http://jgp.sagepub.com/Journal of Geriatric Psychiatry and Neurology

http://jgp.sagepub.com/content/14/4/179The online version of this article can be found at:

 DOI: 10.1177/089198870101400403

2001 14: 179J Geriatr Psychiatry NeurolCathleen M. Connell, Mary R. Janevic and Mary P. Gallant

The Costs of Caring: Impact of Dementia on Family Caregivers  

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179

The Costs of Caring: Impact of Dementiaon Family CaregiversCathleen M. Connell, PhD, Mary R. Janevic, MPH, and Mary P. Gallant, PhD, MPH

ABSTRACT

With the aging of the population, an increasing number of older adults are diagnosed with Alzheimer’s disease or arelated disorder. Most people with a dementing illness will be cared for at home by a family member, who may experi-ence a variety of physical, emotional, financial, and social burdens associated with the caregiving role. The purpose ofthis article is to (a) examine the physical and psychological effects of providing care to a family member with a dement-ing illness, (b) describe the factors that help determine the nature and magnitude of these effects, and (c) discuss severalapproaches to caregiver intervention designed to reduce the negative impact of this challenging role. Sociodemographiccharacteristics (e.g., gender, relationship to the patient, culture, race, ethnicity), caregiver resources (e.g., coping, socialsupport, availability of a companion animal), and personal characteristics (e.g., personality, health behaviors) shapethe dementia caregiving experience and have implications for interventions designed to prevent or lessen the stress andburden that often accompany the role. (J Geriatr Psychiatry Neurol 2001; 179-187).

With the aging of the population, an increasing numberof older adults are diagnosed with Alzheimer’s disease ora related disorder. The majority of people with a dement-ing illness will be cared for at home by a family member.2 2

Caring for a relative with dementing illness has been asso-ciated with a variety of physical, emotional, financial, andsocial burdens2,3 and is thought to be particularly chal-lenging because of the characteristic cognitive, behavioral,and affective losses associated with the progression of thediseased Dementia caregivers provide more care andassist with a greater variety of tasks than nondementiacaregivers, resulting in employment complications, fam-ily conflict, mental and physical health problems, anddecreased time for leisure activities. 1

The purpose of this article is to (a) examine thephysical and psychological effects of providing care to afamily member with a dementing illness, (b) describe thefactors that help determine the nature and magnitudeof these effects, and (c) discuss several approaches to care-giver intervention designed to reduce the negative impactof this challenging role. Specifically, the following topicswill be addressed: (a) the negative and positive impactof caregiving, (b) sociodemographic predictors of caregiveroutcomes, (c) mediators and moderators of the caregiv-

ing stress process, (d) caregiver interventions, and (e)future directions for the design and evaluation of care-giver interventions.

NEGATIVE AND POSITIVE IMPACTS OFCAREGIVING

The extent to which the process of providing care to a fam-ily member with a dementing illness affects the physi-cal and mental health of the caregiver has received a greatdeal of attention in the literature.’ This issue has impor-tant policy implications because negative health out-comes can compromise the ability of family members toprovide continued care.4 A broad range of physical healthmeasures have been used in the caregiver literature,including those that assess self-rated physical health; thepresence of chronic conditions, illnesses, and symptoms;health service use; medication use; health-related behav-

iors ; and physiologic indices. In terms of mental health,the caregiver literature has assessed the impact of therole on depression, anxiety, and psychotropic drug use.5

Overall, the evidence linking dementia caregiving tonegative mental health outcomes is compelling and con-sistent. Caregiving has been associated with increasedlevels of depressive symptoms and a higher prevalenceof clinical depression and anxiety. Psychotropic druguse is also higher among caregivers than noncaregivers.5 5The association between caregiving and negative phys-ical health outcomes is more equivocal. Although care-givers report that their overall health is worse thannoncaregivers, evidence of the impact of caregiving onchronic illnesses and conditions, self-reported symp-toms, health behaviors, cardiovascular functioning, andhealth care use is inconsistent. 5,6

From the Department of Health Behavior and Health Education (Dr.Connell and Ms. Janevic), School of Public Health, University ofMichigan, Ann Arbor, Michigan, and the Department of Health Policy,Management, and Behavior (Dr. Gallant), School of Public Health, StateUniversity of New York, Albany, New York.

Reprint requests: Dr. Cathleen M. Connell, Department of HealthBehavior and Health Education, School of Public Health, Umversityof Michigan, 1420 Washington Heights, Ann Arbor, MI.

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Although a great deal of research has focused on thenegative mental and physical health outcomes associatedwith caregiving, a growing body of literature has exam-ined a wide range of positive outcomes. These outcomesinclude enjoyment of the role, positive affect, satisfaction,well-being, role gain, uplifts, rewards, gratification, mas-tery, growth and meaning, and benefits.7-12 A broader con-ceptualization of the impact of caregiving that includessuch positive outcomes has important implications forintervention. Instead of an exclusive focus on avoidingnegative outcomes (e.g., depression, burden), interven-tions can be specifically designed to enhance a varietyof positive outcomes, including mastery, self-esteem,self-efficacy, competence, and health behaviors (e.g.,exercise, weight management).

SOCIODEMOGRAPHIC CORRELATES OFCAREGIVING OUTCOMES

Despite the predominant focus on negative impacts ofcaregiving in the literature, research has demonstratedthat the effects of caring for a family member withdementia are not uniform across caregivers. Differencesin caregiving-related outcomes may be attributed, inpart, to the type and extent of assistance that caregiversprovide, which, in turn, may be related to gender, cohort,ethnicity, and social class. 3 In addition, certain caregiversmay be more vulnerable than others to negative out-comes, depending on their health status and/or access tocommunity-based services and psychosocial and tangi-ble resources. In the following section, empirical researchthat documents differences in dementia caregiving out-comes by gender, relationship to the patient, andrace/ethnicity is summarized. Two caveats are worthnoting. First, because these characteristics are not mutu-ally exclusive (e.g., male caregivers are more likely to bespouses of the care recipient than female caregivers, 14non-Caucasian caregivers are less likely to be spousesthan Caucasian caregivers’5), it is important to considerpossible confounders when comparing outcomes amongsubgroups of caregivers. 16 Second, interactions amongthese categories (e.g., race and gender) may be moreimportant than &dquo;main effects&dquo; in their influence on

important caregiving outcomes.17

Gender and Caregiving OutcomesRecent empirical evidence suggests that the nature ofthe caregiving experience and its effects on health differbetween women and men. In a review of gender differencesin caregiving, Yee and Schulz 18 discovered that most stud-ies reported that female caregivers experienced moredepressive symptoms, anxiety, and general psychiatricsymptoms than their male counterparts. In addition, con-sistent gender differences emerged in the type and amountof caregiving tasks performed. Specifically, women spendmore time on caregiving tasks than men and are moreinvolved in hands-on personal care, shopping, and pro-viding transportation. Similarly, among adult childrencaring for a parent, daughters are more likely than sonsto be involved in household tasks (e.g., cleaning, cooking).

Based on the studies included in their review, Yee andSchulz18 reported that women perceive greater strain and

burden relating to caregiving than men and are morelikely to experience strain from role conflicts (e.g., withwork responsibilities and social activities). In additionto being more likely to assume a caregiving role in thefirst place, women appear to relinquish the caregivingrole later than men and to receive less informal supportfrom friends and family members. Finally, the healthbehaviors of women may be more adversely affected bycaregiving, although there is relatively little researchavailable on this topic.19

Several researchers have speculated about the mech-anism by which gender differences might result in dis-parities in caregiver outcomes. 14,20,21 For example,Corcoran2° suggests that male and female dementiacaregivers are likely to have different types of &dquo;man-agement plans.&dquo; Specifically, women are more likely toattempt to be &dquo;supercaregivers&dquo; and accomplish manytasks simultaneously, whereas men are likely to plan asmaller number of tasks and accomplish them in a lin-ear manner, leaving more time for rest and leisure.

In spite of consistent findings that suggest a generaladvantage for male caregivers over their female coun-terparts, three points should be kept in mind. First,even within gender, there is great variation in the natureand impact of caregiving.22 Second, gender differences incaregiving tasks may be more pronounced among adultchildren than spouses. Third, men are certainly notimmune to the deleterious effects of caregiving,22,23although there is comparatively limited research onmale caregivers. An exception is a small body of quali-tative work that focuses on the experience of caregivinghusbands and sons.22-24 In this work, male caregiversreported being highly involved in hands-on personalcare and to be grappling with strong negative emotions.Unique difficulties experienced by male caregivers include(a) heightened social isolation among husbands becauseof the traditional role of the wife in forging and main-taining social relationships24 and (b) a lack of comfort withformal services, like support groups, that are generallynot oriented toward men.23

Relationship to Patient and CaregivingOutcomesIn general, the adult children and spouses of peoplewith dementia are the most likely to assume the care-giving role,’ although norms for who provides care aregreatly influenced by culture and ethnicity. Recentresearch confirms that spouse caregivers exhibit higherlevels of depression and stress and lower levels of life sat-isfaction and participation in social activities than otherfamily caregivers. 5,12 This heightened susceptibility maystem from the fact that spouses provide the most com-prehensive care for dementia patients, maintain thecaregiving role for longer periods, care for the mostimpaired individuals, and spend the most hours perweek on caregiving tasks. z6,25 The vulnerability of spousecaregivers may also stem from the greater likelihood ofthis group to have health problems associated with olderadulthood, such as chronic illnesses and diminishedphysical and functional capacity.

Although spouse caregivers are especially vulnera-ble to negative physical and mental health outcomes,adult children caring for parents with dementia also

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face unique challenges. For example, most are adultdaughters who are likely to be juggling multiple roles,26such as parenting and employment outside the home. 27There is also evidence that adult-child caregivers fre-quently experience conflict with their siblings over care-giving issues, 28 resulting in caregiver burden and poormental health outcomes.

In addition to the relationship of the caregiver to thepatient, whether a caregiver lives with the care recipi-ent has important implications for caregiving outcomes.For example, Tennstedt et a129 found that co-residencewas more important than relationship to the patient indetermining both the level of informal care providedand the amount of formal services used. Specifically, co-resident caregivers provided more informal care andrelied less on formal services than caregivers who did notlive with the patient.

Culture/Ethnicity/R,ace and CaregivingOutcomesA rapidly growing body of literature has examined vari-ations in the dementia caregiving experience across racialand ethnic groups. Such differences may result from cul-tural influences on attitudes and values related to care-giving, structural factors such as socioeconomic status anddiscrimination, or preexisting differences in health sta-tuS.1,30--32 In general, empirical studies have focused largelyon differences between African-American and Caucasian

caregivers (for a review, see Connell and Gibson 15),although more recent comparative studies have alsoexamined the experience of Latinos, Asians, and AsianAmericans (for a review, see Janevic and Conne1133).

When comparing African-American and Caucasiancaregivers, Caucasian caregivers are more likely to bespouses, 15,33 and the extended family tends to be moreinvolved in the informal caregiving networks of AfricanAmericans.34 Caucasian caregivers generally report higherlevels of depression than their African-American coun-terparts and appraise caregiving-related problems asmore stressful.15~33 Differences between African-Americanand Caucasian caregivers in the impact of caregiving onpsychological outcomes have been attributed to two fac-tors. First, family caregiving may be both more norma-tive and valued in African-American culture. Second,African Americans in general experience greater exposureto and opportunities for mastery of life stress. 35,36

Although the empirical research that includesdiverse groups of dementia caregivers is limited, sev-eral studies are worth noting. Latino caregivers ofdementia patients may be particularly vulnerable todepression and strain 37,38 and may have greater unmetservice needs than Caucasians and African Ameri-cans.39 Aranda and Knight3° provide a comprehensiveexamination of how Latino ethnicity may influence thecaregiving stress process, for example, via culturally spe-cific appraisals of burden and social network configu-rations. A recent study found that althoughKorean-American caregivers reported higher levels offamilism than Caucasian caregivers, they also reportedhigh levels of depression, anxiety, and burden.4° Anotherrecent study found that Chinese-American caregiversmay have more unmet needs for mental health servicesthan Caucasian caregivers. 39

Overall, empirical work suggests that race, ethnic-ity, and culture influence important outcomes amongcaregivers of dementia patients, although the precisepathways of these relationships is poorly understood.Although the body of empirical evidence on caregivingoutcomes among racial, ethnic, and cultural groups is stillrelatively small, guidelines for practitioners workingwith diverse groups, including American Indians, areavailable.32 Because of the growing diversity of the olderadult population in the United States, ensuring the cul-tural appropriateness and accessibility of caregiver pro-grams for traditionally underserved groups is a highpriority for the years ahead.

MEDIATORS AND MODERATORS OF THECAREGIVING STRESS PROCESS

That the demands of caregiving may result in adverseoutcomes (i.e., stress, burden, depression, poor self-ratedphysical health) has long been accepted in the literature.More recent attention, however, has focused on the mech-anisms by which these caregiver outcomes occur. Much ofthe relevant research has incorporated a stress and cop-ing framework, which represents the caregiving experiencein terms of objective demands and stressors, contextual fac-tors, appraised stress, mediators such as coping and socialsupport, and physical and mental health outcomes. Thisframework has been useful in enhancing our understandingof why some caregivers are better able than others toadapt to the caregiving situation and has demonstrated thatmuch of the observed variability in caregiving outcomes canbe attributed not only to the status of the care recipient butalso to the personal characteristics and resources thatcaregivers bring to the situation. 5,41

Originally based on the work of Lazurus and Folk-man,42 the stress and coping framework has been appliedspecifically to caregiving by a number of investiga-tors. 10,27,43,44 This framework suggests that the objectivestressors of the caregiving situation (e.g., type andamount of care required) are experienced by the caregiverwithin the context of a variety of personal and environ-mental characteristics (e.g., age, gender, personal health,personality characteristics). Caregivers develop anappraisal or perception of the stressfulness of the care-giving demands they face in light of these contextual char-acteristics. The complexity of this process accounts forthe wide variability of perceived stress levels exhibitedby caregivers when faced with similar objective caregivingdemands. The following sections highlight selected medi-ators and moderators of the stress process, including carerecipient status, coping, social support, personality char-acteristics, health behaviors, and companion animals.

Care Recipient StatusThe status of the care recipient is often used to repre-sent the objective demands of the caregiving situation.The extent and nature of the care recipient’s cognitive,functional, and/or behavioral impairments determine, inlarge part, the type and extent of caregiving tasksrequired of the caregiver. Although only weak relation-ships between objective caregiving demands and care-giver outcomes were reported in early caregiving

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research,43 subsequent research has elucidated some ofthe specific aspects of patients’ status that are most pre-dictive of caregiver outcomes. For example, based on acomprehensive review of caregiving studies, Schulz et al5reported that care recipient problem behaviors but notlevel of cognitive and functional impairment were pre-dictive of negative mental and physical health outcomesamong caregivers, a finding that has been confirmed inmore recent research.45-50

To summarize, what appears to be important tocaregiver outcomes is not the underlying cognitive sta-tus of the care recipient but the resulting behavioralimpairments that accompany cognitive impairment. Inaddition, as predicted within a stress and coping frame-work, behavioral disturbances appear to influence care-giver outcomes indirectly through caregivers’ perceptionsof stress, burden, and the patients’ cognitive deficits.~’~

CopingCoping, defined as the cognitive and behavioral attemptsto manage specific demands that are appraised as stress-ful, is an integral part of the stress process. An individ-ual’s repertoire of coping skills and responses representsan important resource for the caregiver.42 Coping strate-gies have been commonly classified as problem or emo-tion focused. Problem-focused coping refers to efforts tochange a stressful situation in some way, whereas emo-tion-focused coping refers to more internal strategiesthat are used to manage one’s emotions. 8,52

Caregiving research has clearly demonstrated thatemotion-focused coping is associated with greater levelsof distress, whereas more active, problem-focused cop-ing is associated with greater caregiver well-being.8,43,53,54Although attempts to cope with caregiving stress thatfocus on regulating emotions through denial, avoidance,or suppressing feelings may be helpful in the short run,they have been found to be ineffective in providing thecaregiver with the sense of control that is beneficial toemotional well-being in the long term.8 Even in situationsthat are relatively unchangeable, coping efforts thatattempt to reframe the situation in a more positive lightand seek guidance and support appear to be beneficialwith respect to caregiver outcomes.43>53

Social SupportSocial support is an important resource in the caregiverstress process. Caregivers who belong to a supportivesocial network may perceive their situations as less stress-ful or burdensome because of the emotional, tangible, andinformational support that such a network provides.Indeed, abundant empirical evidence supports this impor-tant role of social support. In a review of caregiver outcomes,Schulz et a15 found a consistent relationship between lowerlevels of social support and poorer physical health amongcaregivers and mixed evidence for a relationship betweensupport and psychiatric morbidity. Several recent studieshave documented that lower levels of informal social sup-port are related to increased burden and depression amongcaregivers,11,47,48 whereas greater levels of social support arerelated to positive caregiver outcomes.53 As is true of therelationship between social support and health outcomesin other populations, caregivers’ satisfaction with theirsocial network and the perceived availability of social sup-

port is perhaps more important than the actual amountof informal help received. 10,55

Although social support has been associated with pos-itive outcomes, the responsibilities and demands of thecaregiver role frequently limit opportunities for socialinteraction and exchanges.3 For example, research hasdemonstrated that caregivers of patients who are expe-riencing significant behavioral and functional impair-ments receive less informal social support and are lesssatisfied with their social networks than those caring forless impaired patients.11,4s In the case of spouse caregivers,social activities and roles once shared as a couple (e.g.,going out to a restaurant for dinner, playing cards withfriends) may become more limited over time because ofthe symptoms and impairments imposed by the disease.

Personality CharacteristicsThere is growing evidence that personality traits are animportant contextual factor in the caregiver stress processthat may influence cognitive appraisal. Some caregiversmay be more likely than others to appraise a particularcaregiving situation as stressful because of underlyingpersonality characteristics and thus may be more sus-ceptible to subsequent distress and adverse health out-comes. 56 In addition, caregivers with certain personalitycharacteristics may be less effective in garnering effec-tive social support to help them face the demands oftheir situation.41

Two specific personality traits-optimism and mas-tery-have been linked to positive mental and physicalhealth outcomes among caregivers.41,56,57 Alternatively,caregivers with high levels of expressed anger report ahigh level of burden.58 Neuroticism, the underlying ten-dency to experience emotional distress, appears to beespecially predictive of adverse caregiver outcomes,including perceived strain and burden 56,59 and negativephysical and mental health. 56,57,59 It also appears that themental and physical health effects of neuroticism areexerted both directly and indirectly through perceivedstress. 41,56,59 In other words, neurotic traits directlyincrease the risk for adverse health outcomes, and care-givers with more neurotic traits are more likely toappraise caregiving demands as stressful, which has anindirect effect on health outcomes.

Health BehaviorsIn recent years, the role of health behaviors has received

increasing attention in the caregiver stress process.Empirical evidence suggests that the performance ofhealth behaviors (e.g., physical activity, maintainingappropriate body weight, limiting alcohol consumption,and not smoking) can be negatively influenced bystress. 60--64 Indeed, it is easy to imagine how the demandsof providing care to a family member with dementiamay limit opportunities to engage in positive healthbehaviors, such as exercise, and may promote relianceon negative health behaviors, such as smoking.

A small but growing body of literature provides evi-dence that health behaviors may represent an importantmediator of health outcomes in the caregiver stressprocess. Compared to noncaregivers, caregivers are morelikely to experience inadequate time for sleep, self-care,and exercise. 65,66 Dementia caregivers, in particular,

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report sleeping less and having more sleep problems,67,68lower levels of exercise,68~69 and significant weightgainss9~’° compared to noncaregivers. In addition, thereis empirical evidence of intriguing gender differences inhow caregiving stress may influence health behaviors.In a study of 233 spouse caregivers of dementia patients,for example, Gallant and Connell’9 found that femalecaregivers were significantly more likely than male care-givers to report sleeping less and gaining or losing a sub-stantial amount of weight since caregiving began,whereas male caregivers were more likely to reportdecreased levels of physical activity. In a model explor-ing the mechanisms by which caregiving may impacthealth behaviors, it was discovered that caregivers whoperceived greater levels of burden, spent more hoursper day providing care, and had less confidence in theirability to take care of themselves and their spouse weremost at risk for experiencing negative health behaviorchange.19

Some studies, however, have found that caregiversmay not be at a disadvantage in terms of their healthbehaviors. For example, a few studies have demon-strated that smoking rates and alcohol consumptionmay be similar or even lower among caregivers than non-caregivers.65,67,68,71 The evidence to date, however, stronglysuggests that dementia caregivers are at risk for weightgain, declines in physical activity, and sleep problems.6 6

Companion AnimalsAlthough the role of pet ownership has received littleattention in the caregiver literature, the health benefitsof owning a companion animal have been extensivelydocumented, particularly in terms of increasing moraleand subjective well-being. 72,73 The social benefits of petownership have also been noted, including reducing lone-liness ; providing a feeling of security; offering compan-ionship ; providing a daily routine and a source of realityorientation; encouraging physical activity, play, and relax-ation ; providing a feeling of being needed; and offeringfamiliarity and reassurance. 74 To date, however, little isknown about how companion animals may moderate thecaregiver stress process. A recent study, however, sug-gested that pet dogs reduce cardiovascular stress amongspouse caregivers by influencing their reaction to situa-tions beyond their control.’5 Additional research is neededto document the role that companion animals play in thelives of caregivers and the family members they care forand how the bonds between people and their pets maychange as a function of caregiving responsibilities. Ifsuch research confirms that the companion animal bondis beneficial to caregivers, community-based programscould be established to help support and promote petownership for interested caregivers.

CAREGIVER INTERVENTIONS

Given the nature and extent of the demands of the care-

giving role, it is not surprising that a wide array of ser-vices and programs have been developed to assist familymembers with their responsibilities. Much of the supportfor a family member with dementia is provided &dquo;infor-mally&dquo; by members of the caregiver’s social network,26

although community-based services and programs alsoplay an important role in assisting dementia caregivers(e.g., housekeeping, personal care, transportation ser-vices). In addition, a vast array of interventions have beendesigned specifically to prevent, delay, or lessen the neg-ative impact of dementia caregiving on health and well-being and to enhance the ability of family members toprovide at-home care. These interventions have evolvedover the years to become more sophisticated’6 and havebeen the subject of several major reviews.7&dquo;78

In general, interventions for dementia caregiversattempt to influence the stress process by enhancingsocial support, teaching skills for caregiving tasks, or help-ing caregivers to manage negative emotions.79 Most care-giver interventions can be categorized within Bourgeoiset al’s’6 typology: (a) support groups; (b) counseling, edu-cation, and skills training interventions; (c) respite care;and (d) comprehensive, multicomponent interventions.More recently, interventions that attempt to modify thecaregiving environment and those that target the healthbehaviors of caregivers represent promising additions tothe caregiver intervention &dquo;arsenal.&dquo; Each of these inter-vention types is described briefly below.

Support GroupsPeer- or professionally led support groups provide avenue for caregivers to discuss problems and concernswith others in similar situations and often include aneducational component.&dquo; Despite the popularity andproliferation of dementia support groups, however, thebenefits of participation, in terms of measurable outcomesrelated to caregiver psychological health, are unclear.Most published evaluations of support groups have reliedexclusively on clinical impressions or postgroup evalu-ations. 76,77 In general, research has shown that supportgroup participation is successful at disseminating infor-mation and increasing informal social networks but hasless consistent effects on outcomes such as burden andlocus of control. 76,77 Nonetheless, satisfaction with sup-port groups tends to be high, 77 suggesting that they meetan important need of dementia caregivers.

Counseling, Education, and Skills TrainingSeveral types of interventions have been designed to helpfamily members cope with the emotional and tangiblechallenges of caregiving, including individual counselingby professionals and peer- or professionally led groupcounseling. 76 In general, individual counseling seems tobe more effective than group counseling in terms of influ-encing psychological outcomes, although group counsel-ing more effectively enhances social support. 76,80

Other interventions are designed to teach caregiversspecific skills. Recent examples of such interventionsinclude programs that teach caregivers how to (a) alle-viate hassles in communication with the care recipi-ent,81 (b) improve the care recipient’s eating and dressingabilities,82 and (c) engage the care recipient in cognitivestimulation.83 Although such skills-training interven-tions have been successful in terms of teaching practi-cal techniques to caregivers, the evidence that suchprograms can affect global outcomes, such as depressionand burden, is equivocal.’6

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Many programs described in the literature includeelements of counseling, education, and skills training. Atypical example is the Carer Education Programme(CEP).84 The CEP consisted of eight 2-hour sessions cov-ering general information on dementia and availableservices, management of everyday problems, reality ori-entation for care recipients, communication techniques,coping with loss, stress management, hospitalization, andlegal issues. The results of an evaluation of the pro-gram indicated that CEP participants increased knowl-edge about dementia at postprogram follow-up.Participation in the program, however, was not signifi-cantly related to burden, psychological well-being, orquality of life. 84

Respite CareRecognition of the around-the-clock, all-consuming natureof dementia caregiving has led to the creation of a num-ber of programs that offer temporary relief from care-giving duties. Respite for caregivers may include in-homerespite, in which a trained provider assumes caregivingor other household tasks, short-term institutionalizationof the care recipient, or adult day care.78

Despite the intuitive appeal of providing respite forcaregivers, studies that have examined its benefits haveyielded inconclusive findings. In a meta-analysis, Knightet al8° found that respite yielded a moderately strongeffect in the expected direction on psychological distress.Later reviews, however, have concluded that the effectsof respite are inconclusive because of methodologic lim-itations, including the lack of prospective studies (Ken-net et a178) and reliance on self-selected samples.’’6Bourgeois et a176 also suggested that many respite inter-ventions do not provide a sufficient amount of relief (i.e.,frequency and duration) to maximize the psychologicalbenefits to caregivers.

As with other types of caregiver services, respiteprograms are frequently underused, 85 the explanation forwhich has been called &dquo;one of the major unansweredquestions in the caregiving field.&dquo;g6 Some researchers havenoted a reluctance on the part of caregivers to use respiteservices, 76 whereas others have suggested that theirinconsistent availability and a lack of awareness amongcaregivers create significant barriers to use. 87 A recentstudy indicated that the characteristics of the caregiver(e.g., having a back-up caregiver available), the carerecipient (e.g., the need for assistance with Activities ofDaily Living), and service characteristics (e.g., the avail-ability of transportation) are all likely to influence thedecision whether to seek and use respite services.85Clearly, more research is necessary to maximize the useand effectiveness of respite interventions.

Comprehensive, Multicomponent InterventionsMulticomponent interventions &dquo;blanket caregivers witha diversity of services in the hopes that a combinationof components will impact on a caregiver’s unique needsat the appropriate time.&dquo;76 This comprehensive approachmay be the most likely to show positive results such asdecreased burden and improved quality of life.’8 The suc-cess of multicomponent interventions may be attrib-utable to the wide diversity of caregiver needs and to

a synergistic effect among program components. Forexample, a multicomponent intervention designed forspouse caregivers and their families successfully reduceddepression among participants and postponed nursinghome placement of care recipients.88,89 This ongoingprogram consists initially of counseling/education ses-sions and support group meetings, after which theintervention is participant driven (i.e., telephone coun-seling is available to caregivers as needed). It has beennoted, however, that despite the impressive potentialof multicomponent interventions to have a positiveimpact on the caregiving experience, researchers eval-uating these programs are often unable to isolate whichof the intervention components are responsible for thedemonstrated outcomes or which subgroups of care-givers benefit the most.76,78 In addition, these programstend to be expensive and difficult to replicate withoutsignificant programmatic, community, and financialresources.

Interventions That Target the EnvironmentIn addition to the large number of psychoeducational andrespite programs for caregivers, a few recent interven-tions have targeted the caregiver’s home environment.The potential impact of such interventions is consider-able, given that the physical and social aspects of thehome environment can affect both care recipient behav-ior and caregiver perceptions of control.9° Gitlin et al9oconducted an intervention consisting of five home visitsby occupational therapists during which caregivers wereshown how to make modifications in the physical (e.g.,reducing visual and auditory stimuli) and social (e.g.,learning how to break down tasks for the care recipient)environments. At 3-month follow-up, spouse caregiversin the treatment group reported being less upset at thepatient’s behavioral problems compared with caregiversin the control group. In addition, women and minoritycaregivers in the treatment group experienced increasedcaregiving self efficacy.9°

Self-care InterventionsAs noted earlier, a growing body of research suggests thatdementia caregiving constrains the practice of self-carebehaviors, such as exercising, eating nutritiously, and get-ting enough rest.65,91 However, few interventions have tar-geted these behaviors, despite the potential of suchprograms to improve psychological and physical healthand to provide an alternative to caregivers who are notinterested in participating in more traditional psycho-educational programs. One of the only published exam-ples of a physical activity intervention directed atdementia caregivers showed promising but inconclusiveresults.92 A demonstration of this home-based exerciseprogram was successful in improving anger expressionand blood pressure among participants but did not havea significant impact on depression and burden. A ran-domized, controlled trial by the authors of a telephone-based at-home program designed to increase physicalactivity among female spouse caregivers of dementiapatients is currently under way. The results will helpdetermine the impact of such programs on important out-comes related to physical and mental health (e.g., phys-

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ical functioning, depression) and the caregiving experi-ence (e.g., burden).

CAREGIVER INTERVENTIONS: SUMMARYAND FUTURE DIRECTIONS

A vast array of programs have been developed for demen-tia caregivers, with the goals of (a) alleviating caregiv-ing stress, (b) improving health and well-being, and (c)enabling caregivers to provide at-home care for longerperiods prior to institutionalization of the care recipient.These interventions range from simple peer-led supportgroups to complex, multifaceted programs involvingcounseling, skills training, respite, and other services.More recent interventions have also targeted the phys-ical environment and caregiver self-care behaviors.Although virtually all programs have resulted in somelevel of success in achieving their goals, including highlevels of caregiver satisfaction, there is no &dquo;single, eas-ily implemented, and consistently effective method foreliminating the stress of caregiving.&dquo;7g Moreover, theseprograms reach only a limited number of potentiallyeligible caregivers.

Several future directions for caregiver interventionsshould be considered. First, specific interventions shouldbe targeted at caregivers defined by demographic char-acteristics or needs (e.g., gender, socioeconomic status,caregiver physical health, relationship to patient, orpatient’s dementia stage). 5,76,80 Second, in the context ofa cost-conscious health care system, more attentionshould be paid to determining the appropriate &dquo;dosage&dquo;of intervention required to produce the desired effect and,in the case of multicomponent interventions, whichaspects of the intervention are most effective for whichsubgroups of caregivers.7s~$° Similarly, the &dquo;costs&dquo; of care-giver interventions should be documented and reportedso that program planners can be better informed aboutthe resources needed to replicate or adapt existing pro-grams. In addition to personnel costs for staff hired tolaunch new programs, other budget considerationsinclude staff training, program materials, recruitmentefforts, and evaluation, to name just a few.

Many of the published evaluations of caregiverinterventions have focused on global mental and phys-ical health outcomes, particularly caregiver burdenand depression. Although these outcomes may be appro-priate to assess the success of particular programs,other, more proximal measures that are directly relatedto the content and curriculum of the intervention arealso warranted. For example, interventions that focuson self-care behavior should examine program impacton exercise, diet, and sleep patterns, as well as moreglobal outcomes. Similarly, increased attention shouldbe afforded to process evaluation in caregiver inter-vention research, particularly to determine the extentto which a program was implemented as planned. Asdiscussed previously, the impact of caregiver inter-ventions on a range of positive outcomes should also beconsidered. 10,11

To address a persistent gap in the literature, strate-gies are needed to recruit ethnically diverse groups ofparticipants to caregiving intervention research. The

overwhelming majority of participants in interventionsdescribed in the literature are Caucasian.93 However, inlight of the rapid ethnic diversification of the olderadult population in the United States and evidence thatcaregivers from nonmajority groups may have uniqueneeds and experiences, 15,30,33,53 the design and testing ofinterventions for caregivers of diverse backgroundsshould be a priority. The results from Resources forEnhancing Alzheimer’s Caregiver Health (REACH), alarge-scale, multisite initiative funded by the NationalInstitute on Aging, should be very useful in guidingthis effort. REACH was designed to evaluate the effec-tiveness of a variety of caregiver intervention strategiesto reduce burden and depression and improve qualityof life among diverse samples of family caregivers. TheREACH interventions were designed to be culturally sen-sitive and appropriate for ethnic minority caregivers.93Finally, strategies that rely on information technologywill make computer-based education and support animportant means of program delivery in the nearfuture. 78,94

In summary, a wide array of factors, both intrinsicand extrinsic, shape the impact of the dementia care-giving experience. These factors include sociodemo-graphic characteristics (e.g., gender, relationship to thepatient, culture, race, and ethnicity), caregiver resources(e.g., coping, social support, availability of a companionanimal), and personal characteristics (e.g., personality,health behaviors). Interventions designed to alleviate thepotentially negative impact of the role are typicallydesigned to increase access to resources and teach newskills. The mixed success of the caregiver interventionsreported in the literature to date illustrates the pro-found nature of the stress and burden of caregiving andpresents challenges to those working to improve thehealth and well-being of this growing and importantpopulation.

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