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Mental Health in Family Medicine 2013;10:143–51
# 2013 Radcliffe Publishing
Article
Optimising primary care for people with
dementia
Chris Fox MBBS Bsc Mmedsci MRCPsych MD
Clinical Senior Lecturer in Psychiatry, School of Medicine, Health Policy and Practice, University of East
Anglia, Norwich, UK
Ian Maidment MA DMS DPP BPharm
Senior Lecturer, Pharmacy, School of Life and Health Sciences, Aston University, Birmingham, UK
Esme Moniz-Cook PhD
Professor of Clinical Psychology, Center of Dementia Research and Practice, Humber NHS FT, Willerby, UK
Jacquie White PGCE BSc RMN
Senior Lecturer/University Teaching Fellow, Faculty of Health and Social Care, University of Hull, Hull, UK
Jochen René Thyrian PhD Dip-Psych
Research Scientist, German Center for Neurodegenerative Diseases (DZNE), Greifswald, Germany
John Young MBBS MRCP MSc FRCP MBA
Professor of Elderly Medicine, National Clinical Director for Integration & Frail Elderly, NHS England,
Bradford Institute for Health Research, Bradford, UK
Cornelius Katona MD FRCPsych
Honorary Professor, Department of Mental Health Sciences, University College London, London, UK
Carolyn A Chew-Graham MD FRCGP
Professor of General Practice Research, Primary Care Sciences Research Centre, Keele University, Keele, UK
ABSTRACT
This review considers key areas in primary care
regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are
considered. In addition, the relevance of nonmedication approaches for dementia in primary
care, which aim to enhance or maintain quality of
life by maximising psychological and social function in the context of existing disabilities, is
deliberated. Finally, key issues about primary
care medication management are considered, and
relevant therapeutic strategies with recommen-
dation for a collaborative approach that improve
outcomes by linking primary and secondary
healthcare services – including general practice
and pharmacy – with social care needs are
weighed up. A key aspect of such a collaborative
approach is to support informal carers in
optimising medication.
Keywords: dementia, diagnosis, medication, primary care, psychosocial
Optimising primary care for
people with dementia
The theme of World Mental Health Day 2013 is
‘mental health and older adults’. Keeping with this
theme, this paper reviews the current key issues
surrounding primary care for people with dementia
(PWD).
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C Fox, I Maidment, E Moniz-Cook et al
Dementia and primary care
Dementia is one of the leading causes of disability
among older people and its prevalence doubles
every 20 years with costs estimated at 1% of global
gross domestic product. The needs of PWD are
chronic and cumulative and require support from
health and social care as well as from family caregivers or carers.
The societal impact of dementia is enormous1 and
the benefits of prioritising earlier recognition of
patients have been well rehearsed.2 These include
an anticipation of the future needs of patients and
families and access to early interventions. The role
of psychosocial interventions and the use of medication in primary care for PWD offer significant
benefits in improving care.
3 Incentives (Table 1): incentives are not sufficiently
embedded in education16 and there is a failure of
targeting incentives in healthcare.17
4 Access to ongoing care: a lack of access to resources,
for example social services and third sector services.
In primary care there is a need to develop training in
assessment so that clinicians are more aware of
dementia to deliver a timely diagnosis.18 Focussing
on practitioner knowledge has shown that primary
care recognition can be enhanced; however, this
does not always result in greater adherence to practice guidelines.19 Education without a practitioner
needs assessment, otherwise facilitation of system
change does not improve performance or health
outcomes 20 and it is suggested that small group
education is important.21 A ‘whole system’ approach
has been advocated to improve self-management of
long-term conditions, but interventions have limited impact on patient outcomes.22
Effective diagnosis
The diagnosis of dementia can be delayed by the
insidiousness of the symptoms and the perceptions
by both patients and general practitioners (GPs) that
it may be just a sign of normal ageing.3 General
practice is usually the first point of contact for
patients with memory problems or other symptoms
of dementia; however, GPs appear reluctant to use
brief cognitive tests and to refer patients for early
assessment.3 In UK practice, the early recognition
and diagnosis of dementia by GPs is variable, with
widespread underdetection reported.4,5 About 30%
of older people report concerns with their memory8
with between 40% and 80% of dementia cases
undiagnosed in primary care settings, which consequently go untreated.6,7
Primary care clinicians and caregivers often fail
to recognise and respond to symptoms of memory
problems,9 but there is evidence that people want
earlier diagnosis,10 with younger professionals perceiving its worth11 and the National Dementia
Strategy emphasising the importance of early diagnosis.12
The barriers to the diagnosis of dementia can be
considered to be the following.13
1 Practitioner knowledge and attitudes: a lack of confidence and associated risk averseness, therapeutic nihilism, negative attitudes towards the
potential benefits of detecting and managing
dementia, paternalistic attitudes and believing
that people with dementia do not wish to know
their diagnosis.14,15
2 Organisation or system failures: the failure of organisations providing clinical care to prioritise
the diagnosis of PWD.
Screening versus case finding
The North of England Evidence Based Dementia
Guideline Development Group states that ‘population screening for dementia in the over 65s is not
recommended; a case finding approach is recommended’. It makes the recommendation that ‘general practitioners should consider using formal
cognitive testing to enhance their clinical judgment’.23 However, the development group fails to
recommend which tests to use and how often to use
them throughout the elderly population at risk.
Although this group, despite its name, makes recommendations based on the clinical opinions of
GPs, recommendations based on evidence are given
more weight by most US organisations.24
Case finding and diagnostic tools
A number of simple tools are available for use in the
community to make an initial assessment of a
patient’s cognitive function.25 The most commonly
used cognitive assessment tool is the Mini-Mental
State Examination (MMSE);26 marked out of 30, a
score of less than 25 is suggestive of dementia.
However, this examination can take up to 20 minutes to complete and may not be practical for use
within a primary care consultation, which is usually
allocated just 10 minutes. Additionally, costs can
be involved, which is a disincentive for using it.
The General Practitioner Assessment of Cognition
(GPCOG),27 and two other cognitive screening tests,
the Mini-Cog Assessment Instrument 28 and the
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Optimising primary care for people with dementia
145
Table 1 Primary care reimbursement systems17
Country
Predominant reimbursement
mechanism
Pay-for-performance
Australia
Fee-for-service
Practice Incentives Program (PIP)
Service Incentive Program (SIP)
Canada
Fee-for-service majority
Some states mixed salary/capitation
England
Capitation
Quality and Outcomes Framework
(QOF)
Germany
Fee-for-service
The Netherlands
Capitation
New Zealand
Subsidised services: capitation
Private services: fee-for-service
Sweden
Salary
USA: Medicare
Fee-for-service
Physician Group Practice
Some states considering capitation
Demonstration (PGPD)
USA: non-Medicare
Insurance-based system
60% of commercial health
maintenance organisations (HMOs)
pay-for-performance programme
Memory Impairment Screen (MIS),29 have been
found to be as clinically and psychometrically robust and more appropriate for use in primary care
than the MMSE. The GPCOG is estimated to take five
to seven minutes to complete, with questions for
both the patient and carer to answer, making it more
relevant for primary care physicians.27 An alternative, developed in primary care, is the Six Item
Cognitive Impairment Test (6-CIT), which performs
as well as the MMSE but is easier to use.30 The
addition of a clock-drawing test may also be a useful
quick and simple test for the GP to use.31 A recent
systematic review 32 suggests that if length is not a
major consideration, the MMSE may remain the
best tool for primary care clinicians who want to
make a diagnosis.
Technology platforms such as diagnostic support
aids offer an important solution but need further
research as there are accuracy and reliability issues
with subsequent help-seeking behaviours reduced
due to false–negative (and thus reassuring) results,
or generating unnecessary distress with false–positive results.33
Incentivising care
In the UK, the introduction of the Quality Outcome
Framework (QOF) pay-for-performance system in
2004 should have led to a reduction in variations
in diagnostic rates of dementia, but this has yet to be
demonstrated because of differences in strategies to
improve awareness and detection, and characteristics of secondary care systems.34 The incentive
may not be sufficient to support the time required
and integration is key to manage resources to ensure
a timely delivery.
From 2013, the Department of Health in England
has directed the NHS Commissioning Board to develop a new directed enhanced service (DES) to
improve diagnosis of at-risk patients for dementia.
The purpose of the ‘Dementia Case Finding Scheme’
is to develop a proactive approach to the assessment
of patients who may be showing early signs of
dementia and to support improvements in the early
diagnosis and care of such patients. The following
groups of patients registered with a GP will be offered
an opportunistic assessment to detect early dementia
and refer for diagnosis and management (Box 1).
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C Fox, I Maidment, E Moniz-Cook et al
Box 1 Case-finding of patients under the
DES35
.
.
.
.
Over the age of 60 with cardiovascular disease,
stroke, peripheral vascular disease or diabetes
Aged 40 and over with Down’s syndrome
Aged 50 and over with learning disabilities
Those who have long-term neurological conditions with a neurodegenerative element
such as people with Parkinson’s Disease.
At worst, the diagnosis could lead to stigmatisation and result in feelings of hopelessness and
despair. The role of the clinician and the patient’s
support structure, such as family members, relatives,
friends and other members of the ‘dementiafriendly’ community, will be to mitigate against
this. Certainly, the ethical consequences in a false–
positive diagnosis should be considered. The label
may cause unnecessary worry and this could be
perceived as infringing on the basic medical ethical
principle of non-maleficience, accurately summarised
in the Latin phrase primum non nocere (first, do not
harm).
Opposition to the DES
There has been significant opposition to the introduction of this new initiative including an open
letter to the prime minister and chief medical officer
for England, which was published in the British
Medical Journal in 2012.36 The letter cited a recent
systematic review that found there was insufficient
evidence to show that medical treatment aimed at
modifying cardiovascular risk factors prevents cognitive decline or dementia in the elderly population.37
Other commentators describe the narrative around
the ‘epidemic of dementia’38 and suggest that researchers, healthcare professionals and politicians
are effectively competing for ‘social capital’. Pierre
Bourdieu’s definition of ‘capital’ extends far beyond
the notion of material assets to capital that may be
social, cultural or symbolic.39 In addition, opponents
to a case-finding approach for dementia remind us
that the diagnosis of dementia entangles a plethora
of ethical issues, including overestimating the effects of current pharmaceutical treatment options
and not balancing benefits and harms (side-effects),
underestimating the relatives’ experiences and capacity to care for the person with dementia and
patient autonomy.
It is too early to draw conclusions from this new
initiative yet, either for England or for other countries. If properly evaluated however, and depending
on the outcome, implementation of the model with
incentivising of case finding for dementia might be
considered by other healthcare systems.
Summary
A correct early diagnosis of dementia may be appreciated by patients even without disease-modifying
treatment, and a diagnosis could be valuable since it
allows informed planning for the future.
Psychosocial interventions in primary
care
Psychosocial interventions in dementia are nonpharmacological approaches involving interactions
between people to support cognition, emotion,
meaningful activity, interpersonal relationships and
a sense of control. They aim to enhance or maintain
quality of life by maximising psychological and
social function in the context of existing disabilities.40
For people living at home, the best effects are seen
when interventions are combined to meet the needs
of both the person with dementia and their family
carer,41 although many interventions have a strong
bias towards supporting the family carer.42,43 This
may be due to the huge influence that families have
in the management of a relative with dementia, as is
seen even in the arena of the ‘potential for inappropriate medication usage’, where family carers can
strongly influence the inappropriate use of drugs for
both their relative and themselves.44 Studies in
primary care suggest that supporting the patient
without due consideration of the family can result
in increased carer distress and poorer overall outcomes for both patient and carer.45
Effective psychosocial interventions are usually
multi-component, individualised and targeted to
the context and personal needs of both the patient
and the family.43 In care homes they can involve
wide-ranging components such as the environment
and leadership in the home as well as interventions
that are individualised to meet the particular needs
of the person with dementia.46 A range of individually tailored approaches have been developed,47
including cognitive stimulation, cognitive rehabilitation, reminiscence therapy, emotion-based care
and adaptations from standard psychological therapies such as cognitive behaviour therapy (CBT)
which can be used with the person and/or the
carer48,49 to reframe experiences of dementia and
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Optimising primary care for people with dementia
thus improve quality of life and coping with the
condition. Other approaches include involving pets,
music, dance, exercise and art therapies, although
the evidence for these has yet to be established.
Group-based support in dementia care is an intuitively popular approach that does not come with a
strong evidence base.47 An exception is Cognitive
Stimulation Therapy (CST), an activity and discussion group therapy that aims to improve quality
of life by enhancing cognitive and social functioning.50–52 Originally developed in care homes
and day centres it has now been translated into
wide-ranging community settings with an ongoing
large-scale evaluation.53 In the UK it has been
recommended ‘for all people with mild to moderate
dementia’ (see the NICE Guideline for Dementia2),
although not all PWD want to engage in group
therapy. Psychosocial interventions to help PWD
and families adjust to changing roles and relationships and learn ways to minimise the impact of
dementia are an important focus for those in dementia care.54 Individualised interventions such as
cognitive rehabilitation55 and occupational therapy,56 usually involving family or friends helping
the person with dementia achieve their goals in life,
remain an important avenue for the future of
psychosocial interventions in dementia care. These
approaches can also have components to meet the
needs of the family carer(s).56
The application of psychosocial interventions in
primary care often focus on educational interventions for practitioners,57 although studies of the
quality of care in primary care suggest more psychosocial approaches can be undertaken,57,58 even
though carefully developed quality indicators for
the delivery of dementia care currently exist.59 This
may be due to the paucity of understanding of
psychosocial interventions in community settings.60
Information provision is seen as key to dementia
care support48 but this does not appear to be timely
or tailored to the continuing needs of patients and
their families.61 This may be because of the application of a medical management model,60 where a
social disability framework for delivering support in
primary care is more relevant in guiding dementia
care practice.48,60
Collaborative primary care-based interventions
supported by specialist practitioners and personalised to the individual and/or the family carer show
huge promise. In some parts of the world improvements have been demonstrated in the quality of care
and management of behavioural problems associated with dementia62 and in carer distress.63 These
interventions can also prevent depression in PWD.64
However, translating such evidence for psychosocial interventions into routine practice in both
primary and specialist community care is a key
147
challenge because landmark interventions developed in one setting do not necessarily translate
successfully in other settings.65 This does not mean
that there is no hope for the wide-spread delivery of
psychosocial interventions in primary care. Encouraging examples of specialist support practitioners,
such as health visitors to manage patients and families in primary care exist.66 Furthermore, communication with the GP is valued by older patients; this
influences their quality of life67 and may also enhance the timely uptake of available psychosocial
interventions by PWD.68
Effective medication management
PWD are commonly prescribed complex regimens,
containing both psychotropic and physical medication and effective medication management is a
key element of providing optimal primary care for
PWD.69 The current focus has been on the use of
antipsychotics to treat behaviour that challenges –
also called behavioural and psychological symptoms in dementia (BPSD) – and the National Dementia Strategy targeted a reduction in such usage by
two-thirds.70 However, focussing solely on a single
medication may be counter-productive and could
simply transfer prescribing to other equally inappropriate treatments, including benzodiazepines.71
If treatment for BPSD is required because there is a
risk of harm to the person with dementia or others,
guidelines from the Alzheimer’s Society should be
followed.72 These guidelines recommend a short
course of the only licensed product, the antipsychotic
risperidone, commenced at a low dosage, continuously reviewed and prescribed for up to six weeks.
More generally, effective medication management
in dementia is much broader than just the appropriate treatment of BPSD and support for carers and
wider aspects of iatrogenic disease in dementia is
considered below.
Family members and other informal carers of
older people have a key role in ensuring safe medication management.73 PWD may rely upon informal carers to manage their medication and these
carers …
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