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Martin Eccles a Centre for Health
Services Research, University of Newcastle upon Tyne, Newcastle upon
Tyne NE2 4AA, b Department of Primary Health Care, School of Health Sciences,
Medical School, Newcastle upon Tyne NE2 4HH, c Psychiatry of Old Age
Service, North Tyneside General Hospital, North Shields NE29 8NH, d Centre for
Health Economics, University of York, York YO1 5DD
Other members of the
guideline development and project groups are listed at the end of the
paper. Correspondence to: Professor Eccles
Martin.Eccles{at}ncl.ac.uk
This guideline aims to provide recommendations to assist
general practitioners manage people with all forms of dementia and help
their carers. This is a summary version of the full
guideline.1 The areas covered were developed in
conjunction with the guideline development group. They were felt to
reflect areas that were important in daily clinical practice. The
guideline is for the management of patients with dementia; although it
covers the area of screening instruments, it is not meant to cover the
area of differential diagnosis. All recommendations are for general
practitioners and apply to patients attending general practice with
dementia. The development group assumes that doctors will use their
knowledge and judgment in applying the principles and recommendations
given below in managing individual patients, since the recommendations may not be appropriate for all circumstances. Doctors must decide to
adopt any particular recommendation in the light of available resources
and the circumstances of individual patients. Throughout this guideline
categories of evidence (cited as I, II, or III) and the strength of
recommendations (A, B, C, or D) are as described in previous method
papers and the full version of the guideline.
1 2
A
summary of categories of evidence and strength of recommendations is
given in the box.
Summary points
In general practice, dementia has an incidence of 1.6, a
prevalence of 3.6, and a workload of 7.4 consultations per year
General practitioners should use formal cognitive testing as well as
clinical judgment in diagnosing dementia
The impact of caring depends on factors such as behaviour and affect
more than on the severity of the cognitive impairment
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Search strategy and synthesis |
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The search strategy was carried out using Medline (covering 1966-96), BIDS-EMBASE (1980-96), and PsycLIT (1974-96). Searches were limited to English language studies. We conducted MeSH heading and free text searches in the area of dementia using the terms: meta-analysis, randomised controlled trials, reviews, cohort studies, or case-control studies. The search was backed up by the expert knowledge and experience of group members. The quality of relevant studies retrieved was assessed and the information from relevant papers was synthesised using narrative summary.
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General practice workload |
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The incidence, prevalence, and workload associated with dementia can be estimated from the morbidity statistics from general practice.3 The statistics classify patients with dementia within the group "Senile and pre-senile organic psychotic conditions" (ICD-9 290). Although this includes presenile conditions, these form only a small part of the total. Given an assumed list size of 2000 patients, dementia is associated with an incidence of 1.6 new patients per general practitioner per year, a prevalence of 3.6 patients consulting per general practitioner per year, and a workload of 7.4 consultations per general practitioner per year.
The morbidity statistics also allow us to estimate where the consultations occur. For all conditions, 14% of contacts with patients aged 65-74 years occur as home visits; for patients with dementia the equivalent proportion is 51%. For patients aged 75 years and over, the proportions seen at home are 40% for all conditions and 71% for patients with dementia.
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Prevalence |
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Statements
Mild dementia is difficult to diagnose, therefore it is difficult
to assess its prevalence (II). The older the patient the more likely
the diagnosis of a dementing illness is to be senile dementia of the
Alzheimer type (II). The prevalence of dementia increases with age and
is estimated to be about 20% at 80 years of age (II). The annual
incidence of vascular dementia is 1.2/100 overall person years at risk,
and is the same in all age groups (II). The annual incidence of senile
dementia of the Alzheimer type is 34.3/100 person years at risk in the
90 year age group; the incidence is higher in women than in men (II).
In a third of cases, dementia is associated with other psychiatric
symptoms (depressive disorder, adjustment disorder, generalised anxiety disorder, alcohol related problems) (II). A complaint of subjective memory impairment is not a good indicator of dementia; altered functioning is a more important symptom
(II).4-7
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Strength of recommendation
Directly based on category II evidence or extrapolated
recommendation from category I evidence
C Directly based on category III evidence or extrapolated
recommendation from category I or II evidence
D Based on the group's clinical opinion
Categories of evidence
I Based on well designed randomised controlled trials,
meta-analyses, or systematic reviews
II Based on well designed cohort or case control studies
III Based on uncontrolled studies or external consensus
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Recommendations and important points
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Identifying people with dementia |
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Patient's or carer's history
Statements
As the dementing process progresses, awareness of memory problems
decreases, leading to less reliable histories from patients (II).
People with dementia cannot be relied on to complain of memory
difficulties (II). The short mental questionnaire is a screening tool
that is sensitive to mild dementia. It can be completed by the carer
and may have a useful place in identifying people with dementia (II).
Memory complaints by patients correlate with depression. Carers'
complaints about the memory of their relatives correlate with dementia
(II).8-12
Recommendations and important points
The general practitioner
Statement
The general practitioner's clinical judgment alone compares
unfavourably with the use of formal cognitive testing in the diagnosis of dementia (II).13-15
Recommendation
General practitioners should consider using formal cognitive
testing to enhance their clinical judgment (B).
Short screening tests for cognitive impairment
Statements
The mini-mental state examination can be shortened for use in
primary care with only a small reduction in specificity (II). The
mini-mental state examination may be influenced by verbal fluency, age,
education, and social grouping (II). Four items of the mini-mental
state examination are predictors of dementia: orientation to day, spell
WORLD backwards, recall three words, write a sentence (II). Reducing
the mini-mental state examination to two items
recall and orientation
for place
reduces the specificity only slightly (II). In the clock
drawing test, the accuracy of the fourth quadrant of the clock face
shows the greatest sensitivity (87.5%) and specificity (82.3%) for
dementia (II). Deterioration in four domains of instrumental activities
of daily living are significantly associated with cognitive impairment.
These domains are: managing medication, using the telephone, coping
with a budget, and using transportation (II). The shortened mental test
score has proved statistically significant for discriminating between the normal and the abnormal, those with delirium and those with mixed
dementia and delirium, those with dementia and those with mixed
dementia and delirium, those who are not demented, and those with
delirium (III).16-34
Recommendations
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Physical screening in dementia patients |
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Statement
A small proportion of people with dementia have an underlying
abnormality, and when this is treated cognitive function improves. The
exact number of people thus affected is uncertain because of problems
of study populations (II). People with Alzheimer type dementia do not
complain of common physical symptoms, but experience them to the same
degree as the general population (II).35-48
Recommendations and important points
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Dementia of the Lewy body type |
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Statement
The clinical course of dementia of the Lewy body type differs from
that of Alzheimer's disease, showing clear fluctuations with the
following clinical features: complex visual hallucinations (48%),
auditory hallucinations (14%), paranoid delusions (57%), clouding of
consciousness (81%), falls or collapses (38%), depression (38%),
extrapyramidal features (9.5%) (II). There is high neuroleptic sensitivity (61.5%) and a high risk of increased morbidity and mortality if neuroleptic drugs are prescribed (II).
49 50
Recommendations and important points
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Depression in patients with dementia |
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Statement
Depressive illness is commoner in people with dementia than in
those without (I). Mortality is increased in people with dementia and
depression (II). The prevalence of depression in patients with dementia
varies widely according to study population. In a general population,
the prevalence varies from 10%-40% of patients with dementia (II).
Depression is more commonly diagnosed or recognised in early dementia
(I). Treatment is likely to be of value, with reported response rates
of up to 85% (I). Depression commonly leads to difficulties in
communication and independent activities of daily living and has a less
common effect on cognitive function (I). Presenting symptoms relate to
inner feelings (anxiety, mood, loss of interest, helplessness,
hopelessness and worthlessness) and less to vegetative symptoms
(I).50-65
Recommendations and important points
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Non-psychotic behavioural disorders |
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Statements
An association exists between acute underlying medical illness and
outbursts of aggressive behaviour in people with dementia (II). A
placebo response is seen in 67% of people treated with neuroleptic
agents for the control of behavioural disorders in dementia; there is
no difference between neuroleptic agents used and no identifiable
differences between responders and non-responders (I). A high
proportion of people with dementia of the Lewy body type are sensitive
to neuroleptic agents, and an appreciable number of these experience a
severe reaction (II). Delusions or misidentifications are associated
with a high number of aggressive episodes (II).
49 67-72
Recommendations and important points
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Falls |
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Statements
Fracture of the hip is the commonest fracture in falls associated
with dementia (II). Medication increases the risk of falling in people
with dementia (II). Falls are not associated with the severity of the
dementia but are associated with wandering and reversible confusion
(II). Those people who fall are more likely to fall again and falls are
associated with their doing too much, for example, wandering,
restlessness (II). Falls are increased in the more capable groups of
people with dementia (II).73-75
Recommendations and important points
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Leaving home |
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Statements
Factors in patients that lead to an increased risk of
institutionalisation are physical dependence, irritability, nocturnal wandering, and incontinence (III). Stress in carers can lead to an
increased risk of institutionalisation (III). Institutionalisation offers the best duration of survival for people with dementia followed
by a formal care package at home. Survival in this context means time
until death rather than quality of life (III). Day care for people with
dementia can delay institutionalisation (III).76-83
Recommendations and important points
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Non-drug therapies residential care |
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Statements
Skills training for people with dementia in residential care may
lead to an improvement in personal care skills (I). Music therapy for
people with dementia in residential care leads to an improvement in
personal recollection, social disposition, enjoyment, and interaction
during treatment (I). Activities and education for people with dementia
in residential care lead to a decrease in behavioural disorder and an
increase in the activity levels (I).84-86
Recommendation
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Drug treatments |
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Statements
Aspirin in vascular dementia
Aspirin is of benefit in preventing vascular events or vascular
death in patients with a history of prior transient ischaemic attack or
stroke (I). Atrial fibrillation has been shown to have an association
with cerebrovascular dementia (I).87-91
Hydergine
Both reviews and studies show small improvements of variable
sustainability. Those who will respond to hydergine cannot be predicted
in advance (I).92-96
Vasodilators
There is no consistent evidence of clinical benefit from
vasodilators in dementia (I).97
Tacrine
Tacrine has a moderate effect on cognitive function, but this
effect does not seem to translate to differences in activities of daily
living scores (I). Tacrine has potentially serious side effects,
although in patients who received the drug in clinical trials these did
not seem to lead to permanent damage (I). The side effects lead to
large number of withdrawals from treatment, and these, coupled with the
expense involved in regular hepatic monitoring, seem to mediate against
the use of tacrine (I).
Velnacrine maleate is pharmacologically identical to the primary metabolite of tacrine. Similar in efficacy to tacrine, velnacrine also leads to substantial hepatotoxicity and seems, on current evidence, to have no advantage over tacrine.98-111
Donepezil hydrochloride
Donepezil has shown a moderate effect on cognitive function in
short term treatment trials of patients with mild to moderate Alzheimer's disease (I). These changes in cognitive function have not
been accompanied by measured changes in quality of life, and evidence
of the effects on activities of daily living is inadequate (I). Whether
donepezil is a worthwhile treatment for Alzheimer's disease has not
been established by current trials, and longer term randomised trials
are required to evaluate its benefits and costs
(I).112-116
Recommendations and important points
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Carers |
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Caring for carers
Statements
Carer support groups, though generally perceived as beneficial and
helpful, do not reduce the burden or alter the stress of looking after
someone with a dementing illness (I). Although information is seen as
valuable by carers and best given in a standardised way, it does not
alter outcome (I). Respite services offer satisfaction and relief to
carers and may delay institutionalisation of the care recipient, but
they do not seem to change the overall wellbeing of the carer (I).
Formal training for carers may reduce their psychological morbidity and
may delay institutionalisation of the dementing person (I). Day care
delays institutionalisation by reducing the influence of exhaustion and
stress on the carer (II). Day care does not influence cognitive
function. The only activity of daily living influenced by day care is
dressing skills (II). In one study, intensive community support with a
counselling package for a person with dementia and their carer appeared
to increase the likelihood of staying at home (II). Depression is common in carers, and is not particularly associated with the relationship of the carer to the patient or to any previous history of
depression in the carer (II). Depression in carers is not eased by
institutionalisation or death of the care recipient, nor by membership
of a support group (II). Low income is associated with depression in
carers (II). Depression becomes more likely as care recipients
deteriorate, especially if behavioural problems are evident or there
are greater care needs, or both (II). Carers experience dissatisfaction
with the medical care of their demented relatives in the areas of
information received (leaflets, education) and dealing with carer
distress (III).117-133
Recommendations and important points
Impact of caring on caregivers
Statements
The impact of caring for a person with dementia arises from a
complex interplay of factors and is related to the risk of
institutionalisation (II). Factors in carers that increase "the
burden of care" are usually secondary to the caring role and include
stress, vulnerability, deterioration in social networking, and economic
issues (II). Male and female carers experience the impact of care
equally, although men are less likely to discuss it (II). The impact of care continues for carers even after the care recipient is placed in a
nursing home and may be greater than in carers continuing to offer care
at home (II). Stressors perceived by the carer vary over time as the
caring situation and the presentation of the dementia change. The
burden of care does not always increase with time
(II).134-139
Recommendations and important points
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Acknowledgments |
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We thank Dr Brian Ballinger, Dr Suzanne Hill, John Keady, Dr Iain McIntosh, Professor Ian McKeith, and Dr Sarah Marriott for reviewing the full version of the draft guideline, and Janette Boynton, Julie Glanville, and Susan Mottram for their contribution to the literature search.
Contributors: ME designed and conducted the guideline development and was responsible for joint running of the group and joint writing of the full guideline and summary. JC conducted the guideline development, and was responsible for joint running of the group, joint writing of the full guideline, and commenting on the summary. ML was responsible for synthesis and presentation of papers, joint writing of the full guideline, and commenting on the summary. NF and JM were responsible for data extraction and analysis for tacrine, velnacrine, and donepezil, presenting these to the group, and joint writing of the full guideline. The guideline development group members are given in the appendix. They considered evidence, generated recommendations, and commented on drafts.
The guideline project group comprised Professor Martin Eccles, Dr Julie Clarke, Dr Moira Livingstone. In addition, Mr Nick Freemantle and Dr James Mason participated in the section on antidementia drugs.
The guideline development group comprised the following members, in addition to the authors: Richard Curless, consultant physician, North Tyneside Health Care NHS Trust; Steve Iliffe, reader in primary care, Combined Department of Primary Care, UCLMS and Royal Free Hospital School of Medicine, London; Varun Kaura, general practitioner, Gateshead; Ruth Loughran, senior nurse and coordinator, Elderly Resource Team, Newcastle upon Tyne; Margaret Mace, former practice nurse responsible for elderly assessment; Liz Matthew, directorate manager, Tameside and Glossop Community and Priority Services NHS Trust; Alastair Rigg, general practitioner, Gretna; Brian Roycroft, chair, Alzheimer's Disease Society; John Wattis, consultant psychiatrist, Leeds; Neil Westhead, general practitioner, Whitehaven.
Funding: The development of the guideline was funded by the Health Services Research Panel, Research and Development Directorate, Northern and Yorkshire Regional Health Authority. JC was supported by the Royal College of General Practitioners Alzheimer's Disease Society Educational Fellowship.
Conflict of interest: None.
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References |
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I: Prevention of death, myocardial infarction and stroke by prolonged antiplatelet therapy in various categories of patients.
BMJ
1994;
308:
81-106(Accepted 23 April 1998)
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