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Dementia care. Part
2:
understandingand managing beiiaviourai chaiienges
Emma Ouldred, Catherine BryantAbstract
Management of dementia should focus on the maintenance offunction and independence for the person with the disease. Non-pharmacological interventions to manage dementia includereality orientation, aromatherapy and validation therapy. Non-pharmacological ways of managing challenging behaviour arerecommended in current guidance. Drug treatments, which maystahiUze the symptoms of Alzheimer's disease or slow down furtherprogression for a time, have heen availahle in the United Kingdomsince 1997 and may help some people with dementia. There are highlevels ofstress,distress and psychological illness in family caregivers ofindividuals with dementia, and practitioners are well placed to signpostcarers to appropriate support organizations.
Key words:
Girers • Challenging behaviour • Dementia
Emma Ouldredis DementiaNurse Specialistand CatherineBryant isConsultantPhysician, King'sCollege HospitalNHS Trust,London
Accepted forpublication:January 2008
P
art 1 of this series on dementia care provided anoutline of recent dementia care guidance and theMental Capacity Act 2005, in addition to givingpractitioners a brief overview of
the
different formsof dementia, the assessment process, and how to differentiatebetween dementia, delirium and depression.This article explores the management of dementia (focusingon challenging behaviour), which includes use of psychosocialinterventions and available drug treatments. Coping strategiesand tips on effective communication are provided. It alsohighlights the need for all practitioners to be aware of thecontribution informal carers make in caring for people withdementia and also to be cognisant of what support is availablefor carers to ensure timely referral to such services.
Person-centred care
One of the aims of management is to promote independencefor the individual and maintenance of fiinction for as long aspossible underpinned by the philosophy of person-centredcare (National Institute for Health and Clinical Excellence[NICE],2006), whereby the person with demetia is seen as anindividual, rather than focusing on their illness and on abilitiesthey may have lost. Instead of treating the person as
a
collectionof symptoms and behaviours to be controlled, person-centredcare takes into account each individual's unique qualities,abilities, interests, preferences and needs (Kitwood, 1997)
Information
Following a diagnosis of dementia both the patient and theircarer are likely to need information and ongoing supportabout the condition and the implications for the future.including the course and prognosis of the condition, availabletreatments, and support available from both voluntary andstatutory organizations. The provision of written information isrecommended and
the
Alzheimer's Society provides
a
variety ofinformation sheets about all aspects of dementia and dementiacare (www.alzheimers.org.uk).
Coordination of care and care pianning
Care for the person with dementia needs to be coordinatedacross both health and social care agencies, and may involvedifferent specialists within the multidisciplinary team atcertain time-points. Ideally care should be coordinated bya case manager. Care plans should address activities of dailyliving (ADLs), which maximize independent activity, enhancefunction, adapt and develop skills, and minimize the need forsupport (NICE, 2006). Care plans should consider:Consistent and stable staffingRetaining a familiar environmentMinimizing relocationsFlexibihty to accommodate fluctuating abilitiesAssessment and care planning advice regarding ADLs andADL skill training from an occupational therapistAssessment and care planning advice about independenttoileting skills. If incontinence occurs all possible causesshould be assessed and relevant treatments tried beforeconcluding that it is permanentEnvironmental modifications to aid independent functioning,including assistive technology, with advice from anoccupational therapist and/or clinical psychologistPhysical exercise, with assessment and advice from aphysiotherapist when neededSupport for people to go at their own pace and participatein activities they enjoyThe needs of carers.
Cognitive stimuiation
Current guidelines recommend that all people with mild tomoderate dementia are offered cognitive stimulation, and theeffects may add to the effects of drug treatment (NICE, 2006).Cognitive stimulation can be defined as engagement in a rangeof activities and discussions aimed at general enhancement ofcognitive and social flinctioning (Clare and Woods, 2004). Itmay occur informally through recreational activities, formallythrough group programmes that are designed to stimulate orengage people with dementia, or through training exercisesdesigned to address specific cognitive fianctions. Cognitiverehabilitation programmes are usually individually tailored andtarget specific goals (Clare
and
Woods, 2004).
242
British Journal of Nursing, 2008,Vol 17, No 4
 
NEUROSCIENCE NURSING
Pharmacological interventions
Drug treatments
for
Alzheimer's disease
There
is
currently
no
known cure
for
Alzheimer's,
but
there
are
drug treatments available (cholinesterase inhibitors[ChEIs]), which
may
stabilize
or
slow down
the
progressionof
the
disease. They work
by
helping
to
stop
the
depletionof
the
chemical neurotransmitter, acetylcholine (deficiencyof acetylcholine occurs
in
Alzheimer's
and is
related
to
bothcognitive
and
non-cognitive symptoms)
(Figure
1)
(Franciset
al,
1999). ChEIs
may
help cognitive symptoms, such
as
memory loss,
and
patients
and
carers might report
a
positiveeffect
on
activities
of
daily living, behaviour
and
mood. Theyare effective
in the
mild
to
moderate stages
of
disease. Thereare three drugs currently available
in the
United Kingdom(UK): Aricept®, Exelon®
and
Reminyl®. Common side-effects include anorexia, diarrhoea
and
stomach cramps. Rareside-effects include nightmares
and
increased confusion.
Not
all individuals with Alzheimer's wOl respond
to
treatment
- a
third will show improvement, a third will
not
deteriorate
and
a third will have
no
response
and
continue
to
deteriorate(Overshott and Burns, 2005). ChEIs should only be prescribedand monitored
by
specialists
and the
drug stopped
if
it
is
feltnot
to be of
benefit
to the
patient.Memantine
is
licensed
in the UK for
moderate
to
severedementia. Memantine blocks
a
neurotransmitter, glutamate,which
is
released
in
excessive amounts when brain cells
are
damaged by Alzheimer's
{Figure
i)
(Danysz
et
al, 2000).NICE (2006)
has
recently issued guidance regarding
the
availability
of
ChEIs
on NHS
prescriptions.
It
recommendsthat these drugs should only
be
prescribed
to
people withmoderate Alzheimer's. NICE does
not
recommend
the
use
of
memantine except
as
part
of
well-designed clinical trials.
Treatment for vascular dementia (VaD)
Currently ChEIs
are not
licensed
for the
treatment of VaDin
the UK.
However,
if
the clinical picture suggests
a
mixedform
of
dementia then they may
be
considered. Modificationof vascular vascular risk
is
widely recommended
for the
management
of
vascular disease although long-term studiesdirectly addressing effect
on
cognition
are
lacking (NICE,2006).
The
main
aim of
treatment
for
people with
VaD
is
to
reduce their risk
of
further stroke damage throughmodification
of
cardiovascular risk factors
as
stated below.However,
it is
important
to
remember that modification
of
vascular risk also needs
to be
addressed
in all
people withdementia regardless ofthe dementia sub-type.Modification
of
vascular risk factors includes (Alzheimer'sSociety, 2005a):• Treatment
of
strokes
and
transient ischaemic attacks• Blood pressure control: people with dementia
and
carersshould
be
encouraged
to
comply with anti-hypertensivemedication
and
have their blood pressure checked regularly• Management
and
treatment
of
hypercholesterolaemia: thismay
be
achieved through manipulation
of
diet alone
or in
combination with
the
prescription
of
a
statin• Modification ofalcohol intake: people with dementia shouldbe advised to drink in moderation,
i.e.
no more than two unitsofalcohol
per
day
(one
unit
is the
equivalent
of
one shot
of
spirit,
a
small glass
of
wine
or
half a pint
of
beer/lager)
Figure 1. The action of cholinesterase inhibitors
on
acetytcholine (a); and memantine
effect
on glutamine
(b).
Cholinergicnerve ending
AcetylcholineAcetylcholinereduced
to
inactive form
by
choiinesteraseChoiinesterase
Postsynaptic neuron
Choii
nesterasehibitorChoiinesteraseGiutamaterecognition siteGiutamateExtracellularCytoplasmBiocked
by
memantine
(b)
NMDA receptor
in
CNS neuron
Smoking cessation: people with dementia should
be
encouraged
to
give
up
smoking. Appropriate guidanceregarding smoking cessation clinics
and
methods
to
give
up
smoking should
be
givenPhysical exercise: people with dementia should be advised
to
exercise regularly, such
as 30
minutes
per
day.
This
does
not
have
to be
intensive
gym
activity
but
could simply mean
a
walk
in a
local park• Diet: advise
to eat a
varied
low
salt,
low fat
diet should
be
given. Referral
to a
dietician may
be
required.
Treatment for dementia with lewy bodies (DLB)
There
is
some evidence that rivastigmine
may
help bothcognitive and non-cognitive symptoms
in
DLB (NICE, 2006).Modification
of
vascular risk factors
is
also important
in
thispatient group.
Ciiallenging behaviour
Challenging behaviour can
be
defined as any behaviour that
is
unpredictable, frequent
and of
long duration, and
is
distressingto
the
individual
or
a
nuisance
to
others
(Table 1)
(Tarbuck andThompson, 1995). Adverse behavioural symptoms associatedwith
the
dementia need
to be
assessed thoroughly
and a
careplan developed with the involvement ofthe individual and their
carer.
Alleviation
of
carer
burden should also
be
considered.Neuropsychiatric and behavioural problems
in
older peoplecan occur
in a
number
of
different conditions, includingdementia, delirium, depression, paranoid states,
and
drug
and
alcohol intoxication. More than 90% of people with dementiadevelop neuropsychiatric symptoms
at
some stage during theirillness (BaUard
and
Howard, 2006)
(Table
2).
These symptomscan be distressing for people with dementia and theircarers,andcontribute
to
caregiver burden. They
are
often
the
precipitantfor admission
to
institutional care (Yaffe
et
al, 2002).Neuropsychiatric symptoms (especially depression and apathy)are also common inVaD.
In
DLB,
the
presence
of
delusions,hallucinations and depression are
a
core part
of
the
disease.Challenging behaviour
is
often attributed to the dementingprocess. However, while changes
in the
brain
can
causebehavioural disturbance
it
is also important
to
consider otherfactors which
may be
contributing
to
distressing behaviour.
British Journal
of
Nursing, 2008, Vol 17,
No 4
243
 
Possible causes
of
challenging behaviour
Background factors
Factors, such
as
personality, leisure
and
occupational activities,and
a
person's habitual
way of
responding
to
stress,
are
important
to
consider;
for
example,
a
person might wanderbecause they were used
to
walking
in a
previous occupation(Monsour and Robb, 1982).
Current factors
These include medical
and
physiological factors, such as pain,hunger, need
for the
toilet, and need
for
exercise.
Emotional state
Consider whether behaviour
has
been triggered
by
emotion,such as boredom (people with dementia have a short attentionspan
but
still require stimulating activities), anger
or
anxiety.
Neuropsychological deficits
Changes within
the
brain
can
cause functional deficits, suchas
an
inability
to
carry
out
complex tasks, which
can
thenlead
to
frustration.
Inability to orientate spatially
Changes within
the
brain
can
affect perception
and
spatialawareness.This may result in
a
patient getting in the wrong bedor
not
being able
to put
their clothes
on in the
right order.
Environmental factors
Environmental factors
can
contribute towards challengingbehaviour especially
in the
hospital setting. These include:• Ward layout• Proximity
to
other peopleLacking control over routine (e.g. bed time and meal times)• Being
in a
strange environmentUnfamiliar tasks, such
as
catheterization
and
blood pressuremeasurement• Sensory stimulation overload:
the
general noise
and
atmosphere of
a
busy ward can be overwhelming to
a
personwith dementia who sometimes find
it
difficult to make senseof their usual home environment (Kerr, 1997).
Table
1.
Examples
of
challenging behaviour
in
dementia
Behaviour
Difficult behaviourAggressive/disruptiveDeficient behaviour
Example
Refusal to'cooperate with therapyVerbai
or
physicai aggression, destroying objects around othersor
self, e.g.
trying
to
pull
out
catheters, rummaging throughiockers, interfering with other people's belongings, wanderingBehaviour may
be
hypoactive, apathetic or withdrawn
Tabie
2.
Prevaience
of
neuropsychiatric symptomsin Aizheimer's disease
• Apathy (loss
of
drive
and
motivation
or
lack feeiing
or
emotion) (50-70%)• Agitation (excessive motor activity that may manifest
as
restlessness, wanderingand agitation) (20-60%)• Depression
and
anxiety (40%)• Psychotic symptoms such
as
hallucinations and delusions (25%)Source: Ballard
and
Howard (2006)
Communication difficulties
People with dementia might not be able to communicate their!needs verbally
due to
word-finding difficulty
or
dysphasia.
i
Behaviour, such
as
calling out, agitation
or
wandering, mightbe
a
way
of
communicating need.
Sundowning
|
In dementia
the
sleep-wake cycle
is
often disturbed with
'
individuals becoming more agitated
or
active
at
night
(in
[
some cases
the
cycle
is
reversed with individuals sleeping
j
during
the day and
awake
all
night). 'Sundowning' refers
to j
behavioural difficulties that worsen towards
the end of the
day, with symptoms including: restlesness, agitation, suspicious
j
behaviour, disorientation, visual
and
auditory hallucinations,
'
less cooperation
and
increased argumentative tendancies.
It
can often
be
worse after
a
move
or
change
in
routine.
j
Although
the
cause
of
sundowning
is
unknown
it
seems
to
result from changes within
the
brain
and may be
linked
to a
lack
of
sensory stimulation after dark (Alzheimer's Australia,2005); there
are
fewer cues towards late evening
and
lessroutine
at
night which may exacerbate confusion. People withdementia tire more easily
and can
become more difficult
to
manage.
This
can
often
be
very stressful
for
carers.
Coping with sundowning
Keep person with dementia active during the morning andencourage
an
early afternoon
nap
Avoid physical restraint, allow person with dementia
to
paceif
safe
to do
so; an evening walk
is
sometimes helpful• Avoid caffeine towards late evening,
and
promote sleep
by
providing
hot
milky drinks
and
gentle music• Some people find
it
reassuring
to
sleep with
the
radio
on
or night-lights• Preparing
the
environment, such
as
closing curtains
and
encouraging
the
person with dementia
to
assist
in
eveningmeal preparation, may promote routine
and
reduce anxietyConsider whether loud noise from television mightexacerbate confusion• Encourage participation
in
activities familiar from earliertimes such
as
card gamesAvoid invasive procedures towards evening
if
possible• Make sure physical needs
are met
such
as
nutrition,hydration, elimination, pain• Exclude physical illness
as a
possible cause
of
sundowning.Management
of
behavioural problems
in
dementia
is
oftenmultifactorial
and
needs
to be
tailored
for the
individualpatient. People with dementia should
be
managed
by
skilledmultidisciplinary teams,
and
psychiatric and/or psychologyexpertise
may be
needed. Delirium
and
depression mustalways
be
looked
for and
treated. Physical symptoms, such
as
pain
or
constipation, should
be
treated. Sensory deficits shouldbe corrected. Good dementia care practice means that
non-
pharmacological interventions should always
be
tried first.Pharmacological interventions should only
be
considered
if
there
is
serious distress
or
risk
to the
patient.
Case Studies
1
and
2
describe unusual behaviour
in
dementia
and
encouragepractitioners
to
consider various possible causes
of
challengingbehaviour
in
addition
to
providing advice
on how to
adoptnon-pharmacological ways
of
managing such behaviour.
244
British Journal
of
Nursing.2008,Vol 17,
No 4
of 00

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