Review

Dementia care: mental health effects, intervention

strategies, and clinical implications
Silvia Sörensen, Paul Duberstein, David Gill, Martin Pinquart

Caring for elderly people with dementia is associated with well-documented increases in burden, distress, and Lancet Neurol 2006; 5: 961–73
decrements in mental health and wellbeing. More severe behavioural, cognitive, and functional impairments in a Department of Psychiatry
patient are associated with higher levels of burden and distress. Distress increases with care hours per week, number (S Sörensen PhD,
P Duberstein PhD) and
of tasks, and declining coping and support resources. Demographic factors also affect levels of burden and distress.
Department of Neurology
Promising, evidence-based interventions exist, but substantial economic and policy barriers preclude their widespread (D Gill MD), University of
dissemination. Health-care policy makers should consider addressing these barriers; clinicians and families must Rochester School of Medicine
campaign for reimbursement; and clinical researchers must develop more potent preventive interventions. In this and Dentisry, Rochester, NY,
USA; and Department of
article we review how dementia care affects the mental health of the carer and identify interventions that might be
Psychology, Friedrich-Schiller
useful in mitigating carer burden and distress. University of Jena, Germany
(M Pinquart DPhil)
There are nearly 18 million people with dementia in the negative caring experience and practical consequences of Correspondence to:
world,1 and the number of adults that provide care to physical and behavioural changes of the patient) and Dr Silvia Sörensen, Department
of Psychiatry, Boc Psych/Geri-
relatives with dementia is growing.2 8·9 million people subjective burden (emotional reactions of the carer).
Neuro, 300 Crittenden Blvd,
care for people with dementia3 in the USA, and on the Objective and subjective burden are moderately to Rochester, NY 14620, USA
basis of dementia rates, more than 750 000 people strongly associated,28,29 supporting the use of global silvia_sorensen@urmc.
provide dementia care in the UK.1 Carers provide these measures that include indicators of both.30 rochester.edu
unpaid services to society and their family members at Other indicators of distress include symptoms of
substantial personal cost4 and risk to their own depression and anxiety, which are commonly assessed by
psychological and physical wellbeing. Morbidity is self-report rather than by clinical rating scales or
particularly high among carers of patients with structured interviews designed to establish the presence
dementia.5–10 These adverse effects are influenced by the of mood disorders.6 Perceived stress31 and subjective
carer’s personal and demographic characteristics, coping wellbeing32 are also important. Subjective wellbeing
resources, and available support resources. Other refers to positive effect,33 life satisfaction,34 and perceived
important considerations are the patient’s level of quality of life.35 Carers also report feeling virtuous, useful,
impairment, the number of hours spent caring, and
whether the carer is a spouse or adult child. Although the Panel 1: Outcomes with relevance to family care1,19,24–26
carer’s wellbeing is not necessarily the responsibility of
the patient’s neurologist, caring is a clinical and socially Psychosocial
relevant issue with which neurologists should be familiar, Carer burden
especially as recent evidence suggests that the carer’s Increased depression symptoms and clinical depression
ability to cope effectively is associated with the patient’s Increased anxiety symptoms
survival11 and time until institutionalisation.12 Decreased self-efficacy
There are thousands of studies about dementia care. A Decrements in subjective wellbeing and quality of life
MEDLINE search of the terms “caregiver” (and its Positive experiences or uplifts of caregiving
cognates) and “dementia” yielded almost 1500 articles Physiological
over the past 5 years alone. There are also several Increased stress hormones
systematic narrative reviews.5,6,13–16 In this review we draw Dysregulated immune function
on several meta-analyses to summarise both the Cardiovascular reactivity
psychosocial and mental-health effects of dementia care Impaired metabolic function
and the interventions used to mitigate adverse outcomes
and increase positive growth and change.9,10,17–23 Health behaviour
Poor diet
Psychosocial effects of dementia care Reduced exercise
Carer outcomes Lack of sleep
In this review we focus on the psychosocial effects of General health
caring, including carer burden, symptoms of depression Poor self-reported health
and anxiety, a reduction in subjective wellbeing, and Increased symptom reports
positive experiences (panel 1).1,19,24–26 Carer burden is the Increased medication use
effect on physical, psychological, social, spiritual, and Increased service utilisation
financial wellbeing.27 The term encompasses both Mortality
objective burden (events and activities associated with a

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 Review

and proud, and may even experience a deepening of their
relationship with the patient.36–38
Are carers more distressed than non-carers?
In 1893, Breuer and Freud39 described the health
consequences of caring. In their discussion of the case of
Elisabeth Von R, the authors expressed concern that “sick
nursing” could lead to sleep disturbance, self-neglect,
and constant worry.39 Over the past decade, narrative
reviews and meta-analyses provide substantial evidence
for these clinical observations. Carers of people with
dementia have more symptoms of depression, higher
stress scores, lower self-efficacy, and lower subjective
wellbeing than non-carers.9 There are few studies about
anxiety in dementia carers, but most have shown similar
effects. For example, in a recent English study, almost
25% of carers had clinically significant levels of anxiety
symptoms.40
Several associated methodological issues must be
considered when assessing research on carers’
psychosocial outcomes. Most samples are not drawn
randomly, nor are they followed prospectively. Two
prospective studies show that for those transitioning to
intensive caring roles, there is an increase over time in
distress, health problems, and health-risk behaviour.
However, before becoming carers, these individuals
reported poorer health, lower mastery, and more
depression symptoms than non-carers.41,42 Thus, carers
may have self-selected themselves into the role or been
selected into the role by someone else. These selection
processes could indicate family dynamics or individual
personality traits. High distress levels and attendant
morbidity could partially be explained by personal or
family variables that are not associated with the caring
experience per se.43,44 Many studies of carers have not
considered the effects of carer personality or other
seemingly distal indicators of resources and
vulnerabilities (eg, access to economic resources).
Inadequate covariate coverage may lead to overestimates
of the unique stressors of caregiving.
Another issue that has received insufficient attention is
whether the apparently adverse psychosocial outcomes
are clinically (as opposed to statistically) significant. There
are three possible criteria for clinical significance: scoring
above clinical cut-offs for symptomatology or meeting
diagnostic criteria for a mental disorder; measurably
reduced quality of life of carers or patients; and increased
health-care costs. The first criterion is supported by the
fact that a substantial proportion of carers score above
clinical cut-offs for depression and anxiety.40 The prevalence
of clinically diagnosed major depression ranges from
10%45,46 to 83%47 among carers in dementia. Both carers’
raised levels of depression, anxiety, and perceived stress
and their increased physical health and physiological risks
suggest a low quality of life.24,48 Health-care costs are
increased by greater physical health and mortality risks,49

Background and contextual factors

Socioeconomic status
Ethnicity or culture
Gender
Age

Primary stressors Secondary stressors Appraisal Outcomes:

Patient characteristics Work interference Perceived situational control Psychosocial
Cognitive impairments Financial strain Perceived role conflict Physiological
Functional disability Family conflict (vs role enhancement) Health behaviour
Problem behaviour Social isolation Role captivity General health
Care situation Reduced relationship quality Perceived adequacy of
Duration of care Decreased leisure resources
Hours of care Other opportunity Positive appraisal
Number of care tasks Finding meaning
Carer Short-term vs long-term
Unmet need of carer

Exacerbating or ameliorating factors (moderators)

Lack of knowledge or information about dementia
Self-efficacy, perceived competence, and mastery
Personality
Coping resources
Social, emotional, and financial support resources
Physical health
Formal service use
Availability of informal assistance
Quality of relationships
Positive experiences of care

Figure: Model of carer stress and burden

This model combines the stress process55,58,59 and appraisal60,61 models into a heuristic guide to our discussion of the research.

962 http://neurology.thelancet.com Vol 5 November 2006


reduced self-care behaviour,50 and increased nursing-home
placement with high levels of burden.51,52
Why is caring stressful?
Several models of carer burden and stress38,53–57 describe
the association of stressors with outcomes (figure).55,58–61
Primary stressors
Primary stressors largely indicate the nature and intensity
of the carer’s experience, including the severity of patient’s
medical condition, problem behaviour, and cognitive or
functional impairment. Other important factors are
duration (in months or years) and intensity of care provided
(including hours per day and number of care tasks).
A large meta-analysis10 showed that for dementia carers
the strongest predictor of burden and symptoms of
depression is the patient’s behaviour—eg, day and night-
time wandering, emotional outbursts—and inappropriate
behaviour. Carers also experience more burden when
care intensity is high and more burden and depression
when the carer experiences fewer perceived benefits or
positive experiences. Although physical impairments in
patients increase burden for carers of patients without
dementia, this is rarely the case for dementia carers. In
this group, unmet needs for help with different care
activities (eg, help with tasks, information, and family
support) might be important.62
Secondary stressors
Other factors that contribute to carer burden are
attributable directly to caring and include interference
with work, financial strain, and family conflict—carers
may have less energy for other family members and
disagreements commonly arise about the division of care
responsibilities.63,64 Opportunity costs include decreased
leisure, fewer opportunities for socialising, and less time
and energy available for exercise and other health
promoting activities. Carers also miss work often, may be
tired at work, and forgo new job opportunities and
promotions.65,66
Secondary stressors typically act as intervening variables
(mediators) that change due to primary stressors and in
turn amplify distress. For example, caring intensity and
duration (primary stressors) can erode social support and
lead to social isolation (secondary stressor and mediator),
thereby increasing burden and distress.67 Similarly,
primary stressors can undermine health habits
(eg, maintaining a healthy diet, engaging in regular
exercise) or lead to sleep disturbance and deprivation68,69
with adverse effects on emotional wellbeing.19
Appraisal
Appraisal is the carer’s subjective assessment of their role.
Carers with seemingly identical objective demands
(intensity and tasks) may differ tremendously in their level
of burden because of differing assessments of whether
their personal coping strategies and capacities match the
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Review
demands of the situation. When carers believe that the
demands of the situation will inexorably exceed their
resources and feel trapped in their role, rates of morbidity,70
and depressive symptoms10,71 are higher, and patients are
institutionalised sooner.12 Appraisal differences may be
influenced by exacerbating and mitigating factors, such as
race and ethnicity,72,73 personality traits,74,75 physical illness,69
and personal and contextual resources.74,76
Exacerbating and mitigating factors
The extent to which primary stressors lead to secondary
stressors, then to negative appraisal of the situation, and to
increased risk for adverse carer outcomes is determined in
part by exacerbating and mitigating factors (moderators).
Mitigating factors may include knowledge or information
of the carer, social, economic, and community resources as
well as intrapersonal resources. Due to lack of knowledge,
for example, carers usally overestimate patients’ abilities,77,78
which may result in anger, frustration, and depression.79,80
Carers with large social networks and sufficient economic
resources to purchase the services of formal helpers may
be able to maintain gainful employment outside the home,
whereas carers who are the sole support for a frail elderly
person may need to reduce work hours. Large social
networks,71 frequent social contact,74 and the ability to
arrange for assistance from friends81 are associated with
fewer depressive symptoms or lower burden. Dysfunctional
family interaction patterns, emotional detachment,
negativity, and over involvement exacerbate the association
between objective burden and carer distress.82
Carers who believe they have control over their future
life and circumstances are less likely to experience
adverse mental-health outcomes in response to stressors,83
probably because they appraise the situation differently
than carers who believe they have less control over their
circumstances. Cooper and colleagues84 reported that
dysfunctional coping strategies, for example avoidance
or denial, put carers at risk for anxiety, and Aschenbacher
and colleagues85 found that approach-based coping was
associated with reduced haemostatic reactivity in
response to stress. However, there are problems
associated with the definition of coping,86 and findings
are somewhat inconsistent.87,88 Exacerbating factors can
also include personal vulnerabilities, such as high levels
of neuroticism74,75 or pre-existing medical disorders.19
High risk subgroups: women and spouse carers
Female carers report more symptoms of depression, in
part because women are simply more likely to report such
symptoms in the general population,89 but also because
female carers are more likely to provide more hours of
care, help with more tasks, and assist with personal care.23
Differences between carers and non-carers in symptoms
of stress and depression are greater in samples of spouses
than in samples of adult children.9 Studies that compare
spouse and non-spouse carers directly also find high
levels of distress among the spouses.90
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Race, ethnicity, and socioeconomic status
In a meta-analysis of 116 studies from the USA of all
types of carers,17 we mostly found that there were ethnic
differences in carer burden and depression symptoms.
Black carers report lower burden than white carers. In
longitudinal studies black carers also show better
adaptation with regard to depression and life satisfaction
over extended periods of time.91 Asian and Latin American
carers do not differ from white carers in burden but they
report more depression symptoms. Black carers
experience fewer depression symptoms than white
carers. Interestingly, black and Latin Americans have
more perceived uplifts of caring than white carers, but
there are no differences between Asian and white carers.
Several studies suggest that differences in coping styles
may account for some of the ethnic differences in
outcomes. Black92,93 and Latin American carers73 are more
likely to use a religious form of coping and report more
benign appraisals of stress than white people. Despite
the better mental health outcomes of black and Latin
American carers, ethnic minority carers tend to report
worse physical health than white carers. Thus low reports
of distress might not always imply the absence of risk for
carers.17
Although socioeconomic status is commonly only used
as a covariate, low socioeconomic status or income were
associated with greater carer distress in one study,94 but
with less distress in others,95 especially among black
carers.96,97
Summary of effects of care
Those who care for people with dementia report higher
levels of stress, depression, and anxiety symptoms, and
lower levels of subjective wellbeing and self-efficacy
compared with non-carers. These effects may differ in
certain demographic groups and seem to be attributable
largely to the types of stressors dementia carers are exposed
to, especially the patient’s behaviour problems. Although
intensity of care amplifies risk, there are individual
differences in how carers respond to task demands. For
some carers, personality traits (such as high neuroticism
or low extraversion), the absence of a substantial social and
family network, and poor coping skills may add to their
vulnerability and should be considered in the selection and
use of treatments and prevention programmes.
Carer interventions
The last decade has seen a substantial increase both in
the number and the quality of carer interventions aimed
to reduce both adverse outcomes of care and nursing-
home placement of patients. Meta-analyses20–23,98–100 have
provided a reasonably accurate assessment of the
effectiveness of these interventions, though they vary
substantially in numbers of studies reviewed, ranging
from 24 to 120 studies. We base this discussion primarily
on our meta-analysis of 78 intervention studies with
carers of patients with dementia and physically ill elderly
964
people20 and an updated study of dementia carers
involving 120 studies.23
In addition, we draw on recently published results from
an exemplary, recently completed study, the Resources
for Enhancing Alzheimer’s Caregiver Health (known as
REACH), a large multisite trial of different carer
interventions.101,102
Types of interventions
Classification of interventions is problematic because
many interventions share common components. We have
identified nine major types of interventions and classify
these programmes based on the predominant
approach.23,103
Consultation or case management includes practical
advice and information, family consultation, and referrals
to potentially helpful agencies or organisations;104
however, this directive approach does not aim to change
individuals’ coping styles or beliefs.
Psychotherapy includes individual or group-based
psychodynamic, behavioural, and cognitive-behavioural
therapy.105 Cognitive-behaviour therapy techniques are
most common (90%) and help the carer focus on the
identification and modification of unproductive beliefs
and behaviours and the development of new behaviours
to deal with the demands and emotions of caring.106
Psychoeducation is the structured presentation of
information about dementia, expectable caring issues,
stress management, and techniques to manage the
patients’ behaviour. This intervention may also include
role playing and other active learning techniques.107
Support groups provide the opportunity to share
personal feelings and concerns, encourage mutuality and
validation, and overcome feelings of social isolation.108
Experts may be invited for brief periods to provide
medical, legal, and other information.
Respite offers substitute care to provide planned,
temporary relief to the carer, through group day care, in-
home respite, or institutional respite (vacation or
emergency respite).79,109
Training for the patient attempts to improve the social
and everyday competence of patients with dementia.110
Pharmacotherapy for patients with dementia can reduce
problem behaviour, improve activities of daily living, and
stabilise cognitive impairment,100,111 which in turn may
reduce carer burden.100 Pharmacotherapy for carers could
reduce depression, anxiety, insomnia, and other
symptoms.112
Multicomponent interventions involve combining
components from different interventions, such as
education, support, and respite.113 Some interventions are
structured to ensure that participants get all components,
and others are less structured.
There are other forms of interventions that are rarely
used, such as life-review,114 yoga,115 employer-based
interventions,116 telephone support groups,117 and new
technologies.118
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Which interventions work?
Recent meta-analyses suggest that carer interventions
overall are effective, but that the effects are relatively
small23 and domain-specific. Psychoeducational
interventions are most effective at improving carer
knowledge (medium effects), reducing burden and
depression symptoms, and increasing subjective
wellbeing and satisfaction (small effects). However,
except for an increase in knowledge, these effects are
present only if the interventions call for active
participation and skill-building,23 for example, by
combining educational components with homework and
role-playing activities that help participants apply the
newly gained skills.119 Psychoeducational interventions
may improve the symptoms of the patient as well,22
perhaps, by training the carer to redirect the patient to
avoid escalation of problem behaviour.
Other interventions also have mostly small effects.120
Psychotherapy (primarily cognitive-behavioural therapy),
support groups, consultation or case management,
respite care, and cognitive training of the patient tend to
have domain-specific effects. For example, psychotherapy
improves carer burden, depression,23 and anxiety,121 but
not necessarily knowledge about dementia; consultation
or case management have moderate effects on burden,
but not depression; training the patient affects the
patient’s symptoms but not the carer’s; and respite care
reduces burden and depression symptoms and increases
subjective wellbeing.23 Because different intervention
types share elements (for example, homework and role-
playing are part of both psychotherapy and
psychoeducation), a focus on the components may be
more important than packaged programmes.
Multicomponent treatments encompass a diverse
group of programmes and some are substantially more
systematic in their application of components than
others. Our meta-analysis of 120 studies shows no effects
of these approaches overall, but interventions that are
well structured and expose participants to all components
are effective in delaying nursing-home placement of
patients.23,122 These programmes are probably effective
because they target many of the primary stressors,
secondary stressors, and moderators (figure).
Four criteria have been suggested for clinical
significance of interventions:123 acceptability to those
being treated (social validity), effects on symptoms,
improved quality of life, and societal significance. Social
validity is fairly well documented, although high levels of
carer satisfaction are sometimes associated with
otherwise ineffective interventions,124 so this criterion
might not be particularly useful.
Most studies of carer interventions do not report clinical
diagnoses, but clinical effectiveness can be estimated by
how large a symptom reduction the experimental group
experiences compared with the control group. In our
most recent meta-analysis, 54–57% of the participants
showed above-average improvement in depression
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Differences between carers Effects of carer interventions†
and non-carers*
Immediate effects Long-term effects
Perceived stress 1·00† –0·12 –0·14
Depression symptoms 0·60 –0·24 –0·17
Reduced subjective wellbeing –0·55 0·46 0·10
Reduced self-efficacy –0·68 0·43 0·32
Differences between carers and non-carers given as standard deviation units. Effects are given as differences between
intervention and control groups.*Data adapted from Pinquart and Sörensen (only studies on dementia carers were
included).9 †Data from Pinquart and Sörensen.23 For depression symptoms, the difference between carers and non-carers
is more than half a standard deviation unit (0·60). Interventions can reduce this difference by 40% (–0·24/0·60); for
perceived stress, the reduction is 12%, subjective wellbeing is improved by 84%, and self-efficacy is improved by 63%.
Table 1: Comparison of the amount of carer distress relative to the size of effects of carer interventions
compared with 43–47% of control group members.23
Schulz and colleagues123 conclude that clinically significant
effects of interventions are most visible for reduction of
depression, and, to a lesser degree anxiety symptoms.
Improved quality of life is reflected in increases in self-
efficacy, subjective wellbeing, and reductions in perceived
stress.20,23 Thus, the results are clinically and practically
meaningful for both symptomatology and quality of life.
However, improvements are modest in size and cost
savings to society have rarely been assessed.125 Delaying
institutionalisation addresses the issue of societal
significance, given the high societal cost of nursing-home
care.126 One study11 suggests improved survival for patients
when carers have more effective coping skills, showing
the broader relevance of carer interventions.
Another method of trying to understand the effect of
interventions on patients is to compare the effect sizes
for a given outcome with the magnitude of the difference
between carers without the intervention and non-carers
(table 1).9,23
Moderators of intervention effectiveness
Individualised interventions can be more easily adapted
to the specific needs of the carers and may, therefore, be
more effective in helping burden or distress for carers in
general.20 However, group interventions are more
effective at increasing social support127 and those that
avoid dilution of the participant’s active involvement will
probably be as effective as individual settings.
Interventions applied for a long time are more effective
than short-duration interventions22 at reducing distress
and delaying institutionalisation.23 Even single-component
interventions, if they last longer or involve more frequent
interactions, tend to have greater effects than less intense
interventions that have multiple components.24
Because elderly carers may have less access to
information about dementia care in their daily lives, they
show greater improvements in knowledge; however, the
effects of age are rarely reported.23
Women are more likely than men to improve in
depression and knowledge but less likely in subjective
wellbeing.23
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Spouses benefit more from interventions than children
of the patient with regard to decreasing the number of
patients’ problem behaviours128 and delaying nursing-
home placement.23
Why do interventions precipitate positive
change?
The identification of which intervention components are
effective can provide information not available when
whole interventions are compared129,130 and can identify
parts of the stress process (figure) that are easiest to
target. Recent studies that involve mediation analysis131
and task analysis132 have attempted to isolate parts of an
intervention that work especially well so that future
interventions can focus on implementing components
that have the greatest likelihood of success (figure).
Primary stressors
Limiting the intensity of care is unequivocally effective at
reducing carer distress, as is shown by respite-care
interventions.79 Because unmet need is an additional
stressor, future research may also investigate the
possibility of identifying and targeting unmet needs.132
Secondary stressors: increasing social support
Reduction of secondary stressors, such as social
isolation, is an effective strategy. Roth and colleagues131
found that increasing the carer’s social support network
size and improving their satisfaction with social
support lowered levels of burden and depression.
Similarly, Eisdorfer and colleagues133 found that family
counselling and a computer–telephone technology
intervention increased social support and carers’
depression scores.
Moderators: training and its effects on appraisal
Programmes that teach carers particular behaviour-
management skills and help them actively apply these skills
to their own situation improve carer burden and depression
symptoms23,129 as well as reduce patients’ symptoms.119
Gaining behavioural management skills may affect
appraisal by reducing the overwhelming nature of the carer
tasks. Given the positive effects of mastery,83 interventions
that target mastery both by adjustment of skill levels and
appraisals should be tested for effectiveness.
Reduction of perceived pressure effectively improves
psychological distress.134 Increased behavioural
management and coping skills also boost self-efficacy
and perceived situational control, which reduce
depressive symptoms135 and negative mood.136 Because
positive appraisal, finding meaning, and recognition of
enjoyable features of caring are associated with fewer
depressive symptoms and greater subjective wellbeing,18
interventions that help develop and recognise positive
aspects of caring may protect carers against burden and
distress. However, such interventions still need further
assessment.
966
Future research
Although it is well established that many carers suffer
physically and emotionally when providing care, the
protective factors that enable some carers to maintain
low levels of distress are unknown. More longitudinal
and prospective studies of factors that predispose carers
to greater resilience or vulnerability are needed.
Published consensus guidelines support assessment of
carers’ emotional health and subsequent referral to
community educational and support programmes for
those in need.137–139 Unfortunately, none of these guidelines
identify when or how to identify the degree of carer
distress. Research also rarely addresses the issue of carer
safety.140 Studies on how to assess when patients’
behaviour is dangerous to themselves or carers are
necessary. Screening methods that are validated
specifically with carers are needed to identify carers at
risk of adverse outcomes and to instigate referral or direct
interventions.
More effective interventions with larger, longer-lasting
effects on a wider range of domains are needed. Gaining
a better understanding of the mediators of effectiveness,
developing ways to individualise interventions for carers
(eg, spouses versus adult children) and clarifying when
to use group rather than individual interventions are
high priorities. Learning how to identify and target
specific unmet needs of carers is also important.132 Also,
more work is needed to address the necessary and
sufficient doseage of interventions. Promising approaches
not covered in the meta-analyses20,23 include employer-
based interventions,116 telephone support groups,117 and
in-home skill building.141 These approaches need to be
assessed more thoroughly.
Research is also needed to assess how to reduce carers
reluctance to use respite care and other available
services142 and how to create cost-effective approaches
with acceptability for practising clinicians.
Recommendations for clinicians
Screening
Safety concerns must be identified and addressed. The
patient’s access to and use of stoves and kitchen
equipment, motor vehicles, and firearms should be
discussed. Carers should also be asked whether they feel
physically threatened by patients (see Home Safety
information on National Institute on Aging Website143).
The level of carer distress should be gauged. There are
no relevant and valid screening methods for clinical use.
However, two organisations have recommended clinical
methods. The American Medical Association’s 18 item
“caregiver self-assessment tool” is available on their
website.144 The Alzheimer’s Association in collaboration
with the National Chronic Care Consortium suggests
the “Caregiver Strain Instrument”.145 Suggested cut-off
values are provided which may serve as a resource for
physicians and carers alike. However, until these
methods are clinically validated, they should be used in
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conjunction with a clinical interview. When assessing Acute intervention

carers it must be noted that high-risk carers are usually
socially isolated, have difficult and tense family
interactions, and fewer effective coping skills (eg, tend to
use avoidance or denial). Furthermore, vulnerability may
be greater for spouses, women, specific ethnic groups,
and those caring for a patient with apparent behaviour
problems.
Another approach to assessment of carer distress is to
screen for depression. Controversy surrounds the use of
screening methods used to identify patients with mood
disorders in primary-care settings.146,147 Whether traditional
depression screens, such as the geriatric depression
scale,148,149 are valid methods for the identification of carers
who can benefit from preventive intervention is unknown,
but these methods can be used to identify elderly carers
in whom depression may be suspected.
Once a carer has been identified as needing further
support, the clinician can consider an intervention. The
choice of intervention depends partly on the resources
available to the neurologist and the profile of specific
needs of the patient (table 2). Cultural relevance and
appropriateness must always be considered. The timing
of interventions is important, because in the early phases
carers may be particularly distressed and more likely to
institutionalise the patient prematurely because of the
sudden increase in stressors.150
Providing education
Although more knowledge alone does not necessarily
reduce depression or burden in carers, it can be the first
step in a more comprehensive approach. Physicians
should try to explain as much about the disease and its

Carer need Types of Intervention Refer to How a clinician can help

Information about dementia General dementia education†
Psychoeducation†
Help providing ADL or IADL
assistance
Has trouble coping with Training of the care receiver*
patients behaviour problems Psychoeducation with active skill-building*
Carer is in high risk
demographic group
Carer has high burden score
(after screen)
Is socially isolated
High depression or anxiety
score (after screen)
Medical problems
Sleep problems
Websites Explain disease process during office visit
Local Alzheimer’s association or society Printouts from websites
Area agencies on ageing NIA free information brochures (order at 1-800-438-4380 in USA
Local university dementia clinic and Canada)
Educational services through health plan
Respite (in home) Visiting nurse services Make a direct referral to visiting nurse service
Increase social network* through: Local Alzheimer’s association or society Ask about family, friends, and faith-based supports
psychoeducation, case management, or Private case management companies
support group
Websites Explain behavioural problems as part of disease process
Local Alzheimer’s association or society Screen for carer stress and depression
Local university dementia clinic Pharmacotherapy*
Educational services through health plan
Support group Websites Express concern
Respite services Local Alzheimer’s association Screen for carer stress and depression
Psychoeducation Area agencies on ageing
Local university dementia clinic
Educational services through health plan
Visiting nurse services
Psychoeducation with active skill-building* Websites Express concern and suggest getting help
Case management* Local Alzheimer’s association or society Screen for depression
Respite services* Area agencies on ageing Copy of website material with suggestions for self-care
Psychotherapy* Local university dementia clinic Ask about family, friends, and faith-based supports
Support services through health plan Provide list of mental health professionals
Private case-management companies
Visiting nurse services
Support groups* Websites Express concern and suggest getting help to create time to socialise
Respite or case management to increase Local Alzheimer’s association Refer directly to visiting nurse services
leisure Local university dementia clinic Ask about family, friends, and faith-based supports
Psychotherapy to increase social skills Support services through health plan Provide list of mental health professionals
Psychoeducation to appreciate importance Mental-health professional
of support Private case-management companies
Visiting nurse services
Psychotherapy* Support services through health plan Express concern and suggest getting mental-health support
Psychoeducation* Mental-health professional case Refer directly to visiting nurse services
Respite services* management Provide list of mental health professionals
Medical care Carer’s primary care physician List of physicians
Locations for care of uninsured
Medical care Primary-care physician List of physicians
Respite services Locations for care of uninsured
Phone number of local sleep clinic

ADL=activities of daily living. IADL=instrumental activities of daily living.*Evidence-based according to meta-analysis by Pinquart & Sörensen.23

Table 2: Carer needs, possible interventions, and where to refer

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 Review
effects as possible, at a pace that allows carers to feel
comfortable in asking questions. No more than three
main pieces of information151 should be provided in one
visit. Information about dementia symptoms and
treatments, available services, crisis management, and
carer self-care should be addressed. Education is crucial
for the carer to understand that patients’ behaviour is not
purposeful or meant to provoke.
Educational material can be ordered from the National
Institute on Aging website,143 the Alzheimer’s
Association,152 and other carer organisations, or
downloaded and printed from their websites (panel 2153–155).
This material can be given to carers as a first step in
understanding dementia, the risk for carer distress, and
approaches to self care.
Panel 2: Resources for dementia carers153–156
Alzheimer’s associations
Provide information about Alzheimer’s disease and dementia and those who care for
them; information about local support services, care consultation, support groups;
phone support lines: http://www.alz.org in USA and http://www.Alzheimers.org.uk/ in
the UK
Alzheimer’s Disease Education and Referral Center
A National Institute on Aging service that provides information about Alzheimer’s disease
as well as information resources for dementia carers; specialists are available to answer
specific questions: http://www.Alzheimers.org
Alzheimer Europe
An organisation aimed at raising awareness of all forms of dementia and Alzheimer’s
Disease as well as organising support to the sufferers of the disease and their caregivers:
http://www.Alzheimer-europe.org/
Administration on Aging Eldercare Locator
The Eldercare Locator provides a way to identify state and local agencies on ageing
and community organisations that provide services to older Americans.
http://www.eldercare.gov/
Family Caregiver Alliance
Focuses on the needs of carers providing long-term care at home; provides caregiving
information, fact sheets on diseases, and online support groups: http://www.caregiver.org/
Along with National Alliance for Caregiving, has created a website aimed at guiding carers
through the care giving process: http://www.familycaregiving101.org/
National Alliance for Caregiving
Provides information on giving care and does research and increases public awareness of
caregiving issues: http://www.caregiving.org/
Family Caregiver Alliance has created a website aimed at guiding carers through the care
giving process: http://www.familycaregiving101.org/
National Family Caregivers Association
Provides links to information about diseases, education on caregiving, newletter
support, links to public resources as well as public awareness and advocacy for carers:
http://www.nfcacares.org/
National Institute on Aging
Provides links to information about Alzheimer’s disease, education on giving care, public
resources, user-friendly publications, clinical trials, and latest news on Alzheimer’s
research: http://www.nia.nih.gov/Alzheimers/Publications/caregivingbasics.htm
968
Making referrals
Neurologists and their office staff must become familiar
with local and national resources that can provide carer
interventions. Selected staff members could be
educated about interventions and become familiar with
available community resources. Staff can subsequently
function as liaisons between neurology offices and
distressed carers and community resources.156 In
addition, local chapters of national organisations such
as the Alzheimer’s Association in the USA or the
Alzheimer’s Society in the UK will be aware of local
providers of a wide range of support services for carers
of patients with all types of dementias in most cities
(panel 2).
Types of referrals
Case management
Many carers and their families are unaware of available
services, even if these services are covered by their
health plan; and they may be unsure as to how to access
them. Case managers can help choose possible respite
services, such as adult day-care centres, nursing-home
based temporary respite care, visiting nurse services, or
educational services provided by the patient’s health
plan. In some larger practices, a social worker or
geriatric nurse practitioner can provide case
management.
Support groups
Although support groups are not effective in the direct
reduction of depression or burden, they seem to improve
quality of life and other components of subjective
wellbeing, which may protect the carer against stress
proliferation and subsequent depression. Support groups
could be offered by local Alzheimer’s association groups,
religious organisations, and senior centres. Referral to
these groups or providing space after hours for such a
group to meet in a doctor’s waiting room may help carers
overcome social isolation and possibly reduce distress
and increase wellbeing.131
Psychoeducation
Although psychoeducation is undisputedly effective, the
average clinician will be hard-pressed to offer it in the
context of medical care. However, similar to support
groups, psychoeducational groups could be identified at
local Alzheimer’s association agencies, universities, or
community mental health centres. Groups should
include active skills training that involve role-playing so
that carers can gain necessary behavioural management
skills. Purely theoretical education does not affect carer
burden or depression. Fewer than ten sessions should be
adequate to increase ability and knowledge20 and may
even be sufficient to reduce distress45,157,158 and delay
institutionalisation.23 If supervised activities for the
patients are offered at the same time as these groups,
carers will be more likely to attend.
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Mental-health referrals
Direct involvement of a social worker, psychologist,
psychiatrist, or family therapist may be necessary in
selected cases. In cases where the carer’s distress levels
adversely affect the patient, the carer’s primary care
physician should be contacted. This is particularly
important if abuse or neglect is suspected159,160 and when
other low base-rate but tragic outcomes might be
prevented with even a modest amount of intervention.
Collaborative and integrated care models
Collaborative care can minimise behavioural symptoms
among patients with dementia and reduce carer burden
and distress.161–164 In a recent study,161 carers were provided
case management, education on communication skills,
coping skills, legal and financial advice, exercise
guidelines for patients with a guidebook and videotape,
and a carer guide provided by the local chapter of the
Alzheimer’s Association.161 This approach is comparable
with a multicomponent 1 year intensive enhanced
counselling and support treatment focused only on
carers,122,165,166 which involve six sessions of family and
individual counselling, ad hoc telephone support,
psychoeducation, and a support group.
Other examples of innovative integrated care include
the integrated support model and memory club support
groups. The integrated support model involves
providing psychogeriatric day care and staff support for
the carer and is more effective than respite care alone
in alleviating patient symptoms and increasing carer
self-efficacy.113,167 Memory clubs provide information
and coping resources to patients with early stage
dementia and their carers.168 These new, low cost, and
integrated approaches to intervention are promising,
but have not yet been assessed for their long-range
effectiveness.
Pharmacological treatment
A recent review and meta-analysis100 found that
cholinesterase inhibitors given to patients have a small but
statistically significant benefit to carers, with reductions in
both burden and hours spent caring. However, we do not
recommend relying solely on patient medication to address
carer distress because effect sizes for pharmacotherapy are
quite small and because many patients may not have
access to cognitive enhancement drugs.169
Maintenance phase
Once an intervention strategy has been instituted, ongoing
surveillance is needed. Effects persist for an average of
7–11 months after an intervention,20,23 but whether they are
maintained over longer timeframes is unknown.
Physicians also need to be aware of the changing nature of
care over time. Some carers adapt to the role and
experience less distress as time progresses, but severe
behaviour problems early in the experience and rapidly
increasing dependency of patients will probably result in
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Review
more severe distress for the carer later on.52,170 Furthermore,
carers must typically learn how to provide palliative care,97
cope with the transition to institutionalisation of the
patient,171,172 and face bereavement.173 These issues tend to
remain unaddressed. The clinician should encourage
repeated contact with the community and national carer
resources as new issues arise.
Conclusions, policy, and advocacy issues
The extension of the human life span means that more
people will be entering the role of a carer over the next few
decades, providing substantial public health, policy, and
economic challenges. One tangible barrier that currently
limits the provision of services for carers is the lack of
reimbursement for the time and effort spent assessing
carer distress and implementing interventions.174
The extent to which available interventions can be
implemented and paid for will depend on local health-
care financing environments. Considerable cross-
national differences exist:175 in the USA, for example, the
reimbursement system for medical care for elderly
people (Medicare) provides inadequate mental health
coverage and most health insurance companies do not
reimburse services for carers when the patient is not
present. In many European countries, national health
insurance covers mental-health interventions for
individuals with an identified need (ie, a diagnosis), but
is not specifically geared toward carers. Because many
carers would not consider their distress a mental
disorder, this may effectively prevent them from
accessing needed care. European health or care insurance
systems, however, may cover in-home or off-site respite
Search strategy and selection criteria
Data for this review were from previous meta-analyses9,10,17–24
and a systematic narrative approach to the most recent
literature in OVID MEDLINE (Jan 2003–June 2006) aimed at
uncovering topics and interventions that were not addressed
in the previous meta-analyses, either due to lack of sufficient
literature or newness of the topic. We used the terms
“caregiving”, “caregivers”, “carer”, “support provider”,
“elderly”, “old age”, “intervention”, “trial”, “support”, and
“training” and limited the search electronically to German and
English articles. We used the “focus“ function for the term
“caregivers“ (psychology, education, trends, statistics, and
numerical data) as a keyword. We looked at the abstracts of
the 324 resulting articles and selected studies that were
empirical and reported carer outcomes. We excluded reviews,
qualitative studies, general recommendations, personal
stories, and studies focused on patient outcomes and scale
development studies. Among the 166 studies remaining,
there were 48 interventions (28·9%), 83 (50%) correlational
studies based on one time point, 31 (18·7%) longitudinal
correlational studies, and four experimental studies (2·4%)
not previously covered.
969
 Review
care, though the copays are prohibitive for some.176 In an
ideal scenario, payment and insurance systems would be
more mindful of the needs of carers and treat their
physical and mental health as medically necessary
aspects of comprehensive dementia care. In the
meantime, evidence-based preventive interventions that
prevent or reduce carer morbidity should be
implemented. Health-care policy makers should consider
addressing barriers that limit the implementation of a
comprehensive care model; clinicians and families must
advocate for such approaches to become reimbursable;
and clinical researchers must develop more potent
interventions.
Contributors
SS and MP have collaborated for 10 years in writing meta-analytic
articles. PD and DG have contributed significantly to making the work
applicable to clinical practice.
Conflicts of interest
We have no conflicts of interest.
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