Dementia -- Caring, Ethics, Ethnical and Economical Aspects: A Systematic
Review
Swedish Council on Health Technology Assessment
June 2008
Structured Abstract
(3 volumes)
Purpose:
The purpose of this SBU project was to use systematic database searches and a review of
the scientific literature as a starting point to assess the current state of knowledge
about dementia disorders from various perspectives. Those perspectives included
occurrence, risk factors for development, diagnostics, care, ethical considerations,
ethnicity and drug therapies, as well as the health economic aspects.
Objective of the report:
The objective of the report is to:
Analyse current knowledge and values about caregiving in order to help caregivers
of dementia patients.
Support nurses and caregivers in diagnosing and treating people with dementia
disorders.
Describe the key role of family members in caring for people with dementia.
Provide public officials and other decision makers with a scientific basis for
formulating dementia care policy.
SBU’s conclusions
Occurrence, risk and prevention
Two thirds of the approximately 140,000 Swedes with a dementia disorder have
Alzheimer’s disease. The other two leading disorders are vascular dementia (10%)
and frontotemporal dementia (5%). Other disorders occur in various combinations
with non-dementia conditions, such as the frequent comorbidity of Lewy body
dementia and Parkinson’s disease.
A common denominator of all dementia disorders is that memory and cognitive
function is impaired due to neuron death.
Age is the primary risk factor for developing dementia (strong scientific
evidence). Rising life expectancies are increasing the number of people who
develop dementia disorders. Approximately 1% of 65-year-olds and more than 50% of
90-year-olds have a dementia disorder.
Among people older than 85, a greater percentage of women than men have
Alzheimer’s disease (moderately strong scientific evidence).
Although known genetic changes that cause Alzheimer’s disease are rare, the
Apolipoprotein E (ApoE) ε4 allele is known to increase the risk (strong scientific
evidence).
Currently, there is no specific preventive treatment for dementia, but blood
pressure monitoring in middle age reduces the risk of developing it later in life
(moderately strong scientific evidence).
Treatment with antihypertensives reduces the risk of developing vascular dementia
later in life (moderately strong scientific evidence).
The progression of dementia can be delayed among older people who continue to
lead active lives (moderately strong scientific evidence).
Relationship to other diseases
Cognitive deterioration due to hypothyroidism or hyperthyroidism is unrelated to
dementia but needs to be diagnosed and treated.
Existing studies show contradictory results with respect to the cor- relation
between low vitamin B12 (cobalamin) levels and impaired cognitive
function or Alzheimer’s disease. There is a moderate corre- lation between low
folic acid levels and impaired cognitive function.
There is a strong correlation between high homocysteine levels and impaired
cognitive function.
Treatment with vitamins such as cobalamin or folic acid that lower homocysteine
levels does not lead to any improvement in impaired cognitive function.
Diagnosis
Currently, there is no simple, reliable test for identifying dementia at an early
stage. In their present form, no diagnostic instruments are sufficiently developed
to be used for dementia screening.
A gold standard is lacking for identifying dementia and ruling out other
diseases. Imprecise definitions of the various dementia disorders limit the
ability of caregivers to distinguish one disorder from another.
Many methods (scales and indices) are used to measure the severity of various
symptoms of dementia, such as cognitive deterioration, functional decline and
behavioural changes. The insufficient evaluation to which most methods have been
subjected makes it more difficult to assess the efficacy of specific care and
treatment approaches.
Family, friends and caregivers (knowledgeable informants/collateral sources) can
provide valuable information to supplement diagnosis and the patient’s narrative.
Standardised interviews with collateral sources (moderately strong scientific
evidence), as well as the clock drawing test and other simple exercises
(moderately strong scientific evidence), allow general practitioners to perform an
initial selection of patients for possible further diagnosis.
After a baseline assessment, detection of atrophy of the medial temporal lobe by
computer tomography (CT scan) and magnetic resonance imaging (MRI scan),
respectively can identify people who have Alzheimer’s disease with a high degree
of certainty (strong scientific evidence).
After a baseline assessment, biochemical diagnostic markers such as cerebrospinal
fluid analysis (strong scientific evidence) and neuropsychological testing (strong
scientific evidence) effectively identify people with Alzheimer’s disease.
Functional diagnosis – positron emission tomography (PET scan) and single photon
emission computed tomography (SPECT scan) – has moderate value (moderately strong
scientific evidence), while neurophysiological testing – EEG brain mapping and
quantitative EEG – has limited value (limited scientific evidence) for identifying
dementia disorders.
The apoliprotein E ε4 is a poor marker for the ApoE ε4 allele for identifying
Alzheimer’s disease or for differential diagnosis.
Studies are lacking that have combined different types of testing. As a result,
which approaches are most cost-effective is not known with certainty.
Ethical considerations and attitudes
Because dementia affects almost all areas of life, ethical issues often arise.
Values and beliefs – including views about the human con- dition and the
appropriateness of various interventions – influence diagnosis, care and treatment
alike. The issues are rarely simple or uncomplicated, but tend to require active
moral reflection based on both knowledge and subjective principles.
People with dementia are sometimes stigmatised. Greater under- standing and
candour can lead to more objective and compassionate social attitudes.
Dementia care varies considerably from one Swedish county and municipality to
another. The results of the literature search should be used, particularly by the
municipalities, for the benefit of patients and their families.
Caring for people with dementia
In addition to knowledge and objectivity, effective care requires a trusting
relationship between the patient and caregiver. Because the studies that have
assessed various kinds of care do not generally control for or evaluate the impact
of that relationship, the benefits of a particular approach are difficult to
determine. Substantial variations with regard to purpose, type of intervention and
assessment instrument hamper attempts to summarise the studies as a single
evidence grade. A number of studies, though with generally low internal validity,
have demonstrated the efficacy of various interventions – such as multisensory
stimulation (Snoezelen), music and reminiscence therapy – for improving the
quality of life of individual patients.
Many studies have looked at training programmes and clinical guidance for nurses
and caregivers. But given that the studies do not meet suitable criteria for
assessing evidence, the most effective approach cannot be identified. Generally
speaking, nurses and caregivers need support in the form of training.
Dementia affects the lives of family members as well as the patient. Psychosocial
training programmes (moderately strong scientific evidence) for family members,
along with instruction in dealing with the behavioural problems that accompany
dementia (limited scientific evidence), can alleviate their anxiety and
depression.
While good quality of life is a vital objective in caring for people with
dementia, effective methods are lacking for evaluating quality of life from the
patient’s point of view.
Existing studies have not found that respite care reduces the community resources
that must be devoted to people with dementia or the anxiety experienced by family
members. But it offers family members the opportunity to obtain some valuable
relief.
Drug therapies
Existing studies have not found that treatment with cholinesterase inhibitors
(donepezil, galantamine and rivastigmine) affects the progress of mild to moderate
Alzheimer’s disease. But it offers some improvement of global function and
cognition (moderately strong scientific evidence). However, knowledge about
effects for longer than one year is limited.
Treatment of mild to severe Alzheimer’s disease with memantine can lead to some
cognitive improvement (limited scientific evidence). Knowledge about long-term
effects is limited to therapy for six months.
Extract of Ginkgo biloba can provide some relief of cognitive and Activities of
Daily Living (ADL) impairment (limited scientific evidence). Knowledge about
long-term effects is limited to therapy for six months.
Cholinesterase inhibitors commonly cause the adverse effects of dizziness and
nausea (moderately strong scientific evidence).
A number of drug groups, such as benzodiazepines and anticholi- nergics, have
undesired effects on cognition (strong scientific evidence).
People with dementia disorders commonly develop depression. Selective serotonin
reuptake inhibitors (SSRIs) can provide some relief. The scientific evidence for
treating coexisting depression in people with dementia is however limited (limited
scientific evidence).
Drug therapies for behavioural symptoms in people with dementia disorders have
limited effectiveness (limited scientific evidence). Increased mortality has been
demonstrated in people with dementia who have been treated with atypical
antipsychotics. The impact on mortality has not shown up in individual studies but
was identified by a meta-analysis (moderately strong scientific evidence).
Corresponding data is lacking concerning older antipsychotics.
The health economic studies published so far suffer from methodological flaws and
are not conclusive. Because only a few studies contain empirical data, determining
whether drug therapy is cost-effective or not is difficult.
Social impact
Approximately half of all people with dementia move to assisted living facilities
within 2–3 years after diagnosis. Approximately half of all people with dementia
are in assisted living facilities.
The burden of dementia in Sweden corresponds to approximately sek 40 billion (eur
4.36 billion) a year, a figure that is likely to grow as the size of the elderly
population continues to increase. Municipalities bear more than 80% of the costs,
which cover care at assisted living facilities and support for those who remain at
home.
Additional research needs:
Additional research on dementia disorders is required in several areas:
How the various disorders progress
Development of diagnostic methods
Better evaluation of instruments for identifying and measuring cognitive and
related symptoms, as well as assessing the quality of life of people with
dementia
Development of caregiving methods, such as guidance, training and studies that
focus on the relationship between patient and caregiver
Clearer ethical guidelines for diagnosis, treatment and care of people with
dementia
Drugs for all categories of dementia that are more effective and cause fewer
adverse effects
Studies that examine the long-term effects and costs of drug therapies.
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Copyright © 2008 by the Swedish Council on Health Technology
Assessment. All content unless otherwise noted is licensed under a Creative Commons
Attribution-NonCommercial-NoDerivatives 4.0 International License.
Bookshelf ID: NBK447961, PMID: 28876770, ISBN: 978-91-85413-23-2, ISSN: 1400-1403
