Family caregivers of people with dementia.
ABSTRACT Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.
- SourceAvailable from: pitt.edu[show abstract] [hide abstract]
ABSTRACT: The authors summarize the dementia caregiving literature and provide recommendations regarding practice guidelines for health professionals working with caregivers. Family caregiving of older persons with disability has become commonplace in the United States because of increases in life expectancy and the aging of the population, with resulting higher prevalence of chronic diseases and associated disabilities, increased constraints in healthcare reimbursement, and advances in medical technology. As a result, family members are increasingly being asked to perform complex tasks similar to those carried out by paid health or social service providers, often at great cost to their own well-being and great benefit to their relatives and society as a whole. The public health significance of caregiving has spawned an extensive literature in this area, much of it focused on dementia caregiving because of the unique and extreme challenges associated with caring for someone with cognitive impairment. This article summarizes the literature on dementia caregiving, identifies key issues and major findings regarding the definition and prevalence of caregiving, describes the psychiatric and physical health effects of caregiving, and reviews various intervention approaches to improving caregiver burden, depression, and quality of life. Authors review practice guidelines and recommendations for healthcare providers in light of the empirical literature on family caregiving.American Journal of Geriatric Psychiatry 01/2004; 12(3):240-9. · 4.13 Impact Factor
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ABSTRACT: The challenges presented by the increasing public health and social impact of caring for people with dementia have become clear in recent years. Previous research has identified that, while there are positive as well as negative elements to the caring role, carers are at high risk of mental health problems and that the comprehensive burden of caring has social, economic and health based elements. Co-resident carers, especially spouses, are of primary importance in maintaining people with dementia in their own homes in the community rather than in institutional settings which may be both more costly and have greater environmental poverty. There have, however, been few studies which have sought to investigate factors associated with carer burden and differences and similarities between countries. In this study we aimed to produce a cross-national profile of co-resident spouse carers across the European Community, with particular attention to: living arrangements; formal and informal support; service satisfaction; perceived burden; and psychological well-being. Twenty co-resident spouse carers of people with NINCDS-ADRDA probable dementia, who had been diagnosed as such within the past 12-36 months, were recruited from service contacts in each of 14 out of the 15 countries of the EU. All completed a semi-structured interview which included: sociodemographic data; data on health and social service use; the Carer Burden Inventory (CBI); the General Health Questionnaire-12 (GHQ-12); and open-ended qualitative questions about the experience of caring. Two hundred and eighty couples were recruited. There was marked variation in all variables of interest between countries, but there were consistently high ratings of carer burden (mean CBI scores between 28 and 52) and psychological distress (between 40% and 75% scoring 4 or more on the GHQ-12). Using multivariate analyses (generalized linear modelling) to estimate the individual associations of variables of interest with carer burden, controlling for the effects of all other variables in the model, the following results were obtained: 11.4% (p = 0.003) of the variance was accounted for by between-country variation; 4.9% (p < 0.001) by expressed financial dissatisfaction; 4.5% (p = 0.001) by lower carer age; 3.2% (p = 0.004) by difficulties with spouse behavioural deficits; and 2.0% (p = 0.024) by perceived negative social reactions. There was a low level of contact with support groups and Alzheimer's disease societies despite the samples having been of service contacts. This study confirms the high level of burden and mental distress in spouse carers for people with Alzheimer's disease in the European Community. It suggests that there are elements of burden which may vary by country but also elements which have a common effect in all. These data suggest avenues for the primary and secondary prevention of burden by addressing clinical issues (e.g. behavioural disturbance); public attitudes and education (e.g. negative social reactions); economic support for carers (e.g. financial dissatisfaction); and higher risk groups (e.g. younger spouse carers).International Journal of Geriatric Psychiatry 09/1999; 14(8):651-61. · 2.98 Impact Factor
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ABSTRACT: Caregiving is the act of attending to someone or of providing services to an individual in need. It is a complex activity, with ethical, psychosocial, and demographic dimensions, as well as clinical, technical, and community service components. The author describes the complexities of caregiving and the burdens on the family in a rapidly aging society. He points out that caregiving is associated with significant risk for psychopathology and that a more comprehensive approach to the evaluation and management of chronically ill patients is necessary.Bulletin of the Menninger Clinic 02/1991; 55(2):238-47. · 0.72 Impact Factor
Who are informal caregivers?
here are an estimated 30 million people with
dementia worldwide currently,1and this figure is likely to
double every 20 years.2People with dementia generally
require high levels of care, most of which is provided by
informal or family caregivers. Without caregivers, people
with dementia would have a poorer quality of life and
would need institutional care more quickly, and national
economies would be swept away by the advancing demo-
graphic tidal wave. However, this support comes at a cost
of caregiver distress and poorer quality of life.
The majority of people with dementia live in the commu-
nity (USA estimates vary between 70% to 81%)3-6and for
approximately 75% of these individuals, care is provided
by family and friends.5In 2007 approximately 10 million
Americans were caring for a person with Alzheimer’s dis-
ease or another dementia.7The largest proportion of those
caregivers was spouses, followed by children and children-
in-law, mostly female. The typical profile of a dementia
caregiver is a middle-aged or older female child or spouse
of the person with dementia.3,8-10In the US, at least 60% of
unpaid caregivers are wives, daughters, daughters-in-law,
granddaughters, and other female relatives,3,11although
male caregivers are becoming more frequent. In 2008 men
made up 40% of family caregivers in the US, an increase
C l i n i c a l r e s e a r c h
Copyright © 2009 LLS SAS. All rights reservedwww.dialogues-cns.org
Family caregivers of people with dementia
Henry Brodaty, MD, DSc, FRACP, FRANZCP; Marika Donkin, BA-
Psychology (Hons), GradDipProfEthics
Keywords: caregiver; family caregiver; intervention; Alzheimer’s disease; dementia;
institutionalization; burden; psychological strain
Author affiliations: Primary Dementia Collaborative Research Centre and School
of Psychiatry, University of New South Wales, Sydney, Australia (Henry Brodaty);
Academic Department for Old Aged Psychiatry, Prince of Wales Hospital, Sydney,
Australia (Henry Brodaty, Marika Donkin)
Address for correspondence: Prof Henry Brodaty, Euroa Centre, Prince of Wales
Hospital, Avoca Street, Randwick NSW 2031, Australia
Family caregivers of people with dementia, often called
the invisible second patients, are critical to the quality of
life of the care recipients. The effects of being a family
caregiver, though sometimes positive, are generally neg-
ative, with high rates of burden and psychological mor-
bidity as well as social isolation, physical ill-health, and
financial hardship. Caregivers vulnerable to adverse
effects can be identified, as can factors which ameliorate
or exacerbate burden and strain. Psychosocial interven-
tions have been demonstrated to reduce caregiver bur-
den and depression and delay nursing home admission.
Comprehensive management of the patient with
dementia includes building a partnership between
health professionals and family caregivers, referral to
Alzheimer’s Associations, and psychosocial interventions
© 2009, LLS SAS Dialogues Clin Neurosci. 2009;11:217-228.
of 21% from a 1996 study by the Alzheimer’s Association.12
In the UK, men aged over 75 are more likely than women
to be caring for their spouse.4
More than 60% of people with dementia live in develop-
ing countries.1The 10/66 Dementia Research Group
assessed the care arrangements of people with dementia
in South-East Asia, China, India, Latin America and the
Caribbean, and Nigeria. While the typical profile of the
principal caregiver was similar to those in the USA, the
proportions of female caregivers tended to be higher
(mean of 78%, range from 59% in China and SE Asia to
95% in Nigeria), spousal caregivers were as common as
child caregivers (mean of 40% in both cases across the
groups), and daughters-in-law comprised a mean of 11%
of caregivers overall (influenced by India where 24% of
caregivers were daughters-in-law). One of the main dif-
ferences between caregiving in the developed and devel-
oping world is the living arrangements, whereby persons
with dementia in the developing world live in much
larger households with extended families.10
Why do family caregivers care?
Family caregivers may be motivated to provide care for
several reasons: a sense of love or reciprocity, spiritual
fulfillment, a sense of duty, guilt, social pressures, or in
rare instances, greed.13Caregivers who are motivated by
a sense of duty, guilt, or social and cultural norms are
more likely to resent their role and suffer greater psycho-
logical distress than caregivers with more positive moti-
vations.14Caregivers who identify more beneficial com-
ponents of their role experience less burden, better
health and relationships, and greater social support.15
The negative aspects of caregiving for people with demen-
tia tend to receive most attention, but caring has also been
associated with positive feelings and outcomes.15,16
Sanders17reported that between 55% and 90% of care-
givers experienced positive experiences such as enjoying
togetherness, sharing activities, feeling a reciprocal bond,
spiritual and personal growth, increased faith, and feelings
of accomplishments and mastery. Gender, age, education,
and ethnicity can also influence the way caregivers view
their role. Feeling more positively towards caregiving has
been associated with lower educational level, greater social
resources, satisfaction with social participation and bet-
ter physical health status, being non-Caucasian, and being
older.18-20Race appears to mediate effects of caregiving.
Compared with white Americans, African-Americans have
been found to identify more strongly with traditional val-
ues, to score more highly on a scale of “cultural justifica-
tions’” for caregiving, including perceptions of “duty,” set-
ting an example to children, religious or spiritual beliefs,
family teachings and expectations, and to provide care in
collectivist rather than individualistic caregiving systems.14,21
Also, barriers to providing formal institutional care may
be more prevalent in the African-American community.22
How do family caregivers care?
Archbold’s23concept of care providers and care man-
agers is useful. Care providers provide hands-on care,
dressing, assisting with finances and other daily activities,
and care managers arrange for others to provide care, for
example a nurse for personal care, an accountant to assist
with finances. Spouses tend to be care providers, and
adult children and other relatives, care managers. Care
providers tend to be more stressed than care managers.23
Dementia is associated with long care hours and physically
demanding caregiving. Many studies have found that care-
givers of those with dementia (particularly care providers)
have higher levels of burden than other caregivers.7,24,25A
2003 survey of 227 US dementia caregivers found that
nearly one quarter provided 40 hours of care or more per
week (compared with 16% for nondementia caregivers).
This included personal care such as bathing, feeding, and
assisting with toileting for 65% of caregivers. Over two
thirds of caregivers sustained this commitment for more
than 1 year and one third for 5 or more years.7
Caregivers in developing countries spend a median of 3 to
6 hours a day with the person with dementia, and 3 to 9
hours assisting with activities of daily living. Eleven to 25%
of caregivers spend more than 11 hours per week provid-
ing informal additional support.10As people are more likely
to live in large households, care is distributed among a
greater number of individuals, and there is some evidence
that the main caregiver experiences less strain.10However,
the effect is small and only applies only for cohabitating pri-
mary caregivers.10Additionally, while there may be a num-
ber of care managers involved, most of the hands-on day-
to-day caring is still likely to be left to an individual.5
Effects of dementia on caregivers
Caregivers face many obstacles as they balance caregiv-
ing with other demands, including child rearing, career,
and relationships. They are at increased risk for burden,
C l i n i c a l r e s e a r c h
stress, depression, and a variety of other health compli-
cations.26The effects on caregivers are diverse and com-
plex, and there are many other factors that may exacer-
bate or ameliorate how caregivers react and feel as a
result of their role. Numerous studies report that caring
for a person with dementia is more stressful than caring
for a person with a physical disability.25,27,28
Two models of factors leading to caregiver stress are use-
ful. In the Poulshock and Deimling29model, dementia
leads to a burden of care which can manifest as strain in
a number of ways that can be exacerbated (eg, by behav-
ioral disturbance, physical or psychological ill-health in
caregiver) or ameliorated (eg, by support, mature coping
mechanisms) (Figure 1). Pearlin and colleagues’30model
of caregiver stress outlines four main areas that con-
tribute to caregiver stress: the background context (such
as level of support and impact of other life events), the
primary stressors of the illness (such as the level of help
required by the patient and behavioral and psychologi-
cal problems in dementia [BPSD]), secondary role strains
(such as family conflict and social life), and intrapsychic
strains such as personality, competence, and role captiv-
ity of the caregiver (Figure 2).30,31In Campbell and col-
leagues’31review of the model, the strongest predictors of
caregiver burden were sense of “role captivity” (carer
feelings of being “trapped” in their role), caregiver over-
load (eg, fatigue and burnout), adverse life events outside
of the caregiving role and relationship quality.
Objective burden reflects the dependency of the person
with dementia and the level of behavioral disturbance.
Subjective burden or strain
Subjective strain is the appraisal of burden by the care-
giver, including their evaluation of the physical and emo-
tional impact, their psychological state, and resources.17,32
Subjective strain is only loosely correlated with objective
burden.31Caregivers generally report experiencing some
form of strain, including all the 85 caregivers in the
Sanders (2005) study.17,33
Strain can manifest as psychological morbidity, including
depression and anxiety. A robust relationship between
dementia caregiving and negative effects on psychologi-
cal health has been demonstrated in numerous stud-
ies.31,34,35Rates of depression vary between 23% and 85%
in developed countries,33,36and of anxiety between 16%
and 45%.34,37-39In the developing countries psychiatric
morbidity range from 40% to 75%.10
Levels of psychological distress and stress are signifi-
cantly higher, and levels of self-efficacy, subjective well-
being, and physical health significantly lower, in demen-
tia caregivers than in other caregivers; these differences
are even larger when compared with noncaregivers.40
Many factors may moderate the presence of symptoms:
being female, being a spousal caregiver, additional stress-
ful life events, physical health, family history of mental
health issues, quality of relationship between caregiver
and care receiver, life satisfaction, low levels of self
esteem and mastery, high neuroticism, and levels of
behavioral and psychological symptoms of BPSD.31,39,41
Family caregivers in dementia - Brodaty and Donkin Dialogues in Clinical Neuroscience - Vol 11 .No. 2 .2009
Figure 1. Poulshock and Deimling model of caregiver strain (modified).29
Dependency and problem behaviors
Burden on caregiver
Figure 2. Pearlin et al model of caregiver strain.30
Background and context
2° role strains
2° intrapsychic strains
Dementia caregivers are at an increased risk of various
health problems including cardiovascular problems,
lower immunity, poorer immune response to vaccine,
slower wound healing, higher levels of chronic conditions
(such as diabetes, arthritis, ulcers, and anemia), more doc-
tor visits and use of prescription medications, poorer self-
rated health, decreased engagement in preventative
health behaviors such as exercise, and greater likelihood
of smoking, drinking alcohol, and poor sleep pat-
terns.5,7,42,72-78Caregivers report a greater number of phys-
ical health problems and worse overall health compared
with noncaregiver controls.28,42Those with psychological
morbidity and greater strain are even more likely to have
poor physical health and a higher risk of mortality.41,79
Caregivers often lack social contact and support and
experience feelings of social isolation.41,80Caregivers tend
to sacrifice their leisure pursuits and hobbies, to restrict
time with friends and family, and to give up or reduce
employment.41,81Caregivers who are more satisfied with
their social interactions show fewer negative psycholog-
ical symptoms.53Interventions may assist. One psychoso-
cial intervention significantly increased the number of
support persons for caregivers, their satisfaction with
their support network, and the assistance they received
with caregiving, compared with controls.82
Costs of dementia are high. The worldwide direct costs of
dementia, estimated in 2003 to be 156 billion USD, repre-
senting over 5000 USD per demented person, are but a
fraction of the total costs.84Direct costs include medical
consultations, investigations, pharmaceuticals, provision of
personal and nursing care, and often residential care in the
later stages. In 2005 the care provided by caregivers of peo-
ple with Alzheimer’s disease and other dementias cost the
US at least 83 billion USD.7Comparative figures for
Australia were approximately 3.2 billion AUD (approxi-
mately 2.6 billion USD) in 2002.85
Cost estimates may omit or underestimate the substan-
tial hidden unpaid costs borne by caregivers, which are
substantial. Indirect costs include loss of earnings by
patients and family caregivers as they relinquish or
reduce employment, hours of informal care and mortal-
ity burden.85,86The US Alzheimer’s Association7estimated
that direct and indirect costs total 148 billion USD annu-
ally based on 2005 estimates. In Australia total costs
reached 7 billion AUD, or over 40 000 AUD in total costs
for each individual with dementia.85An important issue
is balancing caregiving and work responsibilities. Almost
60% of US family caregivers of people with dementia are
also employed, of whom two thirds reported that they
missed work, 8% that they turned down promotion
opportunities, and up to 31% that they had given up
work to attend to caregiving responsibilities.3,7
The economic disadvantage associated with caregiving in
the developing world is significant.10Wimo and col-
leagues estimated that direct costs of dementia in emerg-
ing markets and developing countries totaled 13 billion
USD in 2003.10Total costs, including those borne by fam-
ilies are likely to be much higher. On average, 32% of
caregivers in the countries surveyed cut back on paid
work to care for a family member with dementia (includ-
ing 84% in Nigeria). Compensatory financial support was
lacking, very few people received government pensions,
and 45% to 80% received no informal support. While
health care services are cheaper, in relative terms these
families spend a greater proportion of their income on
health care for the person with dementia. Moreover,
caregivers from poorer countries tend to use the more
expensive services of private doctors due to unsatisfac-
tory public services.10
Predictors of and protectors
from caregiver distress
Evidence regarding which variables are associated with
greater and lower levels of strain and psychological mor-
bidity experienced by caregivers (Table I) sometimes con-
flicts. For example, greater caregiver strain has been linked
to both shorter and longer duration of dementia, as
explained by three theories. The adaptation hypothesis
posits that over time caregivers adapt to the demands of
their role.54,55Alternatively, the “wear and tear” hypothesis
proposes that the longer a caregiver remains in his or her
role, the more likely negative outcomes are to occur.56,57A
third theory, the sequestration hypothesis, proposes that
caregivers experiencing greater stress are more likely to
admit their demented relative to a nursing home, thus
removing these individuals from cross-sectional research
correlating caregiver morbidity and dementia duration.86
C l i n i c a l r e s e a r c h
Family caregivers in dementia - Brodaty and DonkinDialogues in Clinical Neuroscience - Vol 11 .No. 2 .2009
Table I. Predictors of and protectors from caregiver distress. FTD, frontotemporal dementia; BPSD, behavioral and psychological problems in
Gender may have no effect when
allowance is made for the increased
likelihood of behavioral disturbances
Evidence about the relationship between
age, gender and psychological morbidity
is inconclusive 39
Most research indicates that caregivers of
people with different types of dementia
experience similar levels of stress52,53
It is important to control for patient
and caregiver age, duration of
dementia, and level of BPSD
Other studies have found no
relationship between duration of
caring and caregiver distress37
Most studies in the developed world
have found no significant relationship
between cognitive decline and
caregiver psychological health39,86,52
Cultural differences may mediate
Depression levels can predict
Coping style may be more associated
with anxiety than depression,
which is related to factors such as
burden and poor health34,37
Cooper and colleagues37found
inconsistencies in the evidence
regarding problem-based versus emotion-
based coping strategies.
Lower strain and
Nonspousal (eg, child or child-in-law)
Living separately to the care recipient
Better financial position/resources41,42,47-49
Types of dementia other than FTD50,51
Fewer neurospsychiatric disturbances
and behavioral problems38,39,61
Preservation of basic functions in the
Positive current and previous relationship
between caregiver and care receiver39
More secure attachment style66
Increasing caregivers’ confidence in
their competence as caregivers,
reduced burden levels69
Problem-focused coping strategies70,71
Positive reappraisal (reframing)37
Greater strain and
Spousal caregivers, particularly
those of younger patients
Cohabiting with the care
Lower income or financial
Duration Shorter duration50,54,55
Severity More neuropsychiatric disturbances
and behavioral problems40,52,58,59
Impairment in basic activities,
particularly incontinence in
the developing world60
Relationship factorsPoorer relationship
quality and low levels of
past and current intimacy38,41,62,63
PersonalityHigh level of neuroticism31
High expressed emotion65
Less secure (or avoidant)
Perception and A low sense of confidence
experience of in the caregiver role31
caregiving roleHigh “role captivity”
—caregivers feelings of being
trapped in their role30,31
Coping strategies Emotion-based coping
Confrontative coping strategies37
Support can come in the form of instrumental support
(helping with daily living needs and housework), emo-
tional support, and informational support (information
and knowledge from both health professionals and from
those who have experienced similar situations). A posi-
tive relationship between social support and psycholog-
ical well-being has generally been found.41,87Support pro-
vides a buffer against burden and stress for caregivers by
increasing the perception that resources are available to
handle stress.87The relationship is complex. There are dif-
ferences between actual and perceived support, formal
and informal support, and instrumental and emotional
support.88Unwelcome support may be more stressful
than helpful.89Gender, race, individual preference, neu-
roticism levels, and culture affect how support is used and
Nursing-home admission and caregivers
The variables most associated with an increased risk of
institutionalization are demographic (caregiver relation-
ship to care recipient, employment, financial resources,
and age), and psychosocial (caregiver burden, caregiver’s
reaction to care recipient problem behaviors, “desire to
institutionalize,” quality of the relationship and caregiver
health).92,93Being employed and balancing too many
demands, or being unemployed and financially unstable
are associated with institutionalization, as are feeling bur-
dened by the caregiver role, difficulty dealing with behav-
ioral manifestations of dementia, poorer relationship and
poorer physical and psychological health.94,95Findings are
inconsistent regarding the effect of age.93,96,97
While nursing home placement helps to reduce the direct
care obligations on caregivers, it does not necessarily
reduce caregiver distress. Relief and reduced stress may
follow institutionalization,41,98but so can guilt, anger, anx-
iety and depression, and financial problems.99,100
Our review here focuses on family caregiver interven-
tions and does not address formal services such as respite
care, day centers, and community services. Psychosocial
interventions may improve outcomes for caregivers and
reduce the likelihood of institutionalization for care
recipients.101Caregiver interventions have been success-
ful at increasing caregiver knowledge, improving mood,
reducing stress and depression levels, and delaying nurs-
ing home placement.102-104The evidence for reductions in
caregiver burden is mixed, possibly because of method-
ological differences in categorizing interventions and in
Factors associated with more successful interventions are
the extent to which they are tailored to the needs of the
individual and address issues to do with subjective bur-
den; whether they involve the caregiver and care recipi-
ent as active participants; and whether they are long-term
as opposed to short-term.102-104One systematic review
concluded that individually tailored behavior manage-
ment therapy over at least six sessions successfully
reduced caregiver distress and burden in both the short
and longer term, but support for the effectiveness of
group therapy teaching general principles of behavior
management was lacking.104Mittelman and colleagues105
demonstrated that individually tailored individual, fam-
ily, and ad-hoc counseling sessions covering topics spe-
cific to individual caregivers successfully reduced care-
giver depression scores over 2 years. Pinquart and
Sorenson103determined that longer interventions were
more successful at reducing depression and the risk of
institutionalization than shorter or “one-off” support or
information sessions. A meta-analysis by Brodaty et al102
reported that the strongest predictor of success for an
intervention was involving the patient in addition to the
caregiver in a structured program, such as teaching the
caregiver how to manage problem behaviors. The meta-
analysis by Brodaty et al102found a small significant over-
all effect of intervention on caregiver burden in addition
to effects on knowledge/abilities, psychological health of
caregivers, subjective wellbeing, and care receiver symp-
toms due to the inclusion of more recent studies which
were found to have stronger effects on burden.
The Seattle Protocols provide a systematic, structured yet
individualized approach to training family caregivers to
reduce behavioral and psychiatric disturbances in people
with Alzheimer’s disease by teaching caregivers to mon-
itor problems, identify possible events that trigger distur-
bances, and develop more effective responses.106It has
been successfully used to improve caregivers’ quality of
life, reduce subjective burden and reactive responses to
dementia care recipients’ problem behaviors,106and to
reduce dementia-related problems including depres-
sion,107agitation108and sleep disturbance.109The Resources
for Enhancing Alzheimer’s Caregiver Health (REACH)
C l i n i c a l r e s e a r c h
multi-site, multicomponent intervention included infor-
mation provision, didactic instruction, role-playing, prob-
lem-solving, skills training, stress management tech-
niques, and telephone support.110The randomized,
controlled trial involving 642 caregivers in ethnically
diverse populations in the US resulted in significantly
lower depression, burden, and care recipient problem
behaviors, and higher self-care and social support in
Caucasian and Hispanic caregivers as compared with
controls but not for African-American caregivers, apart
from better spousal caregiver quality of life.110
Caregiver interventions can delay nursing-home place-
ment. A 10-day structured caregiver intervention pro-
gram delayed institutionalization of care recipients over
7 years without sacrificing the psychological health of
caregivers or increasing usage of health services and
dementia drugs, and with significant cost savings within
3 years.111-113In a 17-year longitudinal study of 406 spousal
caregivers, an intervention program involving individual
and family counseling, encouragement of support group
participation and availability of ad-hoc telephone coun-
seling was found to significantly delay time to nursing
home placement by a median of 1.5 years.101The inter-
vention was also successful at improving caregiver well-
being, as demonstrated by fewer symptoms of depres-
sion, improved reaction to memory and behavior
problems and greater satisfaction with support net-
works.101Other studies have demonstrated up to 9
months’ delay in institutionalization.114,115Interventions
that were flexible, varied, and involved follow-up and an
ongoing relationship between helper and caregiver were
considered key to delaying nursing home placement.102
External factors may impinge on the efficacy of interven-
tions. A randomized controlled trial of five sessions of
family counseling conducted in Manchester, New York,
and Sydney did not increase time to nursing home place-
ment across the whole sample compared with usual care,
but did so at the Australian site. Possible reasons are dif-
ferences in aged care systems and financial disincentives
to institutionalization, and differences in the amount of
counseling provided (more ad hoc counseling was pro-
vided in Sydney).116Pinquart and Sorenson40identified
that multicomponent interventions were more likely
delay time to nursing home placement. However, in the
REACH trial, despite other positive outcomes, institu-
tionalization of care recipients did not statistically signif-
icantly differ between the control and intervention
Recently, researchers have begun to examine the effec-
tiveness of technology-based interventions for caregivers
using computers, telephones, e-mail, and the Internet to
provide support and information to informal caregivers.
Interventions include conference calling among family
members of dementia patients; telephone support systems
with automated messages; stress monitoring and advice;
respite calls for care recipients; online discussion groups;
electronic reminder services; computer based forums and
question and answer sessions (Internet and non-Internet
based networks); e-mail; electronic encyclopedias and
libraries; and computer-based decision support mod-
ules.26,117Eisdorfer and colleagues118found that having
access to technology-based interventions resulted in a
decrease in depression at 6 and 18 months for both white
and Cuban-Americans compared with more traditional
forms of support only. In a review of 15 papers describing
five technology-based interventions for dementia care-
givers, despite inconsistent outcomes and small studies,
there were moderate effects on improving caregiver stress
and depression.117The obvious benefit of such interven-
tions is that they can usually be accessed at all times of the
day and night, at the caregiver’s convenience. Further
research in this area would prove useful.
Caregivers in the developing world face a different set of
challenges that need to be considered in intervention pro-
grams. Dementia is often perceived to be part of normal
aging, and families are less likely to present to health ser-
vices, which in any case are often ill-equipped to meet their
needs.119,120Awareness and understanding about dementia
are lacking and stigma is rampant. A randomized con-
trolled trial evaluated a home-based intervention in Goa,
India consisting of basic education about dementia and
common behavior problems, strategies for managing prob-
lem behaviors, support to caregivers in activities of daily
living, referral to psychiatrists or other medical profession-
als for assistance with BPSD, networking to assist the care-
givers to form support groups, and advice on government
provisions for the elderly. The intervention led to signifi-
cant improvements in caregiver mental health and per-
ceived burden. There were also reductions in the behav-
ioral disturbances and improvements in the functional
abilities of the dementia care recipients, but these were
nonsignificant.119The program used local health and
human resources, making it affordable and easily accessi-
ble. The small sample size (41 caregivers received the
intervention and 40 were controls) was a limitation, and
possibly explained the lack of significance in the impact on
Family caregivers in dementia - Brodaty and DonkinDialogues in Clinical Neuroscience - Vol 11 .No. 2 .2009
the dementia patients’ behavior. Additionally, the 6-month
follow-up period may have been too short to demonstrate
an effect, or to show whether the intervention had a long
term impact on caregiver and care receiver well-being.
Special categories of caregivers
There are certain groups of caregivers who may experience
additional challenges beyond those directly related to care-
giving. Homosexual partners of people with dementia
often feel that existing interventions and support services
do not meet their needs, or address the issues they face (for
instance next of kin rights). Moore121reported that gay care-
givers experienced prejudice and insensitivity in their inter-
actions with health services, lacked social and emotional
support due to efforts to maintain privacy in their relation-
ship, were unable to use employee benefits to assist their
partner with dementia, faced opposition from employers
when attempting to take compassionate leave, and experi-
enced legal difficulties with estate planning.121
People from ethnic minorities, including indigenous
groups, are less likely to have access to and to use men-
tal health services.122-124Contributing factors include a lack
of understanding about dementia, language barriers, or
other communication barriers, lack of GP knowledge of
cultural differences in expression of mental illness and
distress, distrust of Western medicine, ethnocentric atti-
tudes and incorrect assumptions (for instance that cer-
tain ethnic groups will look after their relatives and do
not require services).62,122
People with younger-onset dementia and their caregivers
face additional problems, as they are more likely to be
working and to have dependent children and more finan-
cial responsibilities. Younger caregivers are often unpre-
pared for the task and experience increased burden, will
need to look after the care receiver for a longer period
of time, have fewer appropriate services available to
them and feel more isolated.125-128Particular needs for this
group are early referral to services, appropriate day care
for younger people with dementia, more information and
support at diagnosis for caregivers.129One special group
within this rubric are people with intellectual disability,
who are doubly handicapped if they develop dementia.
Down’s syndrome confers a high risk of developing
Alzheimer’s disease by the sixth decade, leading to chal-
lenges in diagnosis and management.130,131
When a care recipient is in a second (or later) marriage,
particularly when he or she has children from a previous
marriage, it is more likely that disputes will arise about
financial, legal, and guardianship issues. When people
marry close to the time that they begin to dement, further
issues can arise regarding their capacity to marry, the moti-
vation of their partner and possible issues to do with less
well developed feelings of reciprocity and obligation.132,133
A crucial part of helping family caregivers is linking them
with local support, best done through local Alzheimer’s
Associations (see appendix for Web sites). Alzheimer’s
Associations provide information, emotional support,
practical advice, support groups, training programs, help
sheets, toll-free helplines, and useful Web sites. They are
powerful advocates for people with dementia and for their
families with governments and service providers, as well
as funding research.
Family caregivers are integral to quality of life of people
with dementia. The high levels of burden and psychologi-
cal morbidity are well documented, as are factors that pre-
dict which caregivers are vulnerable to these. Interventions
can ameliorate these effects and thereby improve the qual-
ity of the life of people with dementia. The management
of the person with dementia requires a comprehensive
plan that includes a partnership between doctors, health
care workers, and families. Caregivers susceptible to neg-
ative effects can be identified and could be targeted for
C l i n i c a l r e s e a r c h
http://www.alz.co.uk/research/statistics.html. Accessed February 4, 2009.
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Family caregivers in dementia - Brodaty and DonkinDialogues in Clinical Neuroscience - Vol 11 .No. 2 .2009
Familiares que cuidan a personas con
Los familiares que cuidan a personas con demencia, a
menudo denominados los segundos pacientes invisibles,
son determinantes para la calidad de vida de quienes
reciben dichos cuidados. Las consecuencias para el fami-
liar cuidador, aunque en ocasiones son positivas, en gene-
ral resultan negativas; hay una alta frecuencia de carga y
morbilidad psicológica, como también aislamiento social,
enfermedades físicas y restricciones económicas. Se pue-
den identificar los cuidadores que serán vulnerables a los
efectos adversos, como también los factores que reducen
o aumentan la carga y la tensión. Se ha demostrado que
las intervenciones psicosociales reducen la carga y la
depresión, y retrasan el ingreso a residencias especializa-
das en el cuidado de estos pacientes. El manejo integral
de los pacientes con demencia incluye la asociación entre
los profesionales de la salud y los familiares cuidadores,
la derivación a agrupaciones de pacientes con Enfermedad
de Alzheimer y las intervenciones psicosociales cuando
éstas estén indicadas.
Les aidants familiaux des patients atteints
Souvent appelé « les seconds patients invisibles », les
aidants familiaux, qui s’occupent des patients atteints de
démence sont essentiels à leur qualité de vie. Les consé-
quences de la maladie sur cet entourage sont parfois
positives mais généralement négatives avec une charge
et une morbidité psychologique élevées, un isolement
social, une altération physique et des difficultés finan-
cières. Il est possible d’identifier les aidants qui seront vul-
nérables de même que les facteurs qui améliorent ou
aggravent leur charge et leur stress. Il existe des interven-
tions psychosociales susceptibles de diminuer la charge et
la dépression des aidants familiaux et de retarder
l’admission du patient en institution spécialisée. La prise
en charge globale du patient atteint de démence
demande une collaboration entre les professionnels de
santé et les aidants familiaux, une orientation vers les
associations de patients atteints de la maladie
d’Alzheimer et des interventions psychosociales lors-
qu’elles sont indiquées.
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Alzheimer’s Disease International: www.alz.co.uk
Alzheimer’s Association USA: www.alz.org
Alzheimer’s Europe: www.alzheimer-europe.org
Alzheimer’s UK: www.alzheimers.org.uk
Dementia Advocacy and Support Network International (for people with