J R Soc Med 2003;96:320-324
doi:10.1258/jrsm.96.7.320
© 2003 Royal Society of Medicine
Dementia: issues in early recognition and intervention in primary care
R T Woods PhD
Esme Moniz-Cook PhD 1
Steve Iliffe MRCGP 2
Peter Campion PhD 3
Myrra Vernooij-Dassen PhD 4
Orazio Zanetti MD 5
Manuel Franco MD 6 INTERDEM (Early Detection and Intervention in Dementia) Group
Dementia Services Development Centre, University of Wales, Bangor LL57
2PX
1
Department of Clinical Psychology, School of Medicine, University of Hull,
Hull HU6 7RX
2
Department of Primary Care and Population Sciences, Royal Free and University
College Medical School, Royal Free Campus, London NW3 2PF
3
Department of Primary Care Medicine and Public Health, School of Medicine,
University of Hull, Hull HU10 6NS, UK
4
Centre for Quality of Care Research, University of Nijmegen, PO Box 9101,
6500HB Nijmegen, The Netherlands
5
Alzheimer Research and Care Unit, IRCCS, Brescia, Italy. 'Centro
S.Giovanni di Dio-Fatebenefratelli', Via Pilastroni 4, 25123 Brescia,
Italy
6
INTRAS, Santa Lucia 19, 47005, Valladolid, Spain
Correspondence to: Dr Steve Iliffe, Department of Primary Care and Population
Sciences, RF & UC Medical School, University College London, Royal Free
Campus, Rowland Hill Street, London NW3 2PF, UK
E-mail:s.iliffe{at}pcps.ucl.ac.uk
 |
INTRODUCTION
|
|---|
Changes in health policy in the UK are creating an experiment
in dementia
care which will be of importance to other societies
and healthcare systems. A
report from the Audit Commission,
Forget Me Not
2002,
1 concludes
that general practices should
make greater efforts to diagnose dementia in its
early stages.
Likewise the National Service Framework (NSF) for Older
People
2 emphasizes
the need for early detection, with an enhanced role
for primary care. A major
challenge to implementation, however,
is the observation that a substantial
minority of general practitioners
(GPs) are unconvinced of the benefits of
early diagnosis. In
the Audit Commision's survey of 8051 GPs in 73 areas of
England,
only 60% agreed that an early diagnosis of dementia was
important—no
change from the proportion in pilot data from 12 areas,
collected
in 1999.
3
Probably, however, GP opinion has become more favourable
since the publication
of National Institute for Clinical Excellence
(NICE) guidance on use of
acetyl-cholinesterase (AChE) inhibitors
for the treatment of Alzheimer's
disease
4—advice
that
may have come too late to have much impact on the full survey.
A common
argument is that, in the absence of effective treatment,
there is nothing to
be gained from early diagnosis. Forget
Me Not 2002 notes that GPs who reported
having received sufficient
training in diagnosis and management were the ones
most likely
to favour early diagnosis; most GPs did not feel that they had
received sufficient training. These findings may in part explain
why nearly
75% of patients with moderate to severe dementia
are unrecognized by primary
care clinicians as having cognitive
impairment.
5 The
Audit Commission
1
points out that, if the
condition is not recognized early, the patient and
family commonly
experience a crisis, with specialist services called in too
late to establish supportive care. More positively, the NSF
suggests that
early diagnosis provides access to treatment,
allows planning of future care
and helps individuals and their
families come to terms with the prognosis.
|
THE PATIENT'S JOURNEY
|
|---|
Models of both the care-giving
career
6 and the
experience
of the person with
dementia
7 emphasize
how the diagnosis of
dementia marks an important transition, from the
uncertainty
and ambiguity of the early cognitive and behavioural change
to a
phase in which the patient adjusts and learns to live
with impairment and loss
of function. Although such adjustments
may be impossible if the diagnosis is
late and arises from
a crisis, a drive towards ever earlier diagnosis has
drawbacks.
Serious obstacles for the GP include diagnostic uncertainty
in the
early stages, their own feelings of embarrassment about
conducting cognitive
examinations and difficulty in communicating
the
diagnosis.
8
Making the diagnosis in the early stages is not always straightforward. The
use of specific tests such as the Mini-Mental State Examination (MMSE) is
often recommended,9
and Forget Me Not 2002 notes that around 40% of GPs report using a specific
test or protocol to detect
dementia.1 However,
if a person in the late 80s is being assessed, the score on such a test may be
depressed by factors such as poor physical health, sensory difficulties,
anxiety, depression, educational level and English not being first language,
as well as by the presence of a dementia. Specialist memory clinics, even with
the benefits of detailed neuropsychological assessment and brain imaging, find
themselves taking a watching brief in certain cases. The diagnosis of dementia
may emerge over six months or a year, as changes in the person's performance
are observed and
monitored;10 in
some people with mild cognitive
impairment,11
dementia takes three years to
develop.12
Secondly, the process of assessment may become confrontational. In the
early stages of dementia, accommodation to or denial of changes in cognition,
functional ability, mood or behaviour are common coping strategies. A
cognitive test such as the MMSE, which may harshly expose the person's
failures and the family's psychological defences, can be experienced as highly
threatening by a person struggling to maintain a sense of competence. Family
conflict can also arise—for example, when a person has been
'brought' to see the GP by a concerned family member and who then
becomes angry for what seems like an act of betrayal. As the person's denial
strengthens, the concerns of the family become more pressing, with the GP
often caught in between and faced with apparently irreconcilable needs. On
other occasions, both the family member (typically an elderly spouse) and the
affected person seem oblivious to the cognitive impairment that is evident to
the GP during a consultation on another medical matter. The couple have made
an adjustment, often downplaying the importance of recent memory and
orientation, with one partner acting as the memory for the
other.13
Thirdly, once the diagnosis of dementia has been made, the patient and
family will have questions regarding the future that are by no means easy to
answer. Even an apparently obvious prediction—such as that a further
decline in cognitive abilities is likely—may be inaccurate since a
substantial proportion of patients show little or no decline for a
period.14 To
communicate a prognosis that is uncertain and likely to be influenced by
numerous factors other than progression of the brain disorder is difficult,
when the aim is to aid planning. Some patients and families will already have
drawn prognostic conclusions on receiving the diagnosis; the very word
Alzheimer's will conjure up a picture of severe impairment.
|
FROM EARLY TO TIMELY RECOGNITION
|
|---|
What then is the way forward? We would argue that there is indeed
a need
for timely detection and diagnosis that will prevent
crises, facilitate
adjustment and provide access to treatments
and support. Clearly, when over
half of a large sample of GPs
who responded to a survey believed themselves
insufficiently
trained to diagnose and manage dementia adequately, it is
tempting
to focus on GP training as a priority. However, the disease
process
is complex and simple approaches such as training in
use of brief screening
instruments have lacked impact in general
practice.
15
Multiprofessional training, amongst practitioners
from different primary care
disciplines, has been received
positively.
16
Obstacles to recognizing and responding to dementia
in general practice are
understood.
17,18
An evidence-based
curriculum designed on learning principles has been prepared
in various
formats
18 decision
support software has been developed
and
tested
19,20
and a randomized trial of different educational
interventions is now
underway.
21
An educational programme of this kind needs to be coupled with ready access
to specialist services (only 60% of GPs surveyed by the Audit Commission in
2002 reported that they had such access) if the dilemmas of early diagnosis
are to be well handled and if AChE inhibitors are to be prescribed according
to the NICE guidelines. Given that dementia is only a small part of a GP's
caseload (perhaps 2 new cases per year in a list size of 2000), training may
be as much about the benefits of diagnosis and indications for referral as
about the mechanics of diagnosis itself. The essential requirement is for
clear arrangements between primary care teams and specialist services
regarding diagnosis, care and treatment, and this is an NSF requirement to be
achieved by April 2004.
The NSF also requires specialist mental health services to work with
primary care trainers to develop training in, inter alia, 'at least one
screen for cognitive impairment'. The prominence given by the NICE
guidelines to the MMSE in defining suitability for the prescription of the
AChE inhibitors might reinforce a temptation to recommend this much used but
much criticized measure. The influences of age, educational level and social
class on MMSE scores have been
well-documented,22
and in community samples this instrument gives a high false-positive
rate.23 It mixes a
wide variety of items, and two patients may achieve identical scores with
completely different cognitive profiles and with quite different implications.
Several studies have demonstrated that much briefer tests have equivalent or
better levels of validity. These typically include a new learning test (e.g.
recalling a name and address), orientation items and a simple concentration
task. The 6-item Cognitive Impairment Test (6CIT) is a good example of a brief
test likely to be more acceptable in the primary care context than the
MMSE.24 However,
the utility of cognitive screening will be much enhanced if it is combined
with other assessments such as history of cognitive and behavioural change
from a third
party.25,26
DSM-IV criteria for dementia specify that cognitive changes have to be
sufficient to affect day-to-day behaviour; thus it is important to explore
whether there have been changes in abilities such as managing money and
planning
activities.27
A broader procedure for the recognition, early detection and diagnosis of
dementia takes into account the history of consultations with the
GP,8 perhaps over a
considerable
period.10
|
DISCLOSING THE DIAGNOSIS
|
|---|
There has been a large change in attitudes to communicating
the diagnosis
of dementia. Whilst family caregivers are nearly
always told the
diagnosis,
28 the
affected person is often
not, even if the dementia is
mild.
29,30
Furthermore, when
people with dementia are told what is wrong, it is more
often
expressed in terms such as 'memory problems' or
'confusion'
than in medical terms such as Alzheimer's
disease.
31 The NSF
(para. 7.39) asserts 'treatment of dementia always involves
explaining
the diagnosis to the older person and any carers'.
This is clearly an
area where all the professionals involved,
including those in specialist
services, will benefit from skill
development. Information must be geared to
the individual,
taking into account his or her perception of the difficulties.
In many instances, disclosure of the diagnosis will be a process
rather than
an event,
32
enabling the person to absorb and
assimilate the information at a suitable
pace. A dialogue that
allows the person and family to plan ahead for potential
eventualities,
whilst function, competence and self-esteem are maintained in
the present, contributes importantly to adjustment. Even the
person who copes
by living one day at a time can be encouraged
into contingency planning by the
knowledge that the outcome
is uncertain rather than inevitable.
|
PSYCHOSOCIAL INTERVENTIONS
|
|---|
Although the AChE inhibitors represent a step forward in treatment
and
management of dementia, they are only part of the available
options. Indeed,
many people with dementia do not fall within
the NICE guideline definitions
(not having Alzheimer's or being
too impaired), or do not respond (the number
needed to treat
for one person to benefit is typically between 3 and
7).
33 A range of
psychosocial approaches can be offered, primarily
targeted at the family.
Although the evidence on interventions
to support families is
mixed,
34 the
conclusion from major
studies is that a combination of family meetings and
peer support
is effective in reducing care-giver strain and delaying
institutionalization,
35,
36,
37 and that the best
outcomes are achieved by multidimensional
interventions individually tailored
to carer
needs.
38,39
Cognitive
rehabilitation—using for example memory aids and
training—has
been applied with promising results in mild/moderate
dementia.
40 There
is evidence that cognitive stimulation improves cognitive
function,
41 and
reports of a randomized controlled trial indicate
that memory rehabilitation
adds to the efficacy of AChE inhibitors.
The emotional adjustment of the person with dementia is probably no less
important than cognitive function itself. Cognitive and behavioural therapies
can aid adjustment to the diagnosis and improve depressed
mood.43,
44,
45 Increased awareness
of these psychosocial interventions will encourage their further commissioning
and development. Memory clinics provide an excellent setting for their
implementation.46
|
MEMORY CLINICS AND PRIMARY CARE
|
|---|
There are already suggestions that carers benefit when a memory
clinic
provides feedback on the assessment, when family conferences
are
offered,
47 or when
sharing of the diagnosis is followed
by a home-based psychoeducative and
skills training
intervention.
44
Memory clinics that offer only access to pharmacological treatments
are
missing an opportunity to offer individual support that
can prevent future
distress for both patient and
family.
32,44
Memory clinics at the interface of primary care could also
allow research in
people with minimal cognitive
impairment,
11 which
affects 50% of older
people
48 and has
been associated
with excess
mortality.
49,50
There remains scope for memory
clinics to develop liaison intervention within
primary
care,
32,44
and this has already occurred with the AChE inhibitors, where
some services
have established shared-care protocols with GPs.
Establishment of liaison
memory clinic services in primary
care might encourage the timely detection of
dementia by GPs,
especially if the services embraced the full range of
rehabilitative
and support packages outlined above.
|
CONCLUSIONS
|
|---|
Meeting the expectations about dementia care raised by the NSF
will be
difficult for general practice, and memory clinics
may help GPs to achieve
timely recognition and intervention.
Memory clinics are most effective when
they have close working
relationships with primary care.
Note Other members of the INTERDEM group are Dr Linda Clare (UK); Professor
Frans Verhey (The Netherlands); Geraldine Kenny (Ireland); Professor Jan De
Lepeleire (Belgium); Inge Cantegeil-Kallen (France); Dr Barbara Romero
(Germany); Dr Ramiro Verissimo (Portugal). This paper was drafted at an
INTERDEM meeting co-funded by the European Commission.
|
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TOP
INTRODUCTION
THE PATIENT'S JOURNEY
