities.
Generally, Romania’s legislation is in keeping
with principles set out by the World Health Organisa-
tion, United Nations and so on, concerning the pro-
tection of people with mental illnesses. The legisla-
tion calls for adequate treatment and respect for the
human rights of the persons with mental disorders.
The most important principles derived from these
documents are: respecting the human dignity, rec-
ognizing equal civil rights with the others persons,
warranting the medical care and treatment and the
social, professional and familial rehabilitation. The
legal rights, financial and other personal interests of
patients with mental disorders must be protected.
According to the Madrid Declaration art.4, the
psychiatrist should discuss with the family and, when
appropriate, seek legal counsel in order to safeguard
the human dignity and the legal rights of the patient
when he/she is unable to exercise proper judgement
due to mental disorder. All psychiatrists face situa-
S. J. Post
tions where compulsive interventions are required
to safeguard the patients and/or those surrounding
him/her.
2 Mental capacity and competency
Some of our patients, particularly older people with
dementia, may not be able effectively to represent
their interests, manage their affairs or agree what they
are suggested. This is particularly problematic for
patients who are alone and where there is a conflict
between individual and family or carers’ interests.
2.1 Global competence
The definitions of competency have been moving
from a generalized concept of incompetence to a
more specific construct of incapacity to perform spe-
cific tasks needed to manage critical day-to-day func-
tions, such as the capacity to manage funds and the
capacity to make informed decisions about medical
treatment (Baker, 1998)
Competency is a legal term, defined as having suf-
ficient capacity, ability, or authority. Mental capacity
is a functional term and means an individual’s capac-
ity to make certain decisions and to perform certain
acts and ability to understand the nature and effects
of one’s acts (Art. 5 of the Romanian Mental Health Law
2002). Mental capacity is evaluated by a medico-legal
Chapter 23: N. Tătaru
expert after the clinical psychiatric and psychological
examination. This expert decides if a person is com-
petent or incompetent as a result of a mental disease,
injury or developmental disorder. The incompetent
person cannot understand, appreciate and decide on
specific issues of one’s daily life.
Non-competency
When the patient is non-competent or partially non-
competent the others should make the decisions on
his behalf. In this situation next approaches can be
taken: the patient’s best interest, a proxy decision
maker or an advance directive. We have to respect the
patient’s autonomy, and help the patient to preserve
his/her relationship giving information and respect-
ing the confidentiality.
Art 948 of Romanian Civil Code gives the defini-
tion of legal competence and its exigencies necessary
for a legal act: functional capacity, valid consent, mo-
tivation and nature of object.
2.2 Specific competence
Testamentary capacity such as the competence
to create a will, contractual capacity -enter into a
contract, donative capacity – make a gift, driving
capacity, consent to diagnosis, treatment and research,
advance directives, right to die, are often at issue in
litigation involving the elderly.
In Romania we do not have a standard assess-
ment to evaluate the status of a person’s financial
competence or other specific competencies. For glo-
bal competence assessment we use the same clinical
and psychological examination like for diagnosis of
mentally ill elderly patients. One of the important
goals of the neuropsychological evaluation of the el-
derly persons is to provide information regarding the
functional capabilities of geriatric patients in order to
decide upon their ability to live alone, to drive a car, to
manage their financial affairs, to have a valid consent
to care, treatment and research. Brief mental status
examinations are not adequate for diagnosis in most
cases. Comprehensive neuropsychological evalua-
152
tions for dementia and age- related cognitive decline
include tests or assessments of a range of multiple
cognitive domains, typically including memory, abili-
ties, problem solving, and executive functions.
2.2.1 Testamentary and financial capacity
Some people have cognitive impairment that may
reduce their capacity to manage their own financial
affairs and to make a will. The legal decision to limit
a person’s right to manage his or her own finances
depends, in part, on an assessment of financial com-
petence. Tribunals and courts may receive informa-
tion from different sources ( family members, general
practitioner, psychologist, social worker, and psy-
chiatrist) and have to use this information in order
to make guardianship decisions. Kaplan and Sadock
(1991) underlined the psychological abilities neces-
sary to evaluate the testamentary competence. The
patient must know: the nature of their property that
they are making a will and who are their natural ben-
eficiaries (Webber et al., 2002).
2.2.2 Driving competence
There is an obligatory health check every fifth year for
all persons. A health check every year beginning with
the age of 65 is required for the elderly to keep their
regular driving licences. In Romania the doctors have
to inform the police monthly about all new mentally
ill cases, choosing between to protect the public from
persons with mental disorders including dementia,
when in traffic, and the ethical obligation to respect
the confidentiality.
2.2.3 Consent to diagnosis, treatment and
research
The principle of autonomy emphasizes the importance
of patients having the right to decide on which
treatment to choose and the right to refuse treatment
 Practice of competence assessment in dementia: Romania
and research. The patient’s valid consent means that
he/she has to be: informed, competent and not-coerced.
Older adults with dementia may have diminished
capacity to make medical treatment decisions and
may not be legally competent to engage in informed
consent and surrogate consent is required. The
professionals continually face the question of whether
a person with dementia is competent to refuse or
consent to nursing intervention and research.
In Romania every medical intervention requires
the consent of the patient who has to sign a consent
form, apart from emergency cases and if the patients
are incapable to have a valid consent due to their
mental disorders. For these patients their legal
representatives or a medical commission have to sign
the consent. Consent to treatment is linked to human
dignity and personal liberty. The patients must have
the right to refuse the treatment when they believe
that their quality of life would be compromised by
continued treatment and they must have “the right
to die” with dignity. The patients are entitled to know
or not to know the diagnosis. We have to inform them
carefully about their diagnosis and give full informa-
tion to the relatives. We have to be sure that the pa-
tients understand the benefits, risks and alternatives
of the treatment. In the context of incurable illness
who decides “not to treat”? In Romania “passive eu-
thanasia” is illegal like in most European countries.
Only renunciation of maximal therapy is accepted.
In the mean, the rules of the medical treatment also
apply to medical research. Elderly persons with or
without dementia must be granted equal opportu-
nity for participation in research as all other persons.
Involuntary psychiatric treatment is permitted by
law, if a person suffers mental disorders including
dementia that is dangerous to him/her or others.
(The Romanian Mental Health Law, 2002)
2.2.4 Advance directives
An advance directive (advance refusal or living will) is
a form of planning for healthcare in advance of inca-
pacity, by which people with dementia can exercise
their right to self-determination. Thus for people with
dementia, advance directives could be used to in-
clude other general wishes (to attend a day care cen-
tre, to take part in research, living arrangements etc).
For an advance directive to be valid, the person must
have capacity. Advance directives are an important
means of ensuring that a person can consent to or
refuse medical treatment or care, when they no long-
er have the capacity to do so. Advance directives for
medical care have been widely advocated as a means
of extending the autonomy of patients to situations
when they are incompetent (Fazel et al., 1999).
In Romania we have no instrument for the as-
sessment of competency to complete advance direc-
tives that seems to be reliable, valid, and ready to be
used in clinical practice.
3 Legal assistance and representation
3.1 Legal guardianship
If a person lacks legal capacity the State (the Court,
after medical expertise) may deem him as non-
competent or partial non-competent and decides to
lay him under an interdiction. In Romania there are
partial guardianship and total guardianship for partial
non-competent and total non-competent patients.
Art. 142 of Romanian Familial Code gives the
definition and rules for applying the legal total
guardianship (“Tutela”). The patient is examined by
a legal medical commission who diagnoses a mental
illness or disability and who evaluates the legal com-
petence. This commission decides if the patient is
non-competent, or partial non-competent, if he/she
lacks legal capacity to perform certain daily living
acts. Then the Court lays the non-competent person
under a total or partial interdiction, when legal ca-
pacity can only be restricted. The City Hall as local
administrative authority decides the legal guardian-
ship and the person who will be the guardian of non-
competent patient to protect his/her interests. The
definition and rules for applying the partial guardi-
anship is written in Art. 146 of Romanian Familial
153
Chapter 23: N. Tătaru
Code. The partial guardianship (“Curatela”) can be
established pre-guardianship, by the setting up of
the guardianship, intraguardianship and interguardi-
anship or postguarduanship when the guardian is
changed (he is ill, he is dead or he is unwilling).
3.2 Enduring power of attorney
The power of attorney covers the case of temporary
or partial incapability being an alternative to legal
guardianship, avoiding the Court proceeding. The
patient should understand that the attorney will be
able to assume complete authority over the donor’s
affairs and should understand the effect of this act.
In Romania ensuring the power of attorney does not
require the assessment of legal competence.
4 Conclusions
The practitioner involved in competency and capac-
ity assessment of the older adult faces two major
problems: lack of agreement on conceptual models
to organize the assessment and changing legal con-
text in which the competency assessment occurs.
Ethical dilemmas never allow us simply to suspend
judgement and do noting’ (Catherine Oppenheimer,
1995). There is an absence of consensus on conceptu-
154
al definitions and assessment techniques for compe-
tency in elderly adults. Ethical problem for all forms
of dementia is the decision about the right time to
transfer the patient to a nursing centre and to reduce
the therapeutic program using expensive drugs.
References
Baker RR (1998) A practice guideline for assessment of com-
petency and capacity of the older adult. Professional Psy-
chology: Research and Practice in the Public Domain 29(2):
149–54
Fazel S, Hope T, Jacoby R (1999) Assessment of competence
to complete advance directives: validation of a patient
centred approach. BMJ 318: 493–97
Kaplan HI, Sadock BJ (1991) Geriatric psychiatry. In: Synopsis
of psychiatry behavioral science. Clinical psychiatry, 6th
edn., pp 820–35
Kaplan HI, Sadock BJ (1993): Comprehensive textbook of
psychiatry, 8th edn., pp 3797–3806
Mental Health Law: Monitorul oficial al Romaniei, XIV, No. 589,
8 August 2002
Oppenheimer C (1997) Ethics and the psychiatry of old age,
In: (Jacoby R and Oppenheimer C, eds.) Psychiatry of the
elderly, 2nd edn., chap. 38, pp 709–35. Oxford University
Press, Oxford
Post SG (1995) The moral challenge of Alzheimer’s disease.
John Hopkins University Press, Baltimore
Webber LS, Reeve RA, Kershaw MM, Charlton JL (2002)
Assessing financial competence. Psychiatry Psychol Law
9(2): 248–56
Chapter 24
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SPAIN
Fernando Marquez and Raimundo Mateos
1 Introduction
In Spain the issues dealing with competence and in-
competence proceedings are essentially regulated
by the Código Civil (Spanish Civil Code) and the Ley
de Enjuiciamiento Civil (Spanish Rules of Civil Law
Procedure), as well as by the Código Penal (Spanish
Penal Code), regarding matters pertaining to the
special protection of the incompetent as a victim.
As to Informed Consent, whether in the case of di-
agnostic tests and interventions or their involvement
in research or teaching projects, the basic regula-
tion (pertaining to patients) is the Ley de Autonomía
del paciente y del derecho al acceso a la información
y documentación clínica (2000) (Spanish Law on the
Autonomy of Patients and their Right to Access to
Information and Clinical Documentation), which
includes the contents of the Convention on Human
Rights and Biomedicine (Oviedo, 1997), which be-
came mandatory in Spain by parliamentary agree-
ment in 2000. We should not forget, however, that in
geriatric psychiatry it is not uncommon to find situa-
tions in which legal regulations are lacking, however,
a decision still has to be made; in this situation the
clinician has to draw in bioethics (Calcedo-Barba et
al., 2002).
The considerations and references made in each
of the paragraphs below are applicable to persons
who have been diagnosed with dementia. Its exten-
sion, limits, persistence and degree of impairment
must be adapted to their level of cognitive impair-
ment arising of the typology of the dementia and its
stage, as analyzed in different publications of legal
psychiatry used in this field (Arechederra-Aranzadi,
2004; Cabrera and Fuertes, 1997; Carrasco-Gómez
and Maza-Martín, 2005; Cortés-Domínguez and
Moreno, 2001; Fernández-González, 2001; Santander,
2000; Simón-Lorda, 2000).
Spain is one of the most aged countries in the
world: currently the persons older than 65 and 75
account for 17% and 8% of population respectively
and projections for 2050 increase such percentages
to 31% and 17%, respectively. It is for this reason that
all matters on legal, social, ethical and health issues
connected with aging constitute a subject worthy of
study and analysis in all domains of society. Aware-
ness about dementia in professional and media cir-
cles has spectacularly increased over the last decade
and a case in point is the publications on the subject
both in scientific journals and for the public at large.
The assessment of competence and other important
legal issues for patients suffering from dementia and
their relatives has been specifically tackled in two re-
cent consensus documents, one of them developed
by the Spanish Society of Psychiatry and the Spanish
Society of Psychogeriatrics (Castellano and Villanue-
va, 2005) and the other by the Spanish Society of Neu-
rology (Boada and Robles, 2005). Perhaps initiatives
like these may in the future bring about a professional
consensus on protocol procedures for the assessment
of competence in dementia.
2 Incompetence versus competence
The first issue that must be settled is the criterion of
legal capacity in reference to a person (human being)
so that they may be deemed in full exercise of their
duties and rights. This capacity is linked to their le-
gal personality. Every human being is, in principle,
Chapter 24: F. Marquez and R. Mateos
endowed with it. Under certain conditions, however,
its exercise may be subject to limitations to a greater
or lesser extent. This legal capacity, as defined in the
Código Civil Español, arises at the moment of birth
and expires with death. Legal capacity is relevantly
expressed as the capability to “act”, “do”, exercise and
perform rights and duties; govern oneself in accord-
ance with the principle of personal autonomy; and
ability to administer and manage one’s own proper-
ties. Such full exercise of one’s rights and duties cor-
responds to persons of legal age and it is limited, al-
beit strongly protected, for minors.
The exercise of legal capacity (which in the
medico-legal system is called competence) may be
affected or be partially or fully lost either temporally
or permanently so that the legally incompetent be
placed under guardianship or curatorship, delegating
on a third person by a decision of the court in a judge-
ment on completion of the legal incompetence pro-
ceeding pursuant to sections 756ff of the Ley 1/2000
(de 7 de enero) de Enjuiciamiento Civil (Law 1/2000 of
January 7 of Civil Code Procedure).
Grounds for incompetence include “illnesses or
permanent disabilities whether physical or psychic
that prevent the person from managing their own af-
fairs”. Anyone may commence an incompetence pro-
ceeding by informing the public prosecutor’s office or
alternatively the very public prosecutor by their own
initiative, the alleged incompetent or first or second
degree relatives; furthermore, the authorities and
public officers who, by reason of their office, should
know of any ground for incompetence must inform
the public prosecutor’s office.
The court decision (judgement) shall determine
both the extent and the limits of the incompetence
or of the acts of self-management of property in the
event of a declaration of prodigality as well as the
appointment of a guardian or curator who is respon-
sible for the care and management of the incompe-
tent. In both cases, when the person is pronounced
incompetent or prodigal, a new procedure may be
commenced that restores competence when condi-
tions apply. The Court, upon learning of the existence
of grounds for incompetence, may of its own motion
156
take the measures it deems suitable for the adequate
protection of the alleged incompetent, or their estate
and will inform the public prosecutor’s office.
Medical Opinion: The medical opinion on the
existence of grounds for incompetence as regards
the person subject to the incompetence proceeding
is construed as an indispensable requirement and
shall follow the submission of forensic psychiatric ev-
idence which shall include the existence of grounds
for incompetence, if any, their extension and degree,
whether it is reversible or not and how it affects the
person’s ability to manage their own affairs and es-
tate.
The incompetent as a victim is contemplated in
the Código Penal, which envisages protection and de-
fense measures for persons suffering for special des-
titution before the aggressions and abuse of others,
usually with the aggravation of the penalties when
the victim is an incompetent.
3 Protection of property
Prodigality: in the event that a person indulges in
irrational expenses of an amount such that they en-
danger that person’s estate and that of those who by
association or relation to that person are entitled to
claim them. The grounds shall be a mental disorder
that seriously affects the person’s ability to manage
their estate (manic, delirious and serious impulse
dyscontrol symptoms would be typical examples of
clinical events that may manifest in the course of de-
mentia).
The protection measure in this case would be
the curatorship, which entails a partial restriction of
the capacity to exercise civil rights whose effects are
mainly restricted to assets with a view to ensure its
validity and efficiency in time while assets are pro-
tected. The same persons and institutions that may
commence an incompetence proceeding may also
proceed in the declaration of prodigality.
The applicable legal norm is Ley 41/2003 (de 18 de
noviembre) sobre Protección Patrimonial de las perso-
nas con discapacidad (Law 41/2003 of November the
This page intentionally blank

18th on Asset Protection of handicapped persons),
including those suffering from serious cognitive im-
pairments compatible with dementia. This law envis-
ages the following:
– The creation of a protected state that will be ex-
clusively used for the care, protection and well
being of the disabled person whether it is man-
aged by the same person or by tutors, curators or
guardians or by non-profit, specialized special-
ized institutions, all of which shall be subject to
the supervision criteria of the administrators of
the said estate and in any case subject to insti-
tutional suspension by the Public Prosecutors’
Office.
– Self-guardianship: the possibility, contemplated
by law, in virtue of which a person with capacity
to act may take the steps they deem suitable as
a precaution against their own future incompe-
tence. This may be especially important in cases
of brain degenerative diseases.
4 Capacity to enter a contract and make a will
before a notary
It is presumed and accepted as full, unless there is
proof to the contrary. Whether in this case or in a pri-
vate contract it is necessary to prove that as a conse-
quence of a psychiatric disorder the person was not
competent (knowledgeable of the act, of its conse-
quences and their freedom) to enter such document,
will or contract at the moment of executing it. This is
much more easily proven in the event of a persistent
and progressive disorder as opposed to a transitory,
temporal one (as it is the case of the first stages of de-
mentia). Whatever the case, a previous declaration of
incompetence is not required to render the contract
void if psychic incompetence for entering such con-
tract at the moment of formalizing is proven.
Practice of competence assessment in dementia: Spain
5 Informed consent (for diagnosis/treatment/
research/teaching)
Informed consent must be an interactive process that
entails a level information that is sufficient enough
in quantity (adapted to the cultural, education and
intelligence level and the languages of common use)
and comprehensible enough so that the person who
must give consent can assess what is being proposed
to them (diagnostic test or therapeutic intervention)
and the consequences (those which will occur, those
which might occur and those foreseeable because of
the person’s specific health condition and character-
istics as well as the consequences it might have on
relevant areas of that person’s life and their quality of
life).
When the test poses a life risk or one with serious
consequences, consent shall be given in writing and
be signed by the consenting person. It shall always
be reversible. At the very least, it shall be verbal and
must be included in the person’s history. A sufficient
interval of time is advisable between the informing
and the consenting so that the person may meditate
on it, consult other persons, who may or may not be
relatives, request clarification or further information
to the doctor providing the information. Consent is
given for a specific test or intervention and must be
given for each of them.
In research procedures, rigor must be absolute;
especially if the consenting person shall not derive
any direct benefit of the results thereof and under no
circumstance shall the procedure represent a serious
risk for the participating patient.
Voluntary admission to a hospital by reason
of psychic disorder is envisaged in section 763 of the
Ley de Enjuiciamiento Civil. Involuntary admission
to a psychiatric ward whether in a general hospital
(where most cases occur) or in a psychiatric hospi-
tal requires a court authorization which shall be
obtained prior to such admission, except in cases
of emergency which force to take such measure im-
mediately. In such cases, the person responsible for
admission to hospital shall report the admission to
the relevant court within 24 hours and the court shall
157
Chapter 24: F. Marquez and R. Mateos
have 72 hours to confirm or not the admission. Be-
fore granting authorization or confirming admission
to hospital, the relevant court shall hear the affected
person, the public prosecutor’s office and any other
person the courts deems relevant. The court shall
furthermore directly examine the person subject to
the procedure and hear the expert opinion of a doc-
tor appointed by the same court.
The admission to hospital order issued by the
court shall also include the obligation by the doctors
treating the person of informing the court at least
every six months on the need to maintain the meas-
ure except when the court should order more fre-
quent or complementary reports. Notwithstanding
this, when doctors treating the involuntary patient
deem suitable to discharge the patient, they may do
so by immediately informing the court. Doctors may
not discharge the patient without a prior authoriza-
tion by the court when this measure has been taken
as an alternative to imprisonment in pursuance of
the Código Penal.
A voluntary admission to a psychiatric ward,
without intervention of a court, may become an in-
voluntary admission if doctors deem it necessary and
commence the relevant proceedings to obtain court
authorization.
Outside the scope of mental illnesses, there is
the possibility of involuntary internment for any pa-
tient when there is a public health risk. In such a case,
a court shall be informed of the internment within 24
hours (Ley Orgánica 3/1986 de Medidas de Defensa
de la Salud Pública; included in Ley 41/2002 de 14 de
noviembre, which regulates Patient’s Autonomy and
the rights and duties as regards clinical information
and documentation.)
6 Advance directives
Formerly known in Spain as living will and more re-
cently as “voluntades anticipadas”, advance directives
are concerned with the extension of the principle of
autonomy to the moment in which the affected per-
sons may not decide for themselves. A representative
158
may also be appointed as interlocutor with the doc-
tors when the patients cannot decide for themselves.
Advance directives are only valid for the pro-
cedure and exact case they describe, provided they
do not infringe the legal framework in force. They
are reversible, must be entered in an official record
office and must be periodically confirmed (periods
will be determined in a Regulation currently been
drafted).
There shall be at least one such record office with
a national scope ( for the whole of Spain) although it
will be kept in collaboration with those autonomous
communities that decide to put in place their own.
Whether in the case of informed consent or ad-
vance directives in patients with mental disorders
care and precaution in the procedures shall be up-
permost.
7 Mentally disordered offenders
In cases of mentally disturbed persons who have
committed crimes it shall be at the discretion of the
court to impose measures restraining liberty (admis-
sion to a suitable health and/or education institu-
tion) or other types of restrictions (injunctions, revo-
cation of the license to carry firearms or of the driving
license and professional disqualifications) which may
include undergoing outpatient treatment at medical
or social/health centers for up to 5 years.
8 Driving motorized vehicles and possession
of firearms
Generally speaking, the professionals’ duty to report
is confined to crimes and situations that have the
appearance of criminality as defined in the Ley de
Enjuiciamiento Criminal (Spanish Code of Criminal
Procedure). Otherwise, consensus documents advise
professionals to act prudently before this situation
and recommend the patient (and their relatives) not
to drive on the basis of the risks posed by the disorder
or the side effects of medication.

Certified and authorized offices conducting the
mandatory competence and aptitude tests required
for obtaining a driving license operate in accordance
with the following criteria.
Generally speaking, the renewal of a driving li-
cense and the corresponding evaluation occurs from
the moment of legal age a) up to the age of 45, every
ten years; b) between the ages of 45 and 70, every 5
years; c) older than 70, every 2 years. There are re-
strictions to these periods in the case of some illness-
es. Thus, for those suffering from monocular vision
impairment, diabetes or cardiopathy renewal periods
are 5, 4 and one year respectively.
In the case of serious mental disorders which re-
quire psychopharmacologic treatment:
(a) When it pertains professional licenses, heavy-
duty vehicles or public transport vehicles, the
general rule is to deny them.
(b) As to private cars, the person making the assess-
ment in each case shall determine which renew-
al period should be applicable (it could be one
year or even 6 months) as well as the speed limit
applicable to that person.
Practice of competence assessment in dementia: Spain
References
Arechederra-Aranzadi JJ (2004) Psiquiatría y ley. Tres Cantos,
You & Us, SD
Boada M, Robles A (2005) Análisis y reflexiones sobre la ca-
pacidad para tomar decisiones durante la evolución de una
demencia: “Documento Sitges”. Editorial Glosa, Barcelona
Cabrera J, Fuertes JC (1997) Psiquiatría y derecho. Cauce Edi-
torial SL, Madrid
Calcedo-Barba A, Gil-Gregorio P, Castelli-Candia P (2002) Legal
aspects in dementia. Curr Opin Psychiatry 15(6): 577–81
Carrasco-Gómez JJ, Maza-Martín JM (2005) Manual de psi-
quiatría legal y forense, 3rd edn. La Ley-Actualidad SA, Las
Rozas
Castellano M, Villanueva E (2005) Aspectos legales y éticos.
In: Sociedad Española de Psiquiatría, Sociedad Española
de Psicogeriatría (eds), 2nd edn., SANED, Barcelona, pp
91–117
Cortés-Domínguez V, Moreno V (2001) La nueva ley de enjuic-
iamiento civil. Editorial Tecnos, Madrid
Fernández-González B (2001) La incapacitación de los an-
cianos en la nueva Ley de Enjuiciamiento Civil. Actualidad
Civil 4: 1647–58
Santander F (2000) Ética y praxis psiquiátrica. Asociación Es-
pañola de Neuropsiquiatría, Madrid
Simón-Lorda P (2000) El consentimiento informado, historia,
teoría y práctic. Editorial Triacastela, San Sebastián
159
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Chapter 25
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SWEDEN
Karin Sparring Björkstén
The Swedish word “rättshandlingsförmåga” or legal
competence refers to an individual person’s law-
ful right to make agreements and decisions about
his or her property and life. All adults in Sweden are
considered to have legal competence unless proven
otherwise. During the past decades, the Swedish so-
ciety has moved towards more respect for individu-
als, albeit demented, mentally ill or retarded. Respect
for everyone’s autonomy is emphasized in social and
medical law. The law states clearly that as little coer-
cion as possible should be used.
Until 1989, legal guardians were appointed to
adults with mental disorders or mental retardation.
Those adults lost the right to decide about their own
financial and legal affairs, as well as the right to vote
and to get married without special permission.
After abandoning legal guardians, there are three
possibilities for those who need assistance in manag-
ing their economy and private lives.
1 Power of attorney
Anyone with legal competence is allowed to sign a
power of attorney for someone else to take care of
his or her business. This is common among family
members and close friends. The power of attorney is
not valid if the patient does not understand the na-
ture of it. This excludes many patients with dementia
from this possibility. There is also confusion about
the validity of the power of attorney: Even if the pa-
tient understood what (s)he was doing when sign-
ing it, is it still valid when dementia has progressed?
Some banks refuse to accept a power of attorney after
calling patients who neither remembers nor under-
stands. On the other hand, it does happen that de-
mented persons are deceived with the help of old or
new powers of attorney.
2 God man (“Good man” or “Mentor”)
If the patient’s business cannot be managed within
the family, the court can appoint a “god man” (“good
man” or “mentor”) (Children and Parents Code,
1949a). About 60,000 people, many of whom are de-
mented, have a “good man”. Applying for a “good man”
is a routine procedure in elderly care. A social inves-
tigation, usually made by a social worker is needed.
If the patient understands the idea of getting a “good
man”, (s)he must sign that (s)he accepts this. If the
patient does not understand, a doctor’s certificate is
needed. There is a simple form to be filled out but no
formal requirements how the patient should be as-
sessed. Any physician licensed to practise medicine
in Sweden can write this certificate.
Patients, doctors and relatives usually do not
need to appear in court. Any adult, man or woman,
can be a “good man” and relatives often volunteer.
The “good man” should make sure that the eco-
nomy is in good order and that the patient gets the
social support needed. The “good man” has the legal
right to apply for social benefits, and to deal with au-
thorities on behalf of the patient, but is not allowed
to do anything against the patients expressed wish.
The patient retains all legal rights, whereas the “good
man” has several restrictions. A “good man” may not
provide adequate protection if the patient is active
and lacks judgement. On the other hand, it does hap-
pen that “good men” deceive patients, since there is
Chapter 25: K. Sparring Björkstén
little control of what they actually are doing. Tragic
cases have been reported in the media.
3 Förvaltare (“Administrator”)
If a “good man” cannot provide the patient enough
protection, the court can appoint a “förvaltare”, an
administrator (Children and Parents Code, 1949b).
This is as close as we come to a legal guardianship.
The patient loses a number of rights, such as signing
binding legal arrangements or economic agreements,
but keeps the right to vote and to get married – and
to run for office. About 6000 people have administra-
tors.
Since a patient who has a “good man” still has le-
gal competence, (s)he can give away money or sell the
house for a fraction of its value or be used by greedy
persons. An elderly person who cannot resist an off-
spring begging for money may have to be protected
by an administrator.
An administrator can be appointed by the court
if it is not otherwise possible to limit the patient from
his/her activities, or others’ abuse of the patient’s lack
of judgement. It is hard to obtain court approval of an
administrator. Other solutions have to be excluded or
previously tried and carefully documented. A doctors’
certificate is always required, and must be highly mo-
tivated and carefully written. Any doctor licensed to
practise in Sweden can write this certificate, although
it is not considered proper to leave this task to junior
doctors. There is usually a long delay before a patient
gets an administrator. Unfortunately, many persons
make considerable losses because of this delay.
4 Legal competence from a medical
point of view
There are no generally accepted ways to determine
who has or has not legal competence. Doctors usually
regard it as a legal problem, whereas lawyers consider
it to be a medical issue. Doctors and lawyers seldom
meet, and generally do not speak in the same termi-
162
nology. Medical universities teach very little law, and
law schools teach very little medicine.
Many doctors do not know what to do with ques-
tions regarding their patients’ legal competence. Most
medical departments dealing with dementia would do
a regular dementia work-up. If available, a neuropsy-
chological test by a psychologist would be done. How-
ever, neuropsychologists are scarce. Consequently, a
demented patient cared for in a family practise may
sometimes never be tested by a neuropsychologist.
5 Will
The law states that “A will that has been written un-
der the influence of a mental disorder is not valid”
(Inheritence Code, 1958a) and that “If someone has
forced testator to write his will or abused his lack of
judgement, weakness or dependence, the will is not
valid” (Inheritence Code, 1958b). Wills are usually
written without any medical assessment.
If inheritors want to question a will, they must
take the issue to court. Anything can be used as evi-
dence in the trial. Medical staff that has cared for the
patient can be called as witnesses. Other experts can
be asked by the parties to review patient records and
other evidence. This is often difficult, since patients
seldom have been assessed with regard to legal com-
petence. In a civil action, like questioning of a will,
the parties and not the court have to find expert wit-
nesses. There are few doctors who accept to be expert
witnesses.
6 Agreements made under the influence of
mental disorder
It is not unusual that patients with dementia or other
mental disorders do business that they would not
have done if they had been healthy. There are laws
that protect the patients. Unfortunately, those laws
are not well known within the medical community.
“An agreement made under the influence of
mental disorder is not valid” (Law concerning agree-
 Practice of competence assessment in dementia: Sweden
ments under influence of a mental disturbance 1924).
If a patient has bought or sold something under the
influence of a mental disorder, any doctor can write
a simple certificate and refer to the above law. The
family should be instructed to bring the certificate to
the shop and explain the problem. In case of major
issues, like selling a house, the family should be in-
structed to get in touch with a lawyer.
7 Impediments to marriage
Impediments to marriage according to Swedish law
are (1) age less than 18 years of age, (2) being closely
related or (3) already being married. Having a “good
man” or “administrator” is not an impediment to
marriage. Actually, there are no explicit requirements
in the law about the parties actually understanding
the significance of marriage. The Supreme Court has
therefore tried a case where a demented person was
married to a non-demented person (Supreme Court
1994: 23). It was found that the intention of the law
is that the parties must understand what they are
doing. It is the person who officiates at the marriage
that is responsible to check this.
8 Elections
It is not possible to deny Swedish adults the right to
vote. Anyone who has the right to vote also has the
right to run for office.
9 Conclusions
In summary, all Swedish adults are considered com-
petent unless proven otherwise, and the law is of
little help when assessing legal competence. There
are laws that provide some protection to persons
with dementia and other mental disorders. There
is a great need for guidelines and knowledge in the
medical care system to assess legal competence. Law
is not well known to health care professionals and
medicine is not well known to the legal professionals.
Legal professionals dealing with demented subjects
need to learn more about medical aspects. The life
span and situation for people with dementia is totally
different today than a few decades ago. Revision of
the Swedish law concerning the rights and the pro-
tection of people with dementia is needed.
References
Swedish laws are found on the website of the Swedish Parlia-
ment; http://www.riksdagen.se/
Children and Parents Code a (Föräldrabalken 1949: 381 11 kap
4 §)
Children and Parents Code b (Föräldrabalken 1949: 381 11 kap
7§)
Inheritence Code a (Ärvdabalken 1958: 637 13 Kap 2 §)
Inheritence Code b (Ärvdabalken 1958: 637 13 Kap 3 §)
Law concerning agreements under influence of a mental dis-
turbance (Lag om verkan av avtal, som slutits under påver-
kan av en psykisk störning 1924: 323)
Supreme Court (Precedent) (Högsta Domstolen 1994: 23)
163
Chapter 26
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: SWITZERLAND
Marc Graf and Eva Krebs-Roubicek
According to estimates of the Swiss Alzheimer As-
sociation, about 96,000 persons suffer from different
forms of dementia in Switzerland. We expect 21,000
new cases per year, every year about 18,000 persons
suffering from dementia die. One third of patients
are correctly diagnosed, one third suffers presumably
from a cognitive disorder, but for one third of the pa-
tients the cognitive disorder has not been recognised.
More than half of the persons suffering from demen-
tia live at home and about 40% in an institution. We
estimate, that 300,000 relatives are directly involved.
Only 25% of persons suffering from dementia receive
specific drug treatment, and only 20% receive specific
non-drug treatment.
In Switzerland the diagnosis of dementia is often
carried out in memory clinics, in multi-disciplinary
working collaboration of neuropsychology, psychia-
try of the elderly, geriatric medicine, neurology, neu-
roradiology, social workers and nursing staff.
In order to improve the diagnosis and the treat-
ment of dementia the following principles of assess-
ment have to be established:
– Recognising cognitive deficits, describe premor-
bid functional ability and behaviour.
– Record past and present general medical status
and medication.
– Objective assessment, especially useful in cases
of mild to moderate dementia.
– Establish specific patterns of cognitive deficits.
– Differential diagnosis of depression and demen-
tia.
– Formal assessment of the impact on caregivers
living with and looking after a person with de-
mentia.
– Recording response to different interventions
(pharmacotherapy, sociotherapy, psychothera-
py).
To assess strengths and weaknesses of evaluation
relative to a standardised scoring system a detailed
research program has to be established in order to in-
troduce screening and rating scales, specific tests, be-
havioural checklists, interview-based questionnaires
and detailed measures of cognition, ADL and general
functions.
The law relating to the elderly demented indi-
vidual and to those responsible for their care varies
widely from country to country. In Switzerland feder-
al civil law is applied quite different in the 24 cantons
in specific cantonal laws and regulations. As in most
modern countries, self-determination of any person
from birth to death is guaranteed by the constitution.
As a consequence, any medical act, such as an opera-
tion but also the administration of drugs is, as a mat-
ter of principle, unlawful, if not permitted by
(a) the consent of the patient,
(b) the consent of his (legal) representative in pa-
tients habitually incompetent and
(c) good medical practice and commensurability in
momentarily incompetent patients (emergency
cases).
This would literally imply that, in any demented per-
sons, who are not competent to consent, a legal rep-
resentative ( for this affair) should be imposed (“Ver-
tretungsbeistandschaft”, Art. 392 Paragraph 1 Swiss
civil code). For persons, who are, due to mental disor-
der or dementia, not capable to manage their affairs,
Chapter 26: M. Graf and E. Krebs-Roubicek
who are in need of continuous protection and care or
peril the safety of others, legal guardianship has to be
established.
Unfortunately Swiss authorities are very con-
servative ordering such measures if not requested
by the respective person. (Side note: How should an
incompetent person dependably ask for legal guardi-
anship?; mostly the significant others have to ask for
help!) This reluctant attitude is partly a backlash from
widespread abusive practices up to the seventies, as,
for example, to impose systematically guardianship
for children from ethnic minorities, sterilizing men-
tally disabled women surgically and setting mentally
disabled men under anti-androgenic medication.
As a result, Swiss physicians, especially when deal-
ing with mentally ill and/or demented patients, hover
between legal preconditions and daily practice. The
daily practice formed the following main principles of
common law in dealing with demented patients:
– A diagnosis of dementia should not automati-
cally mean that the patient’s views are no longer
to be considered. However, only competent per-
sons are able to make voluntary and informed
choices that are ethically and legally valid.
– Individuals capable of making their own deci-
sions should always be allowed to do so, in keep-
ing with the ethical principles of respect for
autonomy and justice. For those not capable of
making their own valid choices, the family and
professionals’ responsibility is one of protection.
– Assessing competence is never easy and patients
may be competent to make their own decisions.
In general, patient’s views should be paramount,
unless others will be adversely affected or there
is concerns about safety (e.g., driving).
– Aspects to be considered when making a deci-
sion about competence should include the abil-
ity to:
• Communicate and maintain a stable choice
• Understand (and remember) relevant in-
formation in order to make an informed
choice
• Grasp the significance of the situation
166
• Manipulate information rationally to gain
logical and consistent conclusion
– An independent patient’s advocate may help
decision making. Alternatively reference can be
made to a committee set up to consider legal is-
sues. Neither should merely be used as a way of
passing on to others the responsibility for diffi-
cult decisions.
– Decision-making ability may change over time,
for example as dementia progresses or delirium
resolves. Re-evaluation of capacity may be re-
quired at regular intervals, to determine wheth-
er competence has been lost or regained.
If the patient is considered incompetent, then some-
one else must make the decisions for him. According
to the above mentioned practice, this may be their
next relative, their professional adviser, someone le-
gally appointed by the patient, while he was still men-
tally capable or some legal advisor.
The following points should be considered dur-
ing the process of decisions making:
– The primary care physician is ultimately respon-
sible for any medical decisions in the best inter-
est of the patient and will be accepted by a re-
sponsible body of medical opinion
– Judging capacity for consent will, at least, be
greatly influenced by medical opinion leading to
diagnosis. The physician involved should gather
information from all available sources as well as
carefully assessing the patient, who should be
helped to understand and contribute to the de-
cision making
– Close family and friends should be consulted be-
fore a final decision has been made. They may be
able to provide information about what the de-
mented patient would have wanted, if he or she
were able to express their opinion openly
– A second opinion is always wanted if there is an
uncertainty
An expert commission has conceptualized during the
last 15 years a draft for a new law concerning guardi-
 Practice of competence assessment in dementia: Switzerland
anship which the federal council will decide to accept
in the next two years. Consultation of stakeholders
like political parties but also organisations of patients
and relatives as well as the association of Swiss physi-
cians proved general agreement. The most important
changes concerning the topic of demented persons
will be:
– In case of complete or partial incompetence, the
following persons, in this order, have to act (they
are obliged to) in place of the respective patient,
regarding outpatient as well as patients dur-
ing hospital treatment (new Art. 378 Swiss civil
law):
(1) the person denominated in an advance di-
rective;
(2) the legal assistant deputizing the patient (in
case of official assistance);
(3) the spouse or, in homosexual couples, the
legal partner, if they share the household
with the incompetent person and care for
her;
(4) the person, sharing the household with the
incompetent person and caring for her;
(5) the offsprings,
(6) parents and
(7) the siblings, if they also care for the incom-
petent person on a regular basis.
This will give partners and relatives much more
competence but also responsibility. Physicians
no longer are allowed to decide on their own for
the incompetent person according to her or his
apparent will.
– Legal measures to assist partially incompetent
persons will be much more flexible, graduated
and specific for the respective person
– Patients advance directives will become obliga-
tory to follow (new Art. 370 ff.).
– The cantons are allowed to impose additional
legal regulations for outpatient measures (new
Art. 437).
If treatment of dementia is to improve, then research
is essential. Every individual with dementia should
have the opportunity to take part in research. How-
ever, they also retain the right to refuse to cooperate.
– Issues of consent and confidentiality must be re-
spected and addressed. When informed consent
from the person with dementia is not possible,
consent from their legal representative is appro-
priate.
– Non-therapeutic research (without possible ben-
efit to the individual involved) is especially diffi-
cult to justify in those unable to give their own
fully informed consent.
As dementia progresses, this can severely influence
the activities of daily life and the performance of the
patient. One of the most common examples is the
driving ability which is inevitably compromised as
dementia develops:
– There is a general consensus that persons with
moderate to severe dementia (CDR stage 2.0 to
3.00) are not safe to drive.
– The relative risk of crashes for drivers with VaD
of CDR stage 1.00 is greater than society toler-
ates for any other group of drivers.
Furthermore, the following factors influence driving
safety:
– Loss of cognitive abilities; particularly deficits of
attention and of complex reasoning.
– Loss of visuo-spatial skills, difficulties in dealing
with visual stimuli under conditions of divided
attention and switching skills.
– Personality changes (especially in the frontal
lobe dementia).
– Lack of insight and impaired judgement.
– Loss of ability to compensate in different situa-
tions reduces the ability to drive.
– Even early in the course of illness there is evi-
dence that patients are more at risk of road traf-
fic accidents and they may become occasion-
ally or regularly lost. Forgetting where the car is
parked is frustrating, but not a safety issue.
167
Chapter 26: M. Graf and E. Krebs-Roubicek
Therefore lately introduced regulations oblige per-
sons aged 70 and above to check their ability to drive
on a yearly basis at physicians mandated by the au-
thorities. Before, those checks were largely optional
and performed by family doctors.
Conclusions
Competence can express to have the ability to un-
derstand, appreciate, reason and decide on specific,
important issues of daily life. During the manage-
ment of demented patients the competence must be
considered. Good management of demented patients
requires considerable community based resources,
backed up by easily accessible hospital and residen-
tial facilities. The concept of personhood and person-
168
centred care has become central to provision of high
quality dementia care. Good management will also
require the patient and caregiver to be regarded as a
partnership. Considering carer’s concerns will often
result in a better long term outcome for the patient.
Active treatment of troublesome symptoms and or-
ganisation of good quality care will favourably influ-
ence the outcome of all patients.
References
Bayer A, Reban J (2004) Alzheimer’s disease and related condi-
tions. Medea Press – M. Bransovsky, Rudolfov, CZ
Swiss Consensus for Diagnosis and Care of Demented Persons
in Switzerland 2007 (in press)
Schweizerische Alzheimervereinigung (2004)
Chapter 27
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: CZECH REPUBLIC
Iva Holmerová, Martina Rokosová, Božena Jurašková, Hana Vaňková, Hana Čvančarová, Pavla Karmelitová, and
Eva Provazníková
In Czechia, Alzheimer’s disease and other diseases
causing dementia have been a topic of discussion only
since last 10 years. Before, the syndrome of dementia
was considered to be a consequence of atherosclero-
sis, or better to say, the component of atherosclerosis.
In other instances, dementia was considered to be a
part of normal ageing, not a disease. This situation
has changed substantially which may be also due to
the activity of the Czech Alzheimer Society which
started its activity in 1997.
The primary medical care for patients with de-
mentia is provided by general practitioners. Each
general practitioner provides care to those persons
who are registered in his/her office. The care for
those persons is reimbursed form the general health
care insurance on the basis of capitation (per capita
payment).
In a situation when it is necessary to limit the
legal competency of a patient with dementia, for
instance because of a behavior that would threaten
himself/herself, or which would damage the environ-
ment, physician should pass this information to a
court and suggest limitation of a legal competence. It
is the court which ought to take a decision about le-
gal competence. However, the time of the procedure
is usually very long and, therefore, this institution is
not used in all cases for which it is adequate. Between
the time of the reporting to the court and the time of
the decision there is usually a very long period of time
when substantial changes of health status and of so-
cial circumstances can occur. The court may issue a
preliminary decision to try to settle all difficult cases;
however, this is not very common in the practice. On
the other hand, families are very cautious in these sit-
uations because they often consider the competence
limitation to be harmful for the patient and his/her
dignity especially because it is considered to be a neg-
ative label (Holmerová, 2004; Holmerová et al., 2003).
1 The consent with treatment and stay in an
institution
According to the legislation of Czech Republic, Act no
86/1992, a person may be admitted to a health care
institution without having given his/her own assent
only in the following situations:
– In cases of diseases listed in a special regulation,
where it is possible to impose a treatment on un-
willing patients;
– If a person afflicted with mental disorder or an
intoxicated individual represent danger for him/
her and/or for other persons and the environ-
ment;
– In cases of seriously health-impaired patients in
an acute or life-threatening situation when it is
not possible to obtain the consent because of se-
verity of health-impairment.
In all of the above-mentioned situations the health
care institution concerned must report not later than
24 hours to the court which is then obliged to consid-
er the case and decide within 7 days (Zákon 86/1992
Sb).
According to our experience, one may assume
that this regulation is not applied especially to per-
sons with dementia who are not able to express ex-
Chapter 27: I. Holmerová et al.
plicitly whether they agree with the stay in the health
care institution. Often the sign of consent is misun-
derstood. Only few health care institutions have un-
dertaken measures and adopted guidelines how to
inform persons with dementia and limited cognitive
capacity and how to get consent from them or/and
how to communicate with persons with dementia
to learn about their preferences. The above-men-
tioned regulation also does not apply to some (in
practice) frequent situations when it is necessary
to treat comorbidities of dementia or behavioral
and psychiatric symptomatology of persons with
dementia, conditions that worsen significantly the
quality of their life but are not dangerous to their
life or to the life of others. This regulation applies
to health care institutions, not to social care institu-
tions. We assume, therefore, that persons must not
stay in social care institutions without their consent
and, moreover, social care institutions must not use
any restraints. Unfortunately, this does not happen
in practice and the use of restraint is a widely-criti-
cized topic discussed in relation with social care in
institutions (Holmerová et al., 2003). All the rules
refer to persons without legally limited competency.
In such cases it is the guardian who decides on their
behalf and in some cases he must inform the court
as well.
2 Convention
In 1998 the Czech government adopted the Conven-
tion for the Protection of Human Rights and Dignity
of the Human Being with regard to the Application of
Biology and Medicine (Haškovcová, 2002). This con-
vention has become a part of Czech legislation after
the adoption and ratification by the Czech Parlia-
ment. This Convention provides rules on how to give
appropriate information so that the person gives free
and informed consent. All health care procedures
may be performed only on the condition the person
concerned gives free and informed consent which
may be freely withdrawn at any time. Some sources,
however, state that the general public has only very
170
little information concerning this important stand-
ard and, simply stated, people do not know it.
3 Documentation on informed consent
Since November 1, 2006 there is a regulation no.
385/2006 on health care documentation (Vyhláška
385/2006 Sb). This regulation includes duty of a
health care institution to provide informed consent
with documentation related to health care provision.
This regulation defines also conditions for the refusal
of health care. That is, again, valid for persons who
are not incapacitated legally. Especially the situation
of persons with dementia is very problematic from
this point of view as those persons are incapacitated
from the nature of the disease but they are not le-
gally incapacitated. Most of them, however, are not
able to consider their situation in an adequate way
and therefore they sign “the consent” without proper
understanding. This situation is a subject of concern
by the Czech Alzheimer Society and it is necessary to
implement guidelines on Advance Directives (Alzhe-
imer Europe) also in the Czech Republic (Advance
directives, Alzheimer Europe).
4 The role of ombudsman
The amended law on the Czech ombudsman (Public
Defender of Rights) came into effect on January 1, 2006
(Zákon 349/1999 Sb.). As a result, the ombudsman’s
responsibilities have been extended very radically to
include the task of performing systematic visits to all
places ( facilities), where persons restricted in their
freedom are or may be located, regardless of whether
the freedom of such persons has been restricted by a
ruling or order released by a public authority (such as
a court), or as a result of the actual situation and spe-
cific dependence on care provided. During his visits,
the Czech ombudsman examines the treatment such
people receive, endeavors to ensure that their funda-
mental rights are respected and boosts their protec-
tion against so-called mistreatment.
 Practice of competence assessment in dementia: Czech Republic
Controls of the ombudsman office raise recom-
mendations. The latest conclusions are based on the
Czech legislation and also on professional opinion,
including, e.g. guidelines of Czech Alzheimer Soci-
ety on the use of restraint in institutions (Doporučení
Alzheimer Europe týkající se omezovacích prostředků).
5 Driving capacity
The general practitioner who registers his/her pa-
tients for primary care is obliged to consider also
driving capacity. In all situations that are not com-
patible with driving he/she is obliged to report to a
vehicle inspectorate. Drivers older than 60 years are
obliged to have a health check documented in regular
intervals, this may be controlled by the police (Zákon
361/2000 Sb).
Strategies to evaluate acts of self-care and of self-
sufficiency in order to determine degree of de-
pendence for the purpose of social care provision
according to the law on social care 108/2006/Di-
gest/. (Zákon 108/2006 Sb)
(1) The ability of an individual to perform acts of
self-care and self-sufficiency is evaluated ac-
cording to activities which are defined for each
act of self-care and self-sufficiency.
(2) An individual is not regarded to be capable of
performing acts of self-care and self-sufficien-
cy under the following conditions. He or she is
not able to recognize the need to act in order to
provide self-care and self-sufficiency or is disa-
bled physically to act accordingly or is unable to
perform correctness check for the activity per-
formed already for some time, neither independ-
ently nor reliably.
6 Legal competency
Legal competency is a legal category which is closely
related with fundamental rights and freedoms, which
are imbedded in The Charter of Fundamental Rights
and Basic Freedoms (Resolution of the Presidium of
the Czech National Council of 16 December 1992 on
the declaration of the Charter of Fundamental Rights
and Basic Freedoms as a part of the constitutional
order of the Czech Republic as amended by later
regulations) and at the same time with legal capac-
ity. Constitutionally legal definition of legal capac-
ity is necessary to discriminate from the private-law
definition where according to §§ 7 – 10 of the Civil
Code (Act no. 40/1964/Digest/as amended by later
regulations) (Zákon.č. 40/1964 Sb) legal competency
to and legal capacity are differentiated. Legal capac-
ity is granted to everyone since his/her birth (and
even before, e.g. the so-called nasciturus, an unborn
child, if subsequently born alive, is considered as al-
ready in existence) until death. Legal competency as
a competency of an individual to acquire rights and
undertake obligations by one’s own legal acts is in its
entirety granted to anyone who reached 18 years of
age and becomes extinct in case of death the latest.
However an individual may be legal deprived of such
competency in given cases.
According to the article § 10 of the Civil Code
(Jedlička et al., 2003, Zákon.č. 40/1964 Sb), in case an
individual suffers from a permanent mental disorder
and is incapable of legal act, the court will exempt
him/her from that competency (section 1). In case an
individual suffers from permanent mental disorder,
perhaps on account of excessive drinking, or the use
of narcotics but yet is capable of some legal acts, the
court will limit his/her competency and will define
these limitations (section 2). Exemption or limita-
tions of competency may be modified or reversed in
case the reasons for such measure no longer apply.
It is a standard practice that the exemption of
limitations of legal competency becomes a matter
of civil court trial which may or may not be initiated
by a proposal, § 81 section 1 of the Code of Civil Pro-
cedure Act no. 99/1963/Digest/as amended by later
regulations (Bureš et al. 2003), i.e., by official author-
ity, i.e. resolution issued by court dealing with ini-
tiation of trial of legal competency based on motion
submitted by, e.g. state authority, health institution,
171
Chapter 27: I. Holmerová et al.
or a third-party individual. In this case the subjects
will not become a party to the case. It is possible that
the court learns about circumstances based on its
own research, according to which it may initiate the
trial without a motion.
In case the trial has been initiated based on a mo-
tion, which is granted to anyone who is competent to
become a party to a case, i.e. anyone who is compe-
tent to undertake rights and obligations is legitimate
to become a party to a case, or anyone whose com-
petence is granted by the court – § 19 Code of Civil
Procedure (Zákon.č. 99/1963 Sb) the motion to ex-
empt from, limit or restore legal competency can be
submitted even by an individual whose competency
is the one concerned. A health institution may be the
submitter only in case it is competent to undertake
rights and obligations and the same conditions apply
to welfare institutions (granted by judicature). It is a
matter of civil procedure regulated by §§ 186 – 191
Code of Civil Procedure (Zákon.č. 99/1963 Sb).
In case it is a matter of competency of the court,
the court of material competence is the district court;
the court of local competence is the court which
the individual with the competency concerned be-
longs to. The trial is free of charge (Baštecký, 1997).
The statement of claim must be provided with the
usual essentials. If the content of the petition regard-
ing legal competency of an individual is not explicit
enough, it must be made clear whether the individual
aims at acting as a submitter or someone who initi-
ates inception of the trial (Bureš et al., 2003).
If the statement of claim is not submitted by state
authority or health institution, the court may oblige
the submitter to hand in medical record concerning
mental condition of the individual under review. State
authorities and health institutions as well as the indi-
vidual whose competency is the one concerned can-
not be obliged to hand in medical record concerning
mental condition of the individual under review. The
obligation may or may not be introduced by the court.
A motion to restore legal competency may be submit-
ted even by an individual deprived of competency.
After the opening of the trial the court appoints
a guardian for the case to represent the individual
172
with the competency concerned. In addition, the in-
dividual under review is interrogated by the court,
but this examination may be avoided if it cannot be
executed or it cannot be executed without actual
harm of the individual under review. The court al-
ways interrogates an expert and based on his sug-
gestions the court may rule that the individual under
review must be examined in health institution for
a period of three months at maximum in case it is
absolutely necessary in order to enquire about the
health condition. In addition to the individual under
review, a party to the case is anyone who submits
the statement of claim. During examination of the
mental condition of the individual under review the
court considers expertise and if he/she is incapable
of independent existence, matter of fact findings col-
lected by the court are based on the individual situa-
tion and living conditions of that person, i.e., the way
he/she behaves in daily life, how he/she is able to
satisfy the needs of the family, how he/she manages
resources, the behavior of his wife/her husband and
his/her adult children.
For the sake of convenience, the court need not
decree legal proceedings and may decide to refrain
from delivery of decision on legal competency, if the
delivery may have a negative impact on the mental
condition of the addressee or if the addressee is in-
capable of comprehending the resolution. The court
takes a decision by announcing a verdict stating in-
formation about the citizen concerned. If the court
decided on limitations of legal competence, it may
define the extent by further specification of the limi-
tations (either what the individual is competent to do
or what the individual is not competent to do). The
status of such a citizen is then modified in such a way
that he/she is no longer partly or utterly competent
by entering into legal acts (possibly only by few) to
acquire rights and undertake obligations. The deci-
sion, however, is valid only in terms of future without
retroactive effect. The costs of the proceedings deal-
ing with legal competence are paid by the state (ipso
jure).
If we consider substantiation and finding of facts
related to the trials concerning legal competence it
 Practice of competence assessment in dementia: Czech Republic
is by no means a time-consuming procedure. The
reason is that interrogation of the individual under
review and other witnesses is usually followed by pro-
vision by the expert for the problem of consideration
one’s mental condition is one where there is a need
for expert knowledge. The decision by the court is
naturally dependent on the results of the expertise.
The appointed expert usually prepares the expertise
in written form and the expertise is delivered to the
court, eventually, to be delivered to the parties by the
court. After the submission of the expertise the ex-
pert is summoned to the proceedings decreed. The
expert is then given a hearing. At this point the court
is usually provided with enough evidence to decide in
the case. If there are no further obstacles (e.g., utiliza-
tion of court hearings, problems of delivery etc.), the
case may take place and lawfully end within couple
of month.
If the court decided on lawful limitation or dep-
rivation of legal competence, the trial is followed by
another trial concerning custody where the person
concerned is provided with a guardian, such provi-
sion is compulsory according to the law. The rights
and obligations related to material law are affected
by the limitation or deprivation of legal competence,
e.g. such an individual is incapable to act on his/her
own during legal or other proceedings. He/she must
be represented by a guardian appointed by the court.
The extent of guardian’s rights and obligations is de-
fined by the court in the decision on appointment of
a guardian.
The approval of the individual suggested as a
guardian to be appointed as a guardian and the fact
that he/she is a party to the case is a condition for his/
her appointment as a guardian. To choose the right
person as a guardian is necessary in order to protect
the interests of the individual with no or limited legal
competency. The search for a possible guardian takes
place within the family circle and among people close
to the person concerned in the first place. If no such
person agrees to be a guardian or if there is no such
person, it is possible to appoint another suitable per-
son and in case there is no one fitting, a public guard-
ian is appointed (Baštecký, 1997).
In the meantime, the court inspects the admin-
istration of assets performed by the guardian and in-
troduces appropriate measure to find out about secu-
rity of the assets and to secure the assets concerned.
After the termination of representation the guardian
submits to the court a final bill concerning the ad-
ministration of the assets. However, the guardian may
be obliged by the court to submit regular reports. As
regarding the usual matters, the guardian represents
the individual with no or limited competence to act
in law on his/her own, if it is a matter of extraordi-
nary circumstances his acts require approval of the
tutelary court.
References
Advance directives, Alzheimer Europe, Ustanovení vůle (trans-
lation I. Holmerová), available from www.alzheimer.cz
Baštecký J (1997) Psychiatrie, právo a společnost. Galén, Pra-
ha, pp 99–102
Bureš J, Drápal L, Krčmář Z, Mazanec M (2003) Občanský
soudní řád: Komentář, 6. vydání Praha, C.H. Beck
Haškovcová H (2002) Lékařská etika, Galen, Praha, pp 103
Holmerová I (2004) National background report on Czech
Republic (NABARE); available from www.uke.uni-hamburg.
de/extern/eurofamcare-de/, Hamburg
Holmerová I, Jurašková B, Zikmundová K (2003) Vybrané kapi-
toly z gerontology. ČALS, Praha
Jedlička O, Švestka J, Škárová M et al. (2003) Občanský zákoník:
Komentář. 8. vydání, C.H. Beck, Praha
Švestka O, Jedlička J et al. (1996) Ochrana osobnosti. 3.
přepracované a doplněné vydání, Linde Praha a.s., Praha
Doporučení Alzheimer Europe týkající se omezovacích
prostředků (transl. I. Holmerová), available from
www.alzheimer.cz
Sdělení Ministerstva zahraničních věcí 96/2001 Sb. O přijetí
Úmluvy na ochranu lidských práv a důstojnosti lidské
bytosti v souvislosti s aplikací biologie a medicíny: Úm-
luva o lidských právech a biomedicíně, available from
www.mvcr.cz
Vyhláška 385/2006 Sb. O zdravotnické dokumentaci, available
from www.mvcr.cz
Ústava České republiky č. 1/1993 Sb., available from
www.mvcr.cz
Zákon.č. 40/1964 Sb. Občanský zákoník ve znění pozdějších
předpisů, available from www.mvcr.cz
173
Chapter 27: I. Holmerová et al.

Zákon 86/1992 Sb. O péči o zdraví lidu (úplné znění s působ-
ností pro Českou republiku, jak vyplývá z pozdějších změn
a doplnění), available from www.mvcr.cz
Zákon 349/1999 Sb. O veřejném ochránci práv ve znění
pozdějších předpisů, available from www.mvcr.cz
Zákon 361/2000 Sb. o provozu na pozemních komunikacích
ve znění pozdějších předpisů, available from www.mvcr.cz
Zákon 108/2006 Sb. O sociálních službách, available from
www.mvcr.cz

174
Chapter 28
PRACTICE OF COMPETENCE ASSESSMENT IN DEMENTIA: UK
Sarmishtha Bhattacharyya and Alistair Burns
Healthcare professionals are often asked to assess an
older person’s competence to make a decision about
a range of circumstances including areas like testa-
mentary capacity, financial decisions, advance direc-
tives, consent to treatment, driving, research partici-
pation as well as decisions about going to a hospital or
a nursing home. The core symptom of dementia is the
impairment of one’s intellect, which might lead to dif-
ficulties in making such decisions; however such a di-
agnosis per se does not make a person incompetent.
Primarily it is important to inform a patient of
his diagnosis of dementia. Whilst there is a growing
consensus in favour of disclosing the diagnosis of
dementia to the person concerned, diagnostic dis-
closure in dementia remains both inconsistent and
limited (Bamford et al., 2004).
In U.K. guidelines for good practice are available
from various organizations, which include The Gen-
eral Medical Council (GMC), the British Medical As-
sociation (BMA), DVLA and others. In 1995, the BMA
and the Law Society jointly produced guidelines on
the assessment of mental capacity, which is currently
used as guidance by doctors practising here.
The Mental Capacity Act 2005 received Royal As-
sent in April 2005 and is due for implementation by
2007. It provides a statutory framework to empower
and protect vulnerable people who are unable to
make their own decisions. It works on basic princi-
ples which include a presumption of capacity in an
individual, the right of individuals to be supported
in making their own decisions, the duty to act in the
best interest of the patient and to always choose the
least restrictive option.
A person is said to lack capacity if he/she is un-
able to make a decision for oneself in relation to the
matter to be decided. According to the 2005 Act, the
patient should be unable to:
– understand the information relevant to the deci-
sion,
– retain the information,
– use the information as part of the process of mak-
ing a decision.
The Act sets out a single clear test for assessing
whether a person lacks capacity to take a particular
decision at a particular time. It is a “decision-specific”
test. No one can be labelled “incapable” as a result of
a particular medical condition or diagnosis. Section 2
of the Act makes it clear that a lack of capacity cannot
be established merely by reference to a person’s age,
appearance, or any condition or aspect of a person’s
behaviour that might lead others to make unjustified
assumptions about capacity.
In the following sections, assessment of compe-
tence with regard to various decisions and situations
are examined.
1 Testamentary capacity
The subject of testamentary capacity (ability to make
and execute a will) needs to be addressed early on in
dementia. The legal standard for this function is that
individuals must know, at the time the will is signed
or executed, the extent of their property, their blood
relations and the general nature of their material and
other assets. They must also have sufficient ability to
make a reasonable judgment based on this knowl-
edge. Their judgement should not be clouded by de-
Chapter 28: S. Bhattacharyya and A. Burns
lusions or other significant mental illness. A person
is not bound to leave his assets to a particular person
but the will would clearly be invalid if he or she had
forgotten he was married or had children.
Careful and searching questions need to be
asked and simple standard tests of cognitive function
are usually desirable.
2 Consent to treatment, hospital or nursing
home admission
In UK, Courts have held (Re T) that common law
permits every person to have a right to refuse treat-
ment even if such refusal should result in death.
When obtaining consent to treatment the doctors
overriding concern must always be to do what is in
the patient’s best interest under Common Law. It is
vital to make every attempt to ensure that the pa-
tient understands the nature of treatment, risks and
benefits. If there is incapacity, it is good practice to
seek the support of next of kin or carer for giving
treatment for serious physical illness in the patient’s
best interest; however this does not give legal au-
thority to the next of kin to make decisions on the
patient’s behalf. For mental disorder consideration
should be given to the use of compulsion under the
Mental Health Act legislation (1983). When there
are uncertainties about the patient’s competence, it
is wise to consult either colleagues who know the
patient or to obtain an independent second opin-
ion, including the opinion of a psychiatrist on the
patient’s mental state.
A patient’s lack of objection to stay in a hospital
or nursing home can often be taken as consent. This
is controversial and has recently been challenged in
the Bournewood (2005) ruling whereby ECHR has
ruled that Common Law is not sufficient to justify
keeping such a “not unwilling” patient in hospital.
A judgment of the ECHR is not directly binding on a
NHS trust in the U.K. However, every trust is a “pub-
lic authority” under the Human Rights Act 1998 and
therefore bound to act in a way that is compatible
with the ECHR and the cases decided under it.
176
Another contentious area is the administration
of covert medication to incapable patients who resist
it when it is given openly (incapacitated patients who
do not comply). This is judged ethically legitimate
in exceptional circumstances (Treloar et al., 2000).
Common law has to be invoked when the provisions
of the MHA 1983 do not apply. It is important to bal-
ance ease of access to good clinical care against re-
strictions, which aim to prevent abuse.
Section 5 of the Mental Capacity Act clarifies
that, if a person provides care or treatment to some-
one who lacks capacity, then this can be done with-
out incurring legal liability. The key lies in the proper
assessment of capacity and what would be in the best
interest of the person concerned. This will cover ac-
tions that would otherwise result in a civil wrong or
crime if someone has to interfere with the person’s
body or property in the ordinary course of caring for
example, by giving an injection or by using the per-
son’s money to buy items for them would not result in
a civil wrong or crime.
The ability to consent to medical treatment or
care is a specific form of capacity that requires cer-
tain skills and cognitive abilities. In order to consent
to treatment, individuals should be able to (BMA
guidelines):
– Understand in simple language what medical
treatment is, its purpose and nature and why it is
being proposed.
– Understand its principle benefits, risks and alter-
natives.
– Understand in broad terms what will be the conse-
quences of not receiving the proposed treatment
– Retain information for long enough to make a de-
cision.
– Make a free choice.
These guidelines should be followed whilst assess-
ing for competence in consenting to any treatment.
However one must always remember that confusion
might be transient and that a mild dementia might
not affect the patient’s ability to give informed con-
sent.

3 Capacity to enter into a contract, including
marriage
General legal rules apply to contracts and the start-
ing point is that there is a presumption of capacity to
enter into a contract. Four general rules are identified
in BMA’s guidance (BMA 1995). These are:
– Specificity relative to the contract.
– Capability of understanding the nature and ef-
fects of the specific contract and agreeing to it.
– Evidence of capacity at the specific moment in
time.
– Intention to enter into a legally binding con-
tract.
People without capacity are bound by the terms of
a contract into which they have entered, even if it is
unfair, unless it can be shown that the other party to
the contract was aware of their mental incapacity, or
should have been aware of this.
If a person is covered by the jurisdiction of the
Court of Protection because it has been established
on medical evidence that they are incapable, by reason
of mental disorder, of managing property and affairs,
that person cannot enter into any contract, which is
inconsistent with the Court’s powers. Once again for-
mal assessment of competence may be needed.
Marriage is a contractual relationship. There
are instances in which one of the marital partners
has not appeared to fully grasp the situation due to
dementia. Marriage contracts may be invalid if one
of the partners did not understand the nature of the
marriage ceremony or understand the obligations
and responsibilities of marriage.
4 Capacity to deal with financial affairs
A power of attorney is a legal document by which a
donor enables another person of his choice (the at-
torney) the authority to act in the donor’s name and
on his behalf in relation to the donor’s property and
financial affairs. The attorney can then act as if he
Practice of competence assessment in dementia: UK
were the donor. In English law an ordinary power
of attorney signed by a person who lacks capacity is
null and void, unless it can be proved to have been
signed during a lucid interval. Currently, such an at-
torney has no power to make decisions concerning
personal matters or medical care and treatment on
behalf of the donor, but this is going to change when
the Mental Capacity Act 2005 comes into force. This
will encompass Lasting Power of Attorney.
The Enduring Powers of Attorney Act came into
force in 1985, and EPA’s became available in England
and Wales in 1986. The Act itself, states nothing about
the degree of understanding the donor needs in order
to make a valid EPA. This was later resolved in a test
case Re K, Re F, (1988) in which the judge discussed
the capacity to create an enduring power. He set out
four pieces of information that any person creating
an EPA should understand;
– the attorney will be able to assume complete au-
thority over the donor’s affairs,
– the attorney will be able to do anything with the
donor’s property which the donor could have done,
– the authority will continue if the donor should be-
come mentally incapable,
– if the donor should be or become mentally incapa-
ble, the power will be irrevocable without confir-
mation by the Court of Protection.
The judge in the case also commented that if the do-
nor is capable of signing an enduring power of attor-
ney but is not capable of managing and administer-
ing his own property or affairs, that the attorney has
the obligation to register the power with the Court of
Protection straight away. The donor and his closest
relatives must be informed of the attorney’s intention
to register the power. Both the donor and any of the
relatives have the right to object to the registration of
the power. For example, if they believe that the donor
is not yet incapable of managing his affairs, or that
the power may be invalid because it has been revoked
by the donor.
Currently EPA’s are restricted to financial mat-
ters only and can take effect at once and continue or
177
Chapter 28: S. Bhattacharyya and A. Burns
when the donor becomes incapable. Like a will, an
EPA can be made without a solicitor, but in practice
it is wise to ask a solicitor to ensure that a form has
been correctly completed.
Referral to a Court of Protection (CP) should be
considered if it is believed that the patient is becom-
ing incapable of managing his/her affairs because of
mental incapacity. Usually the nearest relative ap-
plies to the court but anyone with legitimate interest
may apply. The doctor’s role in referrals to the CP is
to complete a medical certificate stating that the pa-
tient is incapable of managing his/her affairs by vir-
tue of a mental disorder, the nature of which must be
described. The Court then appoints a ‘receiver’ who
manages the patient’s affairs under the supervision
of the Court.
Once the CP has registered the power, the donor
and the attorney no longer have concurrent authori-
ty. Only the attorney has the authority to manage and
administer the donor’s property and affairs. If, how-
ever, even after registration the donor has capacity to
perform some tasks, such as running a bank account
or shopping, the fact that the power has been regis-
tered should not as a matter of practice prevent the
donor from carrying out these activities.
This legislation and guidance is currently in
practice but will be superseded by the Mental Capac-
ity Act 2005, which comes into force in 2007 with the
following changes.
Lasting Power of Attorney (LPA’s)
The Act allows a person to appoint an attorney (simi-
lar to EPAs) to act on their behalf if they should lose
capacity in the future. It also allows LPAs to make
health and welfare decisions.
Court appointed deputies
The Act provides for a system of court appointed dep-
uties to replace the current system of receivership in
the Court of Protection who will be able to take deci-
sions on welfare, healthcare and financial matters as
authorised by the Court but will not be able to refuse
consent to life-sustaining treatment.
178
New Court of Protection
The new Court will have jurisdiction relating to the
whole Act and will be the final arbiter for capac-
ity matters with its own procedures and nominated
judges.
New Public Guardian
The Public Guardian and his staff will be the regis-
tering authority for LPAs and deputies. They will su-
pervise deputies appointed by the Court and provide
information to help the Court make decisions.
5 Advance directives and end of life decisions
An Advance Directive is in most cases a document
signed by a competent person giving direction to help
care providers about future treatment choices in cer-
tain circumstances. Before the Mental Capacity Act
2005 comes into force there is no specific Act of Par-
liament in the U.K. that covers Advance Directives,
but they are recognized and must be upheld under
common law as long as certain criteria are followed.
The criteria required for an Advance Directive to be
valid were identified (Jones, 2005) by Hughes in AK
(Adult Patient) and by Munby in HE vs A Hospital NHS
Trust (2003). Doctors should respect these criteria but
cannot be forced to commit illegal acts such as eutha-
nasia. The Mental Capacity Act 2005 provides a legal
basis underpinning the rights of an advance directive.
The following factors are addressed in the Act:
– People may make a decision in advance to refuse
treatment if they should lose capacity in the fu-
ture.
– An advance decision will have no application to
any treatment, which a doctor considers necessary
to sustain life unless strict formalities have been
complied with.
– The decision must be in writing, signed and wit-
nessed.
– There must be an express statement that the deci-
sion stands “even if life is at risk”.

The importance of Advance Directives arises espe-
cially in situations where appropriateness of cardiop-
ulmonary resuscitation for inpatients with dementia
arises. It is important to consider the patient’s wishes
but it is also prudent to involve the carers, and mem-
bers of the multidisciplinary team, especially if the
patient is deemed to be incapable. The decision, in
the end should once again always be what the best
option is available for the patient.
6 Driving and dementia
It is vital that when a diagnosis of dementia has been
discussed, the patient is advised to inform DVLA of
the diagnosis. Conflicts may arise, for example, be-
tween the need (and legal obligation) to protect the
public from an impaired person with dementia who
is a danger when driving, and the ethical obligation
to preserve medical confidentiality (DVLA, 1999).
The GMC’s position on breach of confidentiality
and obligations under law suggests that the doctor
should take direct action to inform the DVLA if it is
believed that there is serious risk to public and that
driving is continuing despite advice to the contrary
(DVLA, 2001). It seems prudent to ensure that there
is documentary record that advice of an appropriate
nature has been given to the older person diagnosed
with dementia and this should include driving and
legal obligations to inform the DVLA. This is im-
portant in relation to subsequent legal action such
as from a fellow road user accidentally injured by a
driver with dementia. The most recent 2005 (DVLA,
2005) guidance states that it is extremely difficult
to assess driving ability in those with dementia but
those with poor short-term memory, lack of insight
and judgement are almost certainly not fit to drive.
It emphasizes explicitly that the “DVLA must be no-
tified as soon as diagnosis (of dementia) is made”
(DVLA, 1999). It also advises that when a patient
cannot be persuaded to stop driving, or when the
doctor is given or finds evidence that a patient is
continuing to drive contrary to advice, the doctor
should disclose relevant medical information im-
Practice of competence assessment in dementia: UK
mediately, in confidence, to the medical advisor at
the DVLA. Before taking action, the doctor should
inform the patient of the decision to do so. Once the
DVLA has been informed, the doctor should write
to the patient to confirm that disclosure has been
made. Guidance also suggests that every reasonable
effort to deter patients from driving should be made
and this may include telling the next of kin of the
situation.
DVLA acknowledges the variable presentations
and rates of progression in different patients and
often those with mild dementia are issued a licence
subject to annual review.
7 Research and dementia
The Mental Capacity Act 2005 sets clear parameters
for research into dementia in those who lack capacity
to consent to participation. These mirror the present
guidelines used in practice:
– Research involving, or in relation to, a person
lacking capacity may be lawfully carried out
if an “appropriate body” (normally a Research
Ethics Committee) agrees that the research is
safe, relates to the person’s condition and can-
not be done as effectively using people who have
mental capacity.
– The research must produce a benefit to the per-
son that outweighs any risk or burden.
– Alternatively, if it is to derive new scientific
knowledge it must be of minimal risk to the per-
son and be carried out with minimal intrusion or
interference with their rights. Carer providers or
nominated third parties must be consulted and
agree that the person would want to join an ap-
proved research project.
– If the person shows any signs of resistance or in-
dicates in any way that he does not wish to take
part, the person must be withdrawn from the
project immediately.
– Transitional regulations will cover research
started before the Act where the person original-
179
Chapter 28: S. Bhattacharyya and A. Burns
ly had capacity to consent, but later lost capacity
before the end of the project.
A balance needs to be attained between recruiting
such patients for research and the need to protect the
rights of such individuals.
In conclusion, achieving a proper legal and ethical
balance to make decisions can be particularly taxing
in people with dementia. All clinicians should ensure
sufficient familiarity with current legal and ethical
concepts and how these concepts might be applied.
No country in Europe has a specific law deal-
ing with all the different issues facing people with
dementia as well as their care providers. It would be
practical for the clinician to work in conjunction with
the family to resolve these dilemmas. At all times it
is prudent to discuss or seek advice from appropri-
ate colleagues, ethicists or even trust/hospital legal
representatives.
References
Bamford C et al. (2004) Disclosing a diagnosis of dementia: a
systematic review. Int J Geriatr Psychiatry 19(2): 151–69
British Medical Association (1995) Assessment of mental ca-
pacity: Guidance for doctors and lawyers. A report of the
BMA and The Law Society. BMA, London
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DVLA Guidelines: http://www.dvla.gov.uk/at_a_glance/ch4_
psychiatric.htm
Good Medical Practice, GMC. http://www.gmc-uk.org/guidance/
library/GMP.pdf
HE vs A Hospital NHS trust. Family Division 2003
HL v United Kingdom, Application no. 45508/99, decision of 5
October 2004
Jones R (2005) Mental Capacity Act Manual. Sweet and Max-
well, London
Mental Capacity Act 2005: http://www.opsi.gov.uk/acts/
acts2005/20050009.htm
Royal College of Physicians and Royal College of Psychiatrists
(2003) The psychological care of medical patients: a practi-
cal guide. RCP, RCPsych, London
Re AK (Adult patient) (Medical treatment: consent) (2001) 1
FLR 129, (2001) 58 BMLR 151
Re C (Adult: Refusal of Treatment) (1994) 1 WLR 290; (1994)
1 All ER 819
Re K, Re F (1988) 1 All ER 358
Re T (adult refusal of treatment) (1994 1 All ER 819)
Re T refusal of medical treatment) [(1992 4 All ER 649 (CA)]
R v Bournewood Community and Mental Health NHS Trust, ex
parte L [1999] AC 458
Tan JOA, McMillan JR (2004) The discrepancy between the le-
gal definition of capacity and the BMA’s guidelines. JME 30:
427–29
Treloar et al. (2000) APT. Administering medicines to patients
with dementia and other organic cognitive syndromes
LIST OF CONTRIBUTORS

Bartley Mairead, Department of Medical Gerontol- Burns Alistair, MD, FRCP, FRCPsych, Prof. of Old
ogy, Adelaide and Meath Hospital, Dublin 24, Ireland Age Psychiatry, University of Manchester, Education
E-mail: arhc@amnch.ie and Research Centre, Wythenshawe Hospital,
Manchester M23 9LT, UK
Bernabei Roberto, Prof., Direttore Dipartimento di
E-mail: alistair.burns@manchester.ac.uk
Scienze Gerontologiche, Geriatriche e Fisiatriche,
Università Cattolica del Sacro Cuore, Largo F. Vito, 1, Buss Dorthe Vennemose, Memory Disorders
00168 Rome, Italy Research Group, Department of Neurology,
E-mail: roberto_bernabei@rm.unicatt.it Copenhagen University Hospital, Rigshospitalet,
9 Blegdamsvej, 2100 Copenhagen, Denmark
Bhattacharyya Sarmishtha, Specialist Registrar in
E-mail: rh15740@rh.dk
Old Age Psychiatry, Stepping Hill Hospital, Stockport,
SK2 7JE, UK Calabrese Pasquale, Priv.-Doz. Dr.rer. nat., Depart-
E-mail: sarmishtha66@aol.com ment of Neuropsychology and Behavioural Neurol-
ogy, University Clinic (Knappschaftskrankenhaus),
Björkstén Karin Sparring, M.D. Ph.D., Specialist of
Faculty of Medicine, Ruhr-University, In der Schor-
Psychiatry and Geriatrics, Administrativa enheten,
nau 23-25, 44892 Bochum, Germany
Psykiatri Sydöst, Ektorspsvägen 2B, 131 45 Nacka,
E-mail: pasquale.calabrese@rub.de
Sweden
E-mail: karin.sparring.bjorksten@ki.se Camus Vincent, Prof., Centre Hospitalier Régional
Universitaire, Université François Rabelais de Tours,
Bouyssy Marie, M.D., Centre Hospitalier Régional
37044 Tours Cedex 01, France
Universitaire de Tours, 37044 Tours, France
E-mail: camus@chu-tours.fr
E-mail: mbouyssy@hotmail.com
Carvalho Pedro Silva, Psychiatrist, Hospital Magal-
Bowman Deborah,
hães Lemos and Hospital Prelada-Porto, Old Age
Senior Lecturer in Medical Ethics and Law,
Psychiatry Consultant of S.S. Santa Casa Misericór-
Room 43, 1st Floor, Jenner Wing,
dia do Porto, R. João Deus 777, 4100-462 Porto,
Medical and Healthcare Education,
Portugal
St George’s, University of London,
Cranmer Terrace, London SW17 0RE, UK Cerejeira Joaquim, Register Psychiatry, Psychiatric
E-mail: dbowman@sgul.ac.uk Clinic, Coimbra University Hospitals, Praceta Mota
Pinto, 3000 Coimbra, Portugal
Brand Matthias, PhD, University of Bielefeld,
E-mail: jcerejeira@netcabo.pt
Department of Physiological Psychology, 33501
Bielefeld, Germany
E-mail: m.brand@uni-bielefeld.de
List of Contributors

Čvančarová Hana, JUDr., Judge of the Appellation Hughes Julian C., MA, MB ChB, MRCPsych, PhD,
Court, Větrušická 878/28, 182 00 Praha 8 – Kobylisy, Ash Court, North Tyneside General Hospital, Rake
Praha, Czech Republic Lane, North Shields, Tyne and Wear, NE29 8NH, UK
E-mail: hcvancarova@msoud.pha.justice.cz Consultant and Honorary Clinical Senior Lecturer in
Old Age Psychiatry, North Tyneside General Hospital
Despos Katerina, Lawyer, 6, Odysseos street (1st
and the Institute for Ageing and Health, Newcastle
Parodos Ampelonon), 55535 Pylaia, Thessaloniki,
University, UK
Greece
E-mail: j.c.hughes@ncl.ac.uk
Engedal Knut, Prof. of Geriatric Psychiatry, Norwe-
Johansson Kurt, M.D., Ph.D., Traffic Medicine
gian Centre for Dementia Research, Department
Center, Department of Geriatric Medicine, Karolin-
of Geriatric Medicine, Ullevaal University Hospital,
ska University Hospital, 141 86 Stockholm, Sweden
0407 Oslo, Norway
E-mail: kurt.johansson@ki.se
E-mail: knut.engedal@nordemens.no
Jurašková Božena, MUDr., Ph.D., Consultant Ge-
Firmino Horàcio, Coordinator of Gerontopsychiatry,
riatrician, Department of Gerontology, Teaching
Psychiatric Clinic, Coimbra University Hospitals, Cli-
Hospital Hradec Králové, Univerzita Karlova v Praze,
nica Montes Claros, Rua Machado de Castro 4, 3000
poštovní přihrádka 38, Šimkova 870, 500 38 Hradec
Coimbra, Portugal
Králové 1, Czech Republic
E-mail: hfirmino@mac.com
E-mail: juraskovab@lfhk.cuni.cz
Fountoulakis Konstantinos N., Lecturer in Psychia-
Karmelitová Pavla, Mgr., Head of Department of
try, 3rd Department of Psychiatry, Aristotle Uni-
Health and Social Care, Odbor zdravotnictví a
versity of Thessaloniki, Greece, 6, Odysseos str. (1st
sociálních služeb, Úřad MČ Praha 8, Zenklova 1
Parodos Ampelonon), 55535 Pylaia, Thessaloniki,
180 48 Praha 8, Czech Republic
Greece
E-mail: pavla.karmelitova@p8.mepnet.cz
E-mail: kfount@med.auth.gr
Kerschen Nicole, Senior Researcher CNRS
Graf Marc, Dr. med., Forensic psychiatry, University
IRERP UMR CNRS N° 7029
Psychiatric Hospitals, Wilhelm-Klein-Strasse 27,
University Paris X
4025 Basel, Switzerland
200, avenue de la République
E-mail: marc.graf@upkbs.ch
92 Nanterre, France
Hadryś Tomasz, Dr., Department of Psychiatry, E-mail: nkersche@u-paris10.fr
Wroclaw Medical University, Pasteura 10, 50 367
Kiejna Andrzej, Prof. in Psychiatry, Epidemiologist,
Wroclaw, Poland
Department of Psychiatry, Wroclaw Medical Univer-
E-mail: thadrys@psych.am.wroc.pl
sity, Pasteura 10, 50 367 Wroclaw, Poland
Holmerová Iva, MUDr., Ph.D., Director and Consult- E-mail: akiejna@psych.am.wroc.pl
ant Geriatrician, Department of Management and
Kirkevold Øyvind, Research scholar, Registrated
Supervision, Faculty of Humanities, Charles Univer-
Nurse (RN), Master of Public Health (MPH), Dr. Phil.
sity Praha, Centre of Gerontology, Šimůnkova 1600,
(PhD), Norwegian Centre for Dementia Research,
18200 Praha 8, Czech Republic
Vestfold Mental Health Care Trust, Tønsberg, P.O. 64,
E-mail: iva.holmerova@gerontocentrum.cz
3107 SEM, Norway
E-mail: oyvind.kirkevold@nordemens.no

182

Krebs-Roubicek Eva, Dr. med., president of the
swiss society for geriatric psychiatry, University
Psychiatric Hospitals, Wilhelm-Klein-Strasse 27,
4025 Basel, Switzerland
E-mail: eva.krebs-roubicek@upkbs.ch
Lawlor Brian, Prof., MB, MD, FRCPsych, Consultant
Old Age Psychiatrist, Mercer’s Institute for research
in aging, Hospital 4, St. James’s Hospital, Dublin 8,
Ireland
E-mail: balawlor@indigo.ie
Legay Emilie, M.D., Centre Hospitalier Régional
Universitaire de Tours, 37044 Tours, France
E-mail: e_legay@yahoo.tr
Liperoti Rosa, MD, MPH, Centro di Medicina
dell’Invecchiamento, Università Cattolica del Sacro
Cuore, Largo A. Gemelli 8, 00168 Rome, Italy
E-mail: rossella_liperoti@rm.unicatt.it
Lipp Volker, Prof. Dr., Universität Göttingen,
Institut für Privat- und Prozessrecht, Lehrstuhl für
Bürgerliches Recht, Zivilprozessrecht und Rechts-
vergleichung, Platz der Göttinger Sieben 6, 37073
Göttingen, Germany
E-mail: lehrstuhl.lipp@jura.uni-goettingen.de
Luanaigh Conor Ó, Dr. MB, MRCPsych, Research
Fellow and Honorary Lecturer in Old Age Psychiatry,
Mercer’s Institute for Research in Aging, Hospital 4,
St. James’s Hospital, Dublin 8, Ireland
E-mail:coluanaigh@stjames.ie
Lundberg Catarina, Psychologist, PhD, Traffic
Medicine Center, Department of Geriatric Medicine,
Karolinska University Hospital, 141 86 Stockholm,
Sweden
E-mail: catarina.lundberg@ki.se
Maeck Lienhard, Dr.med., University Psychiatric
Hospitals, Wilhelm-Klein-Strasse 27, 4025 Basel,
Switzerland
E-mail: lienhard.maeck@upkbs.ch
List of Contributors
Markowitsch Hans J., PhD, University of Bielefeld,
Department of Physiological Psychology, PF 100131,
33501 Bielefeld, Germany
E-mail: hjmarkowitsch@uni-bielefeld.de
Marksteiner Josef, Department of General Psychia-
try, Medical University Innsbruck, Anichstrasse 35,
6020 Innsbruck, Austria
E-mail: j.marksteiner@uibk.ac.at
Marquez Fernando, M.D., Assoc. Prof. of Psychiatry,
Department of Psychiatry, University of Santiago de
Compostela (USC), 15782 Santiago de Compostela,
Spain
E-mail: fernando.marquez.gallego@sergas.es
Mateos Raimundo, M.D., PhD., Prof. of Psychiatry,
Department of Psychiatry, University of Santiago de
Compostela (USC), Coordinator of the Psychogeri-
atric Unit, CHUS University Hospital, Santiago de
Compostela, Spain
E-mail: mrmateos@usc.es
O’Neill Desmond, MD FRCPI, Assoc. Prof. (Medical
Gerontology), Trinity Centre for Health Sciences,
Adelaide and Meath Hospital, Dublin 24, Ireland
E-mail: des.oneill@amnch.ie
Olde Rikkert Marcel GM, MD, PhD, Prof. in Geriat-
ric Medicine, University Medical Centre Nijmegen;
Alzheimer Centre Nijmegen (UMCN), Department
of Geriatric Medicine, University Hospital Nijmegen,
P.O. Box 9101, 6500 HB Nijmegen, The Netherlands
E-mail: m.olde-rikkert@ger.umcn.nl
Provazníková Eva, DiS, Project manager, Czech
Alzheimer Society, Diakonie ČCE, Belgická 22, 120 00
Praha 2, Czech Republic
E-mail: eprov@centrum.cz
Rokosová Martina, Mgr., Vice Chairperson, Czech
Alzheimer Society, Šimůnkova 1600, 18200 Praha 8,
Czech Republic
E-mail: martina.rokosova@gerontocentrum.cz
183
List of Contributors
Rymaszewska Joanna, Dr, Assoc. Prof., Specialist in
Psychiatry, Department of Psychiatry, Wroclaw
Medical University, Pasteura 10, 50 367 Wroclaw,
Poland
E-mail: jrymaszewska@psych.am.wroc.pl
Soto Maria E., Alzheimer’s Disease Research and
Clinical Center, Department of Internal Medicine
and Geriatrics, Toulouse University Hospital France,
Service de Médecine Interne et de Gérontologie
Clinique, Pavillon J. P. Junod, Centre Hospitalier
Universitaire La Grave-Casselardit, 170 avenue de
Casselardit, TSA 40031, 31059 Toulouse cedex 9,
France
E-mail: soto-martin.me@chu-toulouse.fr
Stoppe Gabriela, Prof. Dr. med., Professor of
Psychiatry, University Psychiatric Hospitals,
Wilhelm-Klein-Strasse 27, 4025 Basel, Switzerland
E-mail: gabriela.stoppe@upkbs.ch
Sulkava Raimo, Prof. of Geriatrics, University of
Kuopio, Department of Public Health and Clinical
Nutrition, P.O. Box 1627, 70211 Kuopio, Finland
E-mail: raimo.sulkava@uku.fi
Tătaru Nicoleta, Dr., Senior Consultant Psychiatrist,
Forensic Hospital Ştei, Bihor, România, 36, Cuza
Vodă Street, 410101 Oradea, România
E-mail: nicoleta_tataru@hotmail.com
Tsantali Eleni, Dr, PhD Psychologist, The Greek
Association of Alzheimer’s Disease and Related
Disorders, Daily Care and Research Center of
Cognitive Rehabilitation, Merkouriou 5, 54655
Thessaloniki, Greece
E-mail: elentsnt@psy.auth.gr
184
Tsolaki Magda, Dr, MD, PhD, Assoc. Prof. of Neurol-
ogy, 3rd Department of Neurological Clinic, Hospital
G. Papanikolaou, 570 10 Thessaloniki, Greece;
Aristotle University of Thessaloniki, Greece
E-mail: tsolakim@med.auth.gr
Vaňková Hana, MUDr, Research Coordinator,
Gerontologické centrum, Šimůnkově 1600, 182 00
Praha 8 – Kobylisy, Czech Republic
E-mail: hana.vankova@gerontocentrum.cz
Vellas Bruno, Alzheimer’s Disease Research and
Clinical Center, Department of Internal Medicine
and Geriatrics, Toulouse University Hospital France,
Service de Médecine Interne et de Gérontologie
Clinique, Pavillon J. P. Junod, Centre Hospitalier
Universitaire La Grave-Casselardit, 170 avenue de
Casselardit, TSA 40031, 31059 Toulouse cedex 9,
France
E-mail: vellas.b@chu-toulouse.fr
Vorm Anco vd, Researcher, Department of
Ethics, Philosophy and History of Medicine,
University Medical Centre Nijmegen (UMCN),
6500 HB Nijmegen, The Netherlands
E-mail: a.vandervorm@etg.umcn.nl
Waldemar Gunhild, M.D. Ph.D., Professor of
Neurology, Memory Disorders Research Group,
Department of Neurology, Copenhagen University
Hospital, Rigshospitalet, 9 Blegdamsvej,
2100 Copenhagen, Denmark
E-mail: rh15740@rh.dk
Wancata Johannes, Prof. Dr. med., Department of
Psychiatry and Psychotherapy, Division of Social
Psychiatry, Medical University of Vienna, Währinger
Gürtel 18–20, 1090 Vienna, Austria
E-mail: johannes.wancata@meduniwien.ac.at