Aging & Mental Health

ISSN: 1360-7863 (Print) 1364-6915 (Online) Journal homepage: https://www.tandfonline.com/loi/camh20

Diagnosis and disclosure of dementia – A

comparative qualitative study of Irish and Swedish
General Practitioners

Vanessa Moore & Suzanne Cahill

To cite this article: Vanessa Moore & Suzanne Cahill (2013) Diagnosis and disclosure of dementia
– A comparative qualitative study of Irish and Swedish General Practitioners, Aging & Mental
Health, 17:1, 77-84, DOI: 10.1080/13607863.2012.692763

To link to this article: https://doi.org/10.1080/13607863.2012.692763

Published online: 12 Jun 2012.

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Aging & Mental Health, 2013
Vol. 17, No. 1, 77–84, http://dx.doi.org/10.1080/13607863.2012.692763

Diagnosis and disclosure of dementia – A comparative qualitative study of Irish and

Swedish General Practitioners
Vanessa Moorea* and Suzanne Cahillb
a
Living with Dementia Research Program, School of Social Work and Social Policy, Trinity College Dublin,
Dublin, Ireland; bSchool of Social Work and Social Policy, Trinity College Dublin and The Dementia
Services Information and Development Centre, Dublin, Ireland
(Received 23 December 2011; final version received 1 May 2012)

Objectives: To explore the attitudes of Irish and Swedish General Practitioners (GPs) to the diagnosis and
disclosure of dementia to patients; to investigate GP under-graduate/post-graduate training in dementia; to
examine the post-diagnostic support services available to GPs in both countries and to investigate the extent to
which dementia is perceived as stigmatising.
Methods: A cross-national exploratory qualitative design was used. In-depth interviews were conducted with five
Irish and four Swedish GPs. Interviews were transcribed, translated, thematically coded and categorised.
Results: Both Irish and Swedish GPs unequivocally considered the early diagnosis of dementia important but
neither group was proactive in making a diagnosis. Both groups relied heavily on family members or patients to
bring to their attention memory loss and cognitive impairment problems. Most GPs reported a reluctance to
diagnose and several acknowledged going to considerable lengths to avoid using the word ‘dementia’. The
Swedish GPs had more exposure to dementia-specific training, saw the value in training and were generally very
satisfied with post-diagnostic dementia services available to patients, while Irish GPs were less likely to have
undergone training, were more equivocal about its value and were very dissatisfied with the community services
available.
Conclusion: Despite the presence of very adequate post-diagnostic support services for people recently diagnosed
with dementia, the majority of Swedish GPs like their Irish counterparts displayed therapeutic nihilism and were
reluctant to speak overtly to their patients about their dementia. Dementia continues to be a stigmatising illness
for both Irish and Swedish GPs.
Keywords: dementia; general practitioners; Ireland; Alzheimer’s disease; Sweden

Introduction social care service systems diagnose and disclose

Recent estimates suggest there are now 42,000 people
in Ireland living with dementia, a figure set to rise to
over 140,000 by 2041 (Cahill, O’Shea, & Pierce, 2012).
In contrast in Sweden, there are already 140,000 men
and women living with dementia, and by 2040 this
estimate is due to double to 250,000 (SBU, 2008;
Socialstyrelsen, 2005). Accordingly like several other
European countries, Ireland and Sweden are both
confronting a very costly, challenging illness of
increasing magnitude; an illness likely to require
creative and flexible policy responses. However unlike
Ireland, Sweden has a longer history of population
ageing; 18.8% of the Swedish population were in 2011
aged over 65 (Statistiska centralbyrån, 2012) compared
with 11% of the Irish (Central Statistics Office Ireland,
2007) and as a result, has had more time to design
services and develop health and social policy to
promote the care and welfare of these people.
In both countries General Practitioners (GPs) are
the first point of contact for individuals and family
members worried about the signs and symptoms
of dementia. The purpose of this article is to explore
how GPs in these two different European countries,
reflecting two very different systems of health and
dementia.
Literature review
A burgeoning body of international literature now
exists on the topic of GPs’ approaches to diagnosing
and disclosing dementia to patients and their family
members (Cahill, Clark, Walsh, O’Connell, & Lawlor,
2006; Cahill et al., 2008; de Lepeleire & Heyrman,
1999; Downs, 1996; Hansen, Hughes, Routley, &
Robinson, 2008; O’Connor, 2011; Turner et al., 2004;
Woods et al., 2003). The obstacles and facilitators of
timely recognition of dementia in primary care have
also been well documented in a pan European pilot
study of eight European Union countries (Iliffe et al.,
2005; Woods et al., 2003). A consensus exists that
diagnosis is an important transition, as it marks a shift
from the uncertainty and ambiguity about the early
signs and symptoms of dementia to a phase in which
the person with the illness and family members can
learn to adapt to loss of function (Woods et al., 2003)
and live with the memory loss and cognitive impair-
ment. The many other benefits of a timely diagnosis
have also been well articulated in this literature which

*Corresponding author. Email: mooreva@tcd.ie

© 2013 Taylor & Francis

78 V. Moore and S. Cahill
has demonstrated the positive outcomes accruing to
both the individual, the family, the health care profes-
sionals and to society at large (see, e.g. InterDem
papers particularly de Lepeleire et al., 2008).
However, despite this consensus, many people with
dementia fail to get diagnosed until late in the illness
trajectory (Koch & Iliffe, 2010a). The reasons for this
are several and include (i) the vague/diffuse symptoms
of dementia (Downs, 1996); (ii) reluctance by the
person and/or family member to seek help (de
Lepeleire, Heyrman, & Buntinx, 1998); (iii) the
impact the diagnosis has on the individual (Cahill
et al., 2006) and (iv) GPs’ own reluctance due to lack of
confidence, stigma and medical uncertainty (Vernooij-
Dassen et al., 2005).
It has been suggested that this medical uncertainty
and reluctance to diagnose can be minimised by the
dissemination and use of clinical practice guidelines for
GPs and specialists (Fortinsky, 2008), and by educa-
tional programmes designed to tackle ‘therapeutic
nihilism’, increase clinical knowledge and bring about
attitudinal change. Koch and Iliffe (2010b) suggest that
rather than simply increasing clinical knowledge,
educational interventions for GPs’ should ideally be
attitudinal, focusing on GPs’ perceptions of their
suitability and ability to diagnose and the value of
doing so in a timely way. Downs and her colleagues
(2006) demonstrated the effectiveness of decision
support software in GPs’ surgeries and of practice-
based workshops for improving detection rates of
dementia in primary care.
It is also argued that since symptomatic patients
may not seek out help for their memory and cognitive
problems, a proactive approach, i.e. GPs being more
on the alert for signs and symptoms of dementia in
particular high risk groups is needed. However, it is
argued that GPs tend to work in a reactive rather than
proactive way (Iliffe et al., 2005) and problems also
exist with how GPs recognise symptoms and diagnose
dementia. Usually, an index of suspicion is needed to
construct a diagnosis and generally this suspicion is
triggered by symptoms within the patient’s story that
the GP can detect if upskilled in the area but is unable
to pick up if he or she is not aware of the early signs of
dementia (Iliffe et al., 2005). There is a consensus in
this literature on the benefits of dementia training
which is by and large welcomed by most GPs (Hansen
et al., 2008; Jedenius, Wimo, Strömqvist, & Andreasen,
2008; Turner et al., 2004; Waldemar et al., 2007).
Disclosure patterns to patients vary considerably
cross-nationally and case by case. For example in one
Irish study, 41% of the GPs surveyed reported that
they never or rarely disclosed a dementia diagnosis to
their patients (Cahill et al., 2006). In contrast, in a
Swedish study, similar numbers, 39% of GPs, reported
they would always or often tell their patients their
diagnosis (Ólafsdóttir, Foldevi, & Marcusson, 2001).
This body of literature also shows that when disclosing
a diagnosis, some GPs tend to avoid using the words
‘dementia’ or ‘Alzheimer’s disease’ and instead speak
covertly about the illness using euphemisms such as
‘memory problems’ or ‘confusion’ (Lecouturier et al.,
2008; Woods et al., 2003).
In an earlier InterDem paper (2005), Vernooij-
Dassen and her colleagues provide a very useful analysis
of the stigma of dementia and argue that stigma is an
important factor causing delays in the recognition and
diagnosis of dementia in primary care. They contend
that dementia creates a double stigma or negative
labelling; the stigma of both (i) being old and (ii) having
a psychiatric disorder. Iliffe et al. argue that this stigma
is rife among GPs, because of their ‘. . . fear of the disease
itself, their embarrassment about discussing memory
loss, functional losses and incontinence, and their
reluctance to damage long-standing relationships by
giving bad news . . .’ (Iliffe et al., 2005, p. 4) are all
obstacles for the GP in recognising and diagnose
dementia. Along with other issues we were interested
to find out to what extent dementia was considered a
stigmatising illness for GPs in Ireland and Sweden.
Methods
Based on our perusal of this literature the key research
questions formulated for this study were:
(1) What are the attitudes of Irish and Swedish
GPs’ to the diagnosis and disclosure of
dementia?
(2) What under-graduate and post-graduate train-
ing in dementia have these GPs undergone?
(3) What are the post-diagnostic support services
available to both sets of GPs in both countries?
(4) To what extent do GPs regard dementia as
stigmatising?
Sampling
As the researchers had no direct access to a GP
database from which to draw a sample, subject
recruitment was undertaken through informal net-
works, such as friends and colleagues. Once identified,
three GPs were contacted by phone, advised about the
study, and about the topics to be covered during the
interview and each was invited to participate. Through
these informal connections, the already established
contacts led to ‘snowball sampling’, where participant
GPs were asked to suggest additional colleagues
(Babbie, 2008), who were subsequently contacted.
This mirrors the sequence of snowball sampling
where informants, in this case informal networks,
were accessed to identify cases that would potentially
participate in the study (Kemper, Stringfield, &
Teddlie, 2003).
Snowball sampling can also be described as picking
subjects that feature the necessary characteristics, (in
this case GPs likely to be dealing with patients with
possible dementia) and through their recommenda-
tions finding other subjects with the same character-
istics (Gobo, 2007). The researchers were aware of
 Aging & Mental Health 79
some of the limitations of snowball sampling, chiefly
bias, since participants came from one network, and
may have similar experiences which may skew the
findings (Bloch, 2004). However, this bias can be
avoided by having a number of starting points for
snowballing (Bloch, 2004), which this study achieved.
In-depth interviews
Nine in-depth semi-structured interviews were con-
ducted with GPs in Ireland and in Sweden. All
interviews except one were conducted face-to-face
and audiotaped using a Dictaphone. Each took
approximately 45 minutes to conduct. Participants
were given a Participant Information Sheet and each
agreed to sign a consent form.
The interview schedule
Building on the literature an interview schedule was
designed. This schedule was divided into six main
sections: (i) socio-demographic profile; (ii) diagnosis;
(iii) disclosure; (iv) training; (v) post-diagnostic services
and (vi) stigma. This layout provided structure while
allowing as much flexibility as possible within the
different topics. The interview schedule ended with the
question: ‘Do you think dementia is still a stigmatising
disease and if so why?’. This question was placed at the
end as it was believed that opening the interview with
the question might lead GPs to be overly ‘politically
correct’, and that it might inhibit their describing their
experiences.
Data analysis
The methodological approach used to analyse the data
collected was qualitative thematic analysis (Seale, 2004).
This approach treats the participants’ accounts as a
source to understand the reality or experiences that they
share with the researcher (Seale, 2004). All interviews
were transcribed verbatim by the researcher, and read
and re-read to ensure familiarity with the interviews
(Denscombe, 2007) and to ensure no subtleties had been
missed. The interviews were then coded by the Swedish
researcher who masters both languages. Where discrep-
ancy in interpretation arose, coding was cross-checked
by the second, English-speaking researcher. Points and
issues that emerged were highlighted; these were then
organised into categories and themes were identified.
The material was searched for the participant’s point of
view and themes that emerged as being of importance
(Daly, Kellehear, & Gliksman, 1997).
The study received ethical approval by the Trinity
College Dublin School of Social Work and Social
Policy’s Research Ethical Approval Committee. One
major ethical consideration was the cross-national
nature of the study and the use of two languages for
the interviews. One of the researchers is a Swede living
in Ireland and speaks English and Swedish fluently;
thus, there was no risk that either group of GPs would
feel constrained by not being able to express themselves
in their first language. However, all translations
required careful attention to the linguistic nuances
and variances present.
The sample
Six GPs were based in major urban centres, two in
rural towns and one in a rural village. Of the nine GPs,
three were male and six female. Although not inten-
tionally matched, the two groups of GPs were similar
both in terms of practice size, age profile (mean age
was 53), and the percentage of older patients in
attendance at their surgeries. For example, in
Sweden, patients over the age of 65 made up an
average of 26% of the GP practices, while for the Irish
GPs the number was 25%. Irish GPs had a mean age
of 51, and had been in practice for on average 24 years
whilst Swedish GPs had a mean age of 54, and were in
practice for 22 years. All but one GP worked in a
shared practice. None of these GPs had any special
interests and/or experience with elderly care, for
example working with patients in nursing homes.
Results
Themes emerging from data analysis were grouped as
follows: (i) symptoms and diagnosis; (ii) disclosure –
avoiding the word; (iii) education; (iv) quality of
services and (v) stigma.
(i) Symptoms and diagnosis: Findings show that
both Swedish and Irish GPs were not proactive in
making a diagnosis. Both groups claimed they relied
on their patients’ or family members’ to report their
concerns and suspicions about dementia. Interestingly
whilst all GPs believed that early diagnosis was
important, several stated that they themselves were
reluctant to diagnose early, as they felt that a diagnosis
of dementia was very difficult to give and had
profound implications. This finding was the case for
both the Swedish and the Irish GPs.
. . . I’m a bit reluctant to diagnose it early on, although I
know there’s posters out there saying pick it up early, but
I’m not, I’m not 100% sure that telling a person that
they have dementia is any benefit to them . . ..
Irish GP, aged 48, urban-based
[Interviewer: ok, and generally what symptoms would
make you suspect dementia in a patient?]
The patient speaks about memory problems.
[Interviewer: mmm, ok and sometimes if they don’t
mention it themselves, but you can suspect they have
dementia yourself, does that happen?]
Well, in that case it is the family that raise the alarm,
about g family and ¼ the patient themselves
Swedish GP, aged 58, rural-based
. . . I think it’s also very important not to scare people
witless in maybe what could be the very early stages of
dementia . . . and you don’t want to plunge someone into
a depression, they are going to go completely mad in
80 V. Moore and S. Cahill
six months, you have to be very sensitive to how someone
is going to take any information . . . .
Irish GP, aged 52, urban-based [1]
(ii) Disclosure – avoiding the word: Only three GPs
(one Irish and two Swedes) claimed they would normally
talk openly about dementia in disclosing the diagnosis to
their patients. When dementia was suspected, and even
after a clinical diagnosis was confirmed, most GPs (six
out of nine) tended to explicitly avoid using the word
‘dementia’ in conversation with their patients:
If I suspect, then I probably don’t say ‘dementia’, but I
say a memory disturbance of some kind, because it’s so
charged, the word ‘dementia’ and ‘Alzheimer’s’ and all
those . . . .
Swedish GP, aged 42, urban-based
. . . well, you, you usually, possibly talk about memory
disturbances, that you have a memory disturbance and
now you will get medication that can slow this down and
maybe even to some extent improve the memory . . . you
have to adjust the information you give after who it is
and how receptive they are . . . .
Swedish GP, aged 56, urban-based
Transcripts reveal that throughout the entire process
from the time a cognitive impairment was first noticed
to the stage where medication was being prescribed,
great lengths were taken by the majority of GPs to avoid
using the words Alzheimer’s disease or dementia. This
avoidance pattern was noted in all but two interviews
and in all aspects of GP patient interaction.
I never use the word ‘dementia’. I tell them you’re a bit
forgetful, and that you might need help just to make sure
that that forgetfulness doesn’t get any worse, that’s
all . . ..
Irish GP, aged 48, urban-based
[Interviewer: ok, and so when the dementia has been
diagnosed . . . how would you proceed?]
With the actual patient? Oh, I think I wouldn’t break it
directly, no, I’m afraid not . . . [mentions a previous
patient] . . . I don’t, I’ve never said it to him directly, you
know, ‘‘You have’’, no, I’ve never said that, I don’t think
I would have been able to say it to him . . . .
Irish GP, aged 42, rural-based
(iii) Education: In response to two different ques-
tions asked about specialist dementia training, results
showed that only two out of the five Irish GPs,
compared with three out of four Swedes had ever
received any under-graduate dementia training.
Interestingly, in relation to post-graduate training, all
of the Swedish GPs were receiving on-going profes-
sional training in dementia from their local municipal-
ities whilst only one Irish GP received similar training.
The Swedish GPs generally were of the view that more
training would be beneficial.
yes [it would be beneficial] I mean it is us who
completely do the basic cognitive examination, it is
with us that it happens . . . we can only count on help
from the geriatrician when we have gotten quite far . . . .
Swedish GP, aged 62, urban-based
The Irish GPs tended to be more equivocal in their
attitudes to training:
[Interviewer: and would you think it would be bene-
ficial to receive any dementia-specific training?]
Possibly, yes
Irish GP, aged 42, rural-based
. . . amm, well I suppose, I feel comfortable enough I
guess in the diagnosis, but it’s really accessing services
that is the real problem
Irish GP, aged 52, urban-based [2]
Oh we are always open to education and everything is
changing, things are changing all the time, both in the
diagnosis and the managing and the support structures,
so we have to keep on top of all of these areas . . . .
Irish GP, aged 52, urban-based [1]
The hesitancy and tentativeness about the need
for specialist GP training on the part of Irish GPs
is interesting given that they were very aware that
the prevalence of dementia was on the increase in
Ireland:
. . . we are going to encounter an awful lot more, I have
an awful lot of patients with dementia, well of the
patients, considering I have a small practice . . . .
Irish GP, aged 48, urban-based
. . . I suppose with the way things are meant to go in the
future, I think it would probably be more important,
statistically things are going to increase, the problem is
going to increase
Irish GP, aged 63, rural-based
(iv) Quality of services: Data analysis showed that
whilst all GPs acknowledged that post-diagnostic
community care services, and in particular public
health nursing, caregiver support, home help, and
respite care were important services for people recently
diagnosed with dementia and their family caregivers,
Irish GPs were extremely negative about the adequacy
of community-based services.
. . . we also have access to through the health centre to
speech therapy, little or no physiotherapy, I find that a
particular problem, little or no, no I may say, no speech
and language therapy, and extremely limited home help
services, you could get a couple of hours if that a day,
and also costs of supplementing the service on top of
what the HSE provides is extremely tough for a lot of
families and patients . . . .
Irish GP, aged 52, urban-based [2]
These Irish GPs also spoke about the rhetoric of
community care policy which in Ireland is not under-
pinned by legislation:
. . . if the amount of money that was put in to making
reports and publishing papers were put into actually
giving one dementia nurse to an area . . . it’s lip service
and it has always been lip service, and as long as the
HSE continue in their present form it will always
continue to be lip service because the last people on
their priority list are the patients and the clinician
and the support structures [pauses] they don’t care,
they don’t care about public health nurses being
overworked, they don’t care about patients not having
 Aging & Mental Health 81
services [pauses] it’s very frustrating, and there is a
lot of people out there who have paid taxes all their
lives and they deserve a decent health service in their
latter years who don’t get it
Irish GP, aged 52, urban-based [1]
I think if you have a very active and progressive family
member [the services] are fine, but if you don’t, if you
have somebody who has really little ability to obtain
those services, you won’t get them, you get nothing
without pushing, because the public health burse is
overstretched . . . .
Irish GP, aged 48, urban-based
In contrast, in Sweden where universal health and
social care services are available, Swedish GPs were on
the whole very satisfied with the quantity and quality
of community care services available:
I am impressed, I am very impressed by the municipal-
ities’ efforts, very impressed [pauses] but you can
always wish for more, huh [laughs]! But I don’t know,
there is as much done as possible for people with
dementia in this time . . . .
Swedish GP, aged 58, rural-based
yes, I think it is, pretty optimal, I don’t know what you
could do additionally, there is a kind of care structure
there that I think works pretty well
Swedish GP, aged 56, urban-based
(v) Stigma: In response to a question asked
about stigma and dementia, all but one GP agreed
that dementia was to some extent a stigmatising
illness. The dominant hyper-cognitive culture in
which we all live which places undue emphasis on
economic productivity and mental capacity was
reflected in the words of several of the GPs, both
Swedish and Irish:
. . . dementia might be a sign that you are stupid in some
way, that they don’t fully understand that it is an organic
change . . . .
Swedish GP, aged 62, urban-based
. . . an intellectually very active person who then notices
that he is falling away, remembering, memory, he thinks
it is very, very bothersome, the wife . . . [has] to start to
be ashamed of him, you’d rather sweep those things
under the carpet . . . .
Swedish GP, aged 58, rural-based
well, anything that I suppose that affects your social
abilities is going to stigmatise you to a degree . . . but I
mean it does contribute to being socially isolated,
because you are not such a socially performing animal
anymore . . . .
Irish GP, aged 52, urban-based [1]
Stigma was also attributed to the fact that dementia
was seen as a psychiatric condition or mental health
problem, a condition for which the individual was held
responsible and made feel guilty:
. . . anything inside your head is always regarded as a
stigma, it’s regarded as a weakness, a failing in the
family, you know [pauses] but it’s not
Irish GP, aged 48, urban-based
And that whilst people with dementia remain
physically well, they are perceived by some as not
normal because of their cognitive decline:
well, it is that it is such a radical break in your life
pattern really, to be sawed off but yet live, to look like
you are well but you are completely in your own
world . . . .
Swedish GP, aged 56, urban-based
Discussion
Despite all of the GPs in this study unequivocally
claiming that an early diagnosis of dementia was
important, several stated that they themselves were not
proactive in the area and most were reluctant to
diagnose early as they felt that a diagnosis of dementia
was very difficult to give and had profound implica-
tions. This fear of diagnosing and reluctance to become
actively involved in dementia for a myriad of reasons
not least the fear of negative reactions has already been
discussed in the literature (e.g. Cahill et al., 2006;
Downs, 1996; Downs et al., 2006; Fortinsky, 2008;
Koch & Iliffe, 2010a). Interestingly however,
Lecouturier et al. (2008) have argued that catastrophic
reactions are relatively uncommon and indeed, for the
individual and family the benefits of early diagnosis far
outweigh the perceived risks (Downs, 1996; Koch &
Iliffe, 2010b). de Lepeleire’s work along with his
colleagues (2008) argued that in the future harmonisa-
tion of European approaches to dementia diagnosis in
primary care, three core areas needed to be addressed
namely (i) a focus on timely diagnosis, (ii) the
development and implementation of guidelines and
(iii) an identification of appropriate referral pathways
and diagnostic strategies. Whilst the issue of dementia
guidelines was not addressed in this study, it is curious
that even the Swedish GPs, most of whom had
undergone dementia-specific training were still reluc-
tant to become actively involved in diagnosis and most
of them still considered dementia to be a stigmatising
illness.
Findings from this qualitative study are in accor-
dance with the literature (Lecouturier et al., 2008;
Woods et al., 2003) and show that in general, GPs were
also reluctant to talk openly about dementia to their
patients. Even when their suspicions were confirmed,
only three out of the nine (two Swedish GPs and one
Irish) claimed they would use the words ‘dementia’ or
‘Alzheimer’s disease’; the rest reported they would use
euphemisms. In the United States and Canada telling a
patient the truth about a diagnosis of probably
Alzheimer’s disease has for the past decade been
more or less the norm (Post, 2000), but within
Europe disclosure patterns to patients with dementia
vary considerably. For example one Irish study showed
that GPs by and large tended not to tell their patients
their diagnosis, whilst in Scandinavian countries such
as Sweden (Ólafsdóttir et al., 2001) and Norway
(Braekhus & Engedal, 2002) disclosure patterns have
82 V. Moore and S. Cahill
been much higher with as many as two-thirds of GPs in
Norway telling patients their diagnosis. Interestingly a
recent study of German GPs showed that whilst 70%
exhibited positive attitudes to dementia and favoured
an early disclosure, most GPs described the difficulties
they had communicating the news, and said that they
were more likely to tell the news to family members
rather than to their patients. In keeping with our
findings, in the same survey the GPs stated they
avoided using the word ‘dementia’ or ‘Alzheimer’s’ in
discussions (Kaduszkiewicz, Bachmann, & van den
Bussche, 2008). Likewise in countries like Portugal
avoidance of the dementia label is said to be related to
resources since it may militate against access to long-
term care (Iliffe et al., 2005).
It is interesting that all but one of the GPs
interviewed for this study continued to believe that
dementia was a stigmatising illness, since in their view
people associate it with stupidity, insanity, shame and
individual weakness. Curiously none appeared to be
aware that they themselves might also be contributing
to this stigma by virtue of (in most cases) their either
avoiding getting involved in dementia diagnosis or
alternatively using euphemisms when discussing the
illness with their patients. Based on our data, one
might deduce that GPs’ own innate attitudes and
beliefs including fears may have resulted in their
reluctance to get involved in diagnosis lest, if by
becoming involved, they would be forced to confront
the dilemma of either on the one hand having to
convey bad news or on the other having to dissemble to
protect both themselves, and their patients. Since
neither situation was desirable, by not being proactive
these GPs could avoid confronting this dilemma. We
would argue that the relationship between therapeutic
nihilism, stigma and the reluctance to provide an
unambiguous diagnosis (clearly visible in this data)
needs more teasing out in larger scale research studies.
Regarding specialist dementia training, the Swedish
National Board of Health and Welfare has recently
reiterated their efforts to further educate people
working in the care of people with dementia, such as
GPs and nurses, to raise their level of competency and
also to improve their level of satisfaction with their
work (Socialstyrelsen, 2010). In Ireland, whilst calls to
improve the competency levels of GPs and all those
working in dementia care have been made since the
Action Plan on Dementia was first launched in 1999,
recent studies have revealed that up to 95% of
nurses in general hospitals have not received
training in dementia care (de Siún & Manning, 2010)
and up to 90% of Irish GPs surveyed by Cahill et al.
(2006) had never undergone any dementia-specific
training.
What is of interest in our study is the fact that
despite the emphasis on GP training in dementia in
Sweden, Swedish GPs appeared to be not a whole lot
better off in relation to their attitudes and experiences
compared with Irish GPs. It may well be that in
Sweden GP educational programmes are more clinical
than attitudinal and approaches taken place less
emphasis on tackling therapeutic nihilism and chang-
ing ideology and practice. Koch and Iliffe (2010b)
argue that educational interventions for GPs in
dementia should be attitudinal and should focus on
GPs’ perceptions of their suitability and ability to
diagnose and the value of doing so in a timely way.
Perry, Draškovic, van Achterberg, Borm, et al.
(2010) and Perry, Draškovic, van Achterberg,
Lucassen, et al. (2010) found in their study, based on
the EASY-care training programme, that barriers to
diagnosing and disclosing dementia were largely over-
come amongst the 10 participating GPs. They also
found that nihilistic attitudes were partly overcome.
The dementia training programme used by them
consisted of two workshops, individual coaching,
access to an internet forum, and a computerised
clinical decision support system. Its aim was to
improve dementia diagnosis and management and to
stimulate collaboration in primary care. Based on the
literature and our findings, we would contend that a
combination of approaches like these, including
clinical and attitudinal educational programmes may
better address the issue of GP attitudes to dementia.
Another key difference found in this study was in
the area of service supports post-diagnosis where the
Swedish GPs seemed hugely satisfied with the level of
supports available to people with dementia in the
community whilst their Irish counterparts were frus-
trated and dissatisfied. In the past, an argument was
marshalled in Ireland that there was little point in
giving people a diagnosis of dementia when no support
services were available to assist them. However it is of
note in this study that in Sweden where excellent post-
diagnostic support services exist, there was still a
reluctance by some GPs to deal openly and honestly
with the issue; indeed a few took comfort from the fact
that their patients with dementia would be supported
by well-integrated health and social structures, yet
avoided being upfront by calling the illness by its
name – dementia.
Conclusion
The main purpose of this study was to explore the
experiences and attitudes of Irish and Swedish GPs to
diagnosing and disclosing dementia. Despite its explor-
atory nature and very small scale design, a number of
important findings have emerged from the research.
These include the fact that dementia continues to be a
stigmatising illness for most GPs in both countries
some of whom despite education and training retain
nihilistic views and remain unwilling to confront the
diagnosis. Findings also show that Swedish GPs had
more exposure to dementia-specific training, saw the
value in training and were generally very satisfied with
post-diagnostic dementia services available to support
patients, while their Irish counterparts were less likely
to have undergone training, were more equivocal
 Aging & Mental Health 83
about its value, and were very dissatisfied with the
community services available. Curiously, however the
data show that the on-going training available in
Sweden and the excellent community support services
in evidence did not appear to lead Swedish GPs to be
more proactive in terms of early diagnosis and disclo-
sure. Thus, whilst recognising the all-important role
training plays in good dementia care (see, e.g. Downs
et al., 2006; Jedenuis et al., 2008), the findings of this
study lead us to question the content of dementia
training programmes when it comes to changing
values, beliefs and ultimately changing clinical prac-
tice. We would argue that the content of training
programmes for GPs needs to be varied and
approaches to training need to be multi-facetted,
drawing on problem-based learning, role play and
other experiential learning. As noted by Vernooij-
Dassen et al. (2005) educational initiatives need to take
cognisance of not only clinical issues, but the values,
attitudes and experiences of those committed to being
trained. There is also much cultural discrepancy in the
role of stigma in dementia across different countries.
However, if as the literature suggests, the stigma of
dementia remains more rife in countries with more
limited dementia services (Vernooij-Dassen et al.,
2005) including Ireland, Portugal and Spain and
weaker Alzheimer Societies, then special training
efforts need to be put in place in these particular
European countries. Finally, there is a need for a lot
more research to be conducted into gaining a better
understanding of the processes involved in addressing
the overall stigma of dementia at an individual,
community, organisational and societal level.
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