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A future for family care and dementia interventionresearch? Challenges and strategiesS. H. Zarit a & E. E. Femia aa Department of Human Development and Family Studies , Penn State University , USPublished online: 25 Feb 2008.

To cite this article: S. H. Zarit & E. E. Femia (2008) A future for family care and dementia intervention research?Challenges and strategies, Aging & Mental Health, 12:1, 5-13, DOI: 10.1080/13607860701616317

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Aging & Mental Health, January 2008; 12(1): 5–13

A future for family care and dementia intervention research?

Challenges and strategies

S. H. ZARIT & E. E. FEMIA

Department of Human Development and Family Studies, Penn State University, US

(Received 18 January 2007; accepted 15 May 2007)

AbstractDespite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatmenttrials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the researchstrategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approachesmay have contributed to their limited findings of improvement. We identify some of the methodological issues that mayhave affected previous trials and suggest strategies for addressing these issues.

Introduction

It is now widely recognized that caring for an older,disabled relative, particularly one with cognitive ormental health problems, can have adverse effectson the caregiver’s own physical and mental health(e.g. Aneshensel, Pearlin, Mullan, Zarit, &Whitlatch 1995; Schulz & Beach, 1999; Vitaliano,Zhang, & Scanlan 2003). Despite the attention thatcaregiving has received, evidence of empirically-validated treatments to improve caregiver outcomeshas progressed slowly. Some studies have shownpositive results (e.g. Coon, Thompson, Steffen,Sorocco, & Gallagher-Thompson 2003; Marriott,Donaldson, Tarrier, & Burns 2000; McCurry,Gibbons, Logsdon, Vitiello, & Teri 2005;Mittelman et al., 1995; Mittelman, Ferris,Shulman, Steinberg, & Levin 1996; Mittelman,Roth, Coon, & Haley 2004; Ostwald, Hepburn,Caron, Burns, & Mantell 1999; Smith & Toseland,2006; Teri, Logsdon, Uomoto, & McCurry 1997;Whitlatch, Zarit, & von Eye 1991; Zarit, Stephens,Townsend & Greene, 1998) but many other treat-ment studies have reported weak to moderatebenefits for caregivers of dementia patients(Sorenson et al., 2002).

The first REACH study in the US (Gitlin et al.,2003) was a notable example of a disappointingtrial with only weak to moderate effects at best.This research program was explicitly designed toovercome a limitation that characterized many ofthe trials reported in the literature—small samplesize—by pooling samples across six treatment sites

offering six different treatments. Despite the unpre-cedented sample size (N¼ 1222), it was possibleto demonstrate a significant main effect acrosstreatment sites for only one variable—caregivers’appraisals of the stressfulness of problem behaviors(called ‘burden’ by the investigators). Additionally,the treatment at only one of the six sites was foundto lower depressive feelings (Eisdorfer et al., 2003).Secondary analyses, however, found that somesubgroups of caregivers responded positively tosome of the treatments offered.

On the surface, these disappointing findings pointto a relatively dismal future for family care anddementia intervention research and a potentialargument for questioning the need for suchprograms. One explanation for these findings isthat the care situation offers little leverage forchange. Caregivers may be too embedded in thecare relationship to make changes that might relievestress; the treatment may not offer the right kind ofmotivation for the caregiver to make changes; or thecaregivers’ reactions to stress may be too much a partof their personality to be modified in a substantialway. Another possibility is that the chronic andoften deteriorating course of the elder’s illness anddisabilities may just be too demanding or too painfulfor all but a small handful of caregivers to manage.

A review of the REACH trial and other studies,however, suggests a different explanation—thatmethodological problems may have contributed tothe limited evidence to date for effective treatments

Correspondence: Steven H. Zarit, Ph.D., Dept. of Human Development and Family Studies, 211 South Henderson Bldg.,University Park, PA 16802 USA. E-mail: z67@psu.edu

ISSN 1360-7863 print/ISSN 1364-6915 online/08/010005–13 � 2008 Taylor & FrancisDOI: 10.1080/13607860701616317

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for family caregivers of people with dementia.Specifically, the strategies used to design andevaluate caregiver interventions have sometimesbeen flawed, resulting in an inadequate test ofthe efficacy of treatments. Like any relatively newfield, caregiver intervention studies have followedestablished principles for conducting research.Researchers have generally followed the ‘goldstandard’ template for their research—the rando-mized controlled trial—but have not considered themodifications that might be needed to addressthe unique characteristics of the population or thequestions being posed. The basic randomizedapproach addresses how participants are assignedto treatment and control conditions but researchersmust also consider a multitude of decisions aboutrecruitment and eligibility, measurement, treatmentimplementation and other factors that affect theinternal and external validity of their design.Ultimately, the features that make a particulardesign optimal depend on the specific researchcontext and question at hand. Consequently,procedures that represent a gold standard in oneresearch context might compromise internal validityin another. Building on the available literature, aswell as our own work (e.g. Femia, Zarit, Stephens,& Greene 2007; Whitlatch et al., 1991; Zarit,Anthony, & Boutselis 1987; Zarit, Stephens,Townsend 1998), we identify problems that mayhave compromised prior caregiver interventionresearch and suggest possible solutions and strategiesthat can overcome these problems. Our focus ison dementia-related caregiving but these researchissues apply to other types of caregiving situationsas well.

Issue 1: Caregiving is not a disorder

Perhaps the most basic problem in previous treat-ment studies is viewing caregiving as if it werea psychiatric disorder like major depression. Weillustrate this point by contrasting how treatmentstudies of depressed people and of caregivers areusually carried out. A typical treatment design formajor depressive disorder (MDD) is shown inFigure 1 In this standard approach, people whomeet certain eligibility criteria, notably diagnosisof MDD, are then randomly assigned to one ormore treatment groups and one or more controlconditions. Treatments (e.g. drug therapies orcognitive behavioral approaches) are then intro-duced that address in a direct way the participants’lack of emotional well-being. Improvement isassessed in terms of reduction in depressivesymptoms.

Now consider the design shown in Figure 2 Thisis the design that has most often been used incaregiver treatment studies. People are enrolled intothe study because they are caregivers. The eligibilitycriteria typically address characteristics of the care

recipient, such as having functional or cognitivelimitations or a diagnosis of dementia, or involvedefinitions of the caregiver role, such as havingprimary responsibility for care, helping with activitiesof daily living or providing a certain number of hoursof care per week. These characteristics are self-identified by the caregiver. Those people who meetthe eligibility criteria are then randomly assigned totreatment and control conditions. The caregiversin the active treatment condition then receive anintervention that has as its goal to reduce depressivesymptoms or some other stress indicator (e.g.subjective burden).

The difference between these two approachesshould be apparent. In the first design, participantsare screened and selected based on their depressiveprofile and are treated for their depressivesymptoms, with a successful outcome being areduction in those symptoms. In the second design,participants are screened and selected based on theircaregiving involvement but are treated for depressivesymptoms that they may or may not have. The mainflaw in this approach is the assumption thatall caregivers will be depressed or experiencesubjective burden or some other negative outcome.Depressive symptoms, which have been the mostwidely used outcome in caregiver interventions, havea substantial prevalence in caregiver samples butare by no means universal. Most studies show that20–50% of caregivers have clinically significantsymptoms (Aneshensel et al., 1995; Anthony,Zarit, & Gatz 1988; Cuijpers, 2005; Friss &Whitlatch, 1991; Gallagher, Rose, Rivera, Lovett,& Thompson 1989; Neundorfer, McLendon,Smyth, Strauss, & McCallum 2006; Pruchno &Resch, 1989; Pruchno, Kleban, Michaels,& Dempsey 1990; Schulz, O’Brien, Bookwala, &Fleissner 1995; Whitlatch, Feinberg, & Sebesta1996). That means that between 50 and 80% ofcaregivers do not suffer from significant depressive

Caregivers RR

TT

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xMeasures

ofDepression

Figure 2. Randomized Trial for Treatment of Caregivers.

People who aredepressed

RR

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ofDepression

Figure 1. Randomized Trial for Treatment of Depression.

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symptoms and so could not benefit from a treatmentdesigned to reduce them. Even allowing for the factthat treatment studies will tend to attract caregiverswho have higher depression levels, on average, thana representative sample, some participants will stillhave low or no depressive symptoms.

There are two negative consequences of thisapproach. First, when the goal of a treatment isreducing depression, but some of the peopleincluded in the sample are not depressed, thatmeans a portion of the sample cannot showimprovement following treatment. The result is aloss of statistical power to detect change. Second,it is possible that treating people for a problem theydo not have may actually worsen their situation(Collins, Murphy, & Bierman 2004; Collins,Murphy, Nair, & Strecher 2005). They may perceivea mismatch between the treatment and their needsor become discouraged because the treatment doesnot address their major concerns. The potential forthis type of adverse outcome deserves seriousconsideration and may account for some of theattrition observed in longitudinal studies. A similarargument could be made for any of the otheroutcome measures that have been used in caregivingresearch.

The solutions to this dilemma are rather straight-forward. If the goal of treatment is to treat a specificproblem, such as depressive symptoms, then therecruitment criteria should include a minimumthreshold of depressive symptoms. Studies focusedon other outcomes, such as subjective burden, couldlikewise select caregivers who have that problem inthe first place. A second REACH trial took a step inthis direction by enrolling participants who had atleast moderate levels of strain in their role (Belleet al., 2006; see also Smith & Toseland, 2006). Thisapproach may have contributed to the more positiveoutcomes of this trial compared to the first REACHstudy.

We could also address the problem of hetero-geneity on outcome measures in a different way.Rather than assuming we know what outcomes toassess, we could, instead, conduct preliminary workthat asks caregivers why they are seeking treatmentin the first place. It may turn out that caregivers arenot seeking help to reduce depression or anxiety, butto address the issues surrounding the time and effortthey put into the caregiving role and any emotionalor physical strain that ensues. These caregivers maybe at risk for adverse outcomes, such as depressionand worsening health, but that may not be how theyview themselves or why they seek help. Rather, theyseek help because they perceive that the time andeffort they have to commit to caregiving is beginningto wear them down or disrupt other importantactivities in their lives. In other words, caregiversdefine their situation based on the everyday pro-blems that they face, while researchers define their

outcome based on an acceptable public healthindicator, such as depression.

A logical approach would be to provide treatmentfor the problems that caregivers do have, whether itis the strain in their role or the physical andemotional demands of caregiving. The success ofthe intervention could be judged by how well itaddressed the targeted processes. Improvement inthose areas would not only be meaningful, but couldalso have beneficial long-term effects, includingreduced risk of depression or worsening health.This approach would capitalize on what might be themotivation of caregivers who have joined treatmentstudies in large numbers, but who have not shownobvious symptoms of emotional distress.

Whichever approach researchers take—to treat aspecific problem or to prevent a set of adverseoutcomes—a sample would need to be recruited thatmade it possible to detect those treatment effects.The typical approach of recruiting people who maybe heterogeneous with respect to the outcomestargeted by the intervention usually leaves theresearcher without adequate statistical power todetect either treatment effects or to determine ifadverse outcomes have been prevented. A betterapproach would be to recruit an adequate number ofcaregivers who had the specific problem beingtreated in the intervention, such as depression, or asufficient number of caregivers at risk for a problemwho would participate in a prevention trial.

In community-based trials, it can sometimes beimpossible for practical and/or political reasons toscreen and recruit only those participants who haveelevated scores on dependent measures. A couple ofanalytic strategies are available when portions of thesample have low initial scores at baseline on thedependent measures. One strategy is to test foran interaction between baseline score and treatment(e.g. Wolchik et al., 2002). The interaction termcould show that people with higher symptoms atbaseline benefit differentially from treatment. Thispossibility of differential response to treatmenthas rarely been discussed in caregiving studies.Two caveats are important. First, the sample sizemust be adequate, that is, the proportion of peoplewith the problem targeted by the treatment (e.g.those who are depressed) needs to be considered incomputing statistical power. Second, the treatmentgiven to caregivers with low levels of depressionneeds to be relevant to their situation in orderto avoid the possibility of overtreating them forproblems they do not have and which might worsentheir situation.

Another approach for addressing the heterogene-ity of baseline scores on the dependent measures isto specify explicit criteria for successful and unsuc-cessful outcomes (e.g. Ducharme et al., 2005;Whitlatch et al., 1991). Following this strategy,Whitlatch and colleagues defined a successful out-come as a specified amount of decrease in distress for

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people who initially had elevated scores on measuresof anxiety, depressive symptoms and subjectiveburden. For people who had low baseline scores onthese measures, a successful outcome was definedas no increase in distress, adjusting for the possibilityof regression toward the mean. The results wereanalyzed using a method called prediction analysis(von Eye & Brandstadter, 1988), which considersthe discrepancy between predicted and observedoutcomes. The predicted outcome was that partici-pants assigned to active treatment would be morelikely to have successful outcomes, compared tothose in the control groups. Using this approach,it was found that caregivers in an active treatmentcondition (a combination of individual counselingand a family meeting) had better outcomes that thecontrol conditions. In other words, caregivers in theactive treatment with high initial distress were morelikely to decline than the control groups, whilepeople in the active treatment with low initial distresswere more likely to remain stable compared to thecontrol groups (Whitlatch et al., 1991).

Issue 2: Caregivers have heterogeneous profiles of

risk factors

Most previous treatment studies have taken the sameapproach to risk factors as they have with outcomes.They have assumed that all caregivers would benefitfrom interventions that target a particular risk factor,such as behavior problems, or from increases in aresource or protective factor, such as social support.There is, however, likely to be considerable varia-bility among caregivers in their profiles on riskfactors and so they may not benefit equally from atreatment that targets one specific domain.

An example would be a skill-building programthat trains caregivers to improve their managementof dementia-related behavior problems. Behaviorproblems are quite common in dementia and areperhaps the most difficult stressor faced by care-givers. Numerous studies have found that rates ofbehavior problems are associated with the caregiver’sdepressive symptoms (e.g. Aneshensel et al., 1995;Pruchno & Resch, 1989; Pruchno et al., 1990).But just as not all caregivers are depressed, not alldementia patients exhibit disruptive behaviors andnot all caregivers are bothered by these behaviors orhave difficulty managing them (Femia et al., 2007;Teri et al., 1992). Similar heterogeneity would befound among caregivers for other risk factors, suchas inadequate information about their relative’sillness, lack of social support or family conflict(e.g. Aneshensel et al., 1995; de Frias, Tuokko, &Rosenberg 2005). Just as it is not productive to treatcaregivers for depressive symptoms that they do nothave, it is also not a useful strategy to targetcaregivers for treatment of a particular risk factorunless they actually have that risk factor. Thesecaregivers are not likely to benefit from the treatment

being offered and may actually worsen as a resultof over-treatment in this area or under-treatment ofthe risk factors that they do have.

Issue 3: Tailoring treatment—one size does not fit all

By this point, the general issue should be fairlyobvious: Family caregivers are a heterogeneouspopulation with heterogeneous risk profiles.They vary from one another on sociodemographiccharacteristics that could affect their response totreatment (Gitlin et al., 2003) and, also, differ intheir exposure to care-related stressors, their sub-jective responses to those stressors, the resourcesthey have for managing or containing stressors andthe outcomes they experience. Hence, the ‘one sizefits all’ approach does not work for caregiverinterventions. It should not be surprising, then,that the outcomes reported by more flexible inter-ventions have been the most positive (e.g. Belleet al., 2006; Buckwalter et al., 1999; Marriott et al.,2000; Mittelman et al., 1995; 1996, 2004; Whitlatchet al., 1991).

Other areas of intervention research have recog-nized the need for approaches that take into accountthe varying profiles of risk and protective factorsfound in targeted populations. This type of approachis called variously an ‘adaptive’, a ‘tailored’ or an‘individualized’ intervention (Collins et al., 2004;Tinetti, McAvay, & Claus 1996). Participants areassessed for risk and protective factors that con-tribute to the targeted outcome (e.g. prevention ofdrug use, relief of depressive symptoms). Explicitcriteria or assignment rules are then used forassigning participants to treatment componentsbased on the risk factors that they have. REACH II(Belle et al., 2006) followed this strategy, explicitlytailoring the intervention based on caregivers’ scoreson risk factors in the initial assessment.

Adaptive treatment, in effect, captures the art ofgood clinical practice, where interventions aremodified in scope and intensity to fit the personand his/her needs. Despite the fact that each personreceives a somewhat different mix of treatmentcomponents and dosage, it is possible to test theefficacy of an adaptive trial with the same scientificrigor as any other intervention. For one thing,treatment decisions in an adaptive treatment arebased on explicit and replicable rules, for example,scores on an assessment battery. Control groupscould also be set up in ways that parallel the adaptiveintervention. People receiving an attention control,for example, might receive the same number ofsessions that they would have been assigned to in theadaptive condition, based on their initial assessment.It can, of course, be challenging to balance factorssuch as amount of contact with a therapist betweentreatment and control conditions in communitytrials. Nonetheless, adaptive treatment is a promis-ing strategy that could make it possible to test a

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comprehensive treatment for caregivers’ distress orburden.

Issue 4: Treatment mechanisms need to have a functional

link to outcomes

A critical assumption that underlies any interventionis that the mechanisms of treatment have an impacton the outcome. There is, for example, considerableresearch that demonstrates the link between selectedneurotransmitters and depressive symptoms and somedications that affect these neurotransmittersare a rational choice for treatment. In contrast,psychosocial treatments for caregivers have some-times used strategies that do not have obvious orknown relationships with the outcome measures.Consider, for example, the work that has been doneon support groups. Despite the enduring popularityof support groups, relatively few studies have foundthat they reduce caregiver distress or burden(e.g. Haley, Brown, & Levine 1987; Hebert et al.,2003). One possible explanation, of course, is thatsupport groups do not have positive effects. Analternative interpretation is that the treatmentprovided may be helpful in some ways, but not forthe outcomes that have been measured (e.g. Hebert,Leclerc, Bravo, Girouard, & Lefranois 1994;Perren, Schmid, & Wettstein 2006). The therapeuticprocesses that can be implemented in supportgroups includes sharing information and providinga special kind of support that comes from peoplewho are experiencing the same problem. Givinginformation, however, is not likely to be an effectivetreatment for depression. Social support and othersocial factors can be involved in the etiology ofdepression, but the potential benefits of supportinterventions may depend on what other problemsthe caregiver has and whether there is a need forincreased support.

These examples suggest the importance of havinga clear theoretical model of how the treatment issupposed to work. Do the resources or processesintroduced in treatment have a reasonable likelihoodof affecting the outcomes? Empirical evidencesupporting this assumption would, of course, behelpful. A careful examination of the mechanisms bywhich treatment is theorized to work will clarifywhich treatment approaches are best for a particularoutcome or which outcome measures are to be usedwith a particular treatment. Going back to theexample of support groups, the type of informationand support that is provided may not be useful asa treatment for depression but may address othertypes of problems, such as helping caregivers feel lesstrapped in their role or helping them become moreactive decision-makers for the choices facing them.In other words, outcome measures should beappropriate for the treatment being used and viceversa.

Issue 5: The treatment needs to be delivered as planned

Another consideration is whether caregivers in thetreatment group actually receive the planned treat-ment. A treatment might show weak effects, notbecause it is a poor treatment, but because it has notbeen implemented adequately. Did a support group,for example, actually provide participants withinformation and support? Another possibility toaccount for weak treatment effects is that caregiversin the control group received comparable treatment,thus compromising the integrity of the treatment-control group comparison. It is not unreasonable forcaregivers in the control condition to seek out theirown resources, such as information and support(e.g. Lawton, Brody, & Saperstein 1989). In thatcase, the treatment may not appear effective incomparison to the control condition because bothgroups received similar resources. That findingcould actually support the treatment model (infor-mation and support are helpful) but suggests that themechanism for increasing information and supportthrough support groups is not effective.

Issue 6: A randomized trial is not always the

optimal design

As the previous comments about control groupsimply, there are potential threats to the internalvalidity of randomized trials that need to be takeninto account. Participants in wait list or minimaltreatment control groups sometimes seek out treat-ment on their own that is comparable to what isoffered in the experimental program. The problem isthat, in contrast to a drug trial where participantsreceive a credible placebo treatment and where thefocus is usually on relatively short-term outcomes,the control conditions in caregiver interventions canhave limited credibility, yet may need to be main-tained for a few months or more. It is also possibleto err in the other direction. The more crediblethe control condition becomes, the more likely itintroduces treatment processes comparable to theexperimental condition. While this design strategyreduces the possibility of the control group seekingadditional outside treatment, it can also reducethe power to detect significant group differences.Two suggestions can be made here. First, the extentof cross-over by participants or convergence oftreatments need to be directly assessed by theresearchers, so that any dilution of treatment orenhancement of non-treatment can be accountedfor. Second, the strength of the experimentaltreatment (i.e. its effect size) should be sufficientlylarge to distinguish itself from the non-specific and/or specific benefits that could have been gained fromthe control treatment.

When randomized trials can be conducted, theyrepresent a powerful design strategy, but it is alsoimportant to recognize that, in certain situations,random assignment is not possible or raises more

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threats to the internal validity of the experiment thando alternative designs. For example, researchersinterested in studying the impact of existing com-munity services may not randomly assign peopleinto programs such as adult day care or in-homerespite. Caregivers usually self-select themselvesinto community programs based on a number ofvariables (e.g. their own or their relatives’ character-istics and/or the characteristics of the program) suchthat if assignment into a particular program weremade for them, it is likely that they would not adhereto the conditions of the treatment or controlprotocol. This was the case in a study by Lawtonand colleagues (1989). Caregivers were recruited inthe study because of their role status, not becausethey were seeking services, and then were randomlyassigned to a treatment group that received helpfinding services and a control group that receivedinformation about local services. The result was thatrates of service use were relatively low in thetreatment group, while some control participantsalso used services.

We may not, for example, be able to assign peopleinto existing community programs such as day careor respite, but can turn to other research designs.One alternative approach is a quasi-experimentaldesign where it is possible to identify comparablegroups of people who differ only in their exposure orlack of exposure to a particular program (Shadish,Cook, & Campbell, 2002). We used this approach ina study of caregivers’ response to adult day care,comparing people who used day care in one region ofthe country, to caregivers in another region whodid not have access to day care for dementia (Zaritet al., 1998). As long as it can reasonably beconcluded that the groups are equivalent on dimen-sions that might affect the outcomes of the study,this type of design can provide an effective test of anintervention. Another alternative is an intensiverepeated measures design. This approach focuseson within-individual changes that occur in responseto exposure to, and withdrawal of, treatment(Barlow, Andrasik & Hersen, 2006). An examplewould be to evaluate people’s mood when theyparticipate in therapeutic activity compared to ausual activity or other control condition (e.g. Jarrott& Bruno, 2003). The immediate and delayed effectof exposure to the therapeutic condition would be avaluable indicator of its efficacy. Because thesewithin-subject designs compare people to them-selves, they have the advantage of controlling forindividual differences that could affect outcomes,such as personality or typical response style tosubjective questions.

Issue 7: Treatments need sufficient dosage to be effective

We also want to consider how much treatment isnecessary to produce a change in the desiredoutcomes. While dosage has long been a central

issue in drug trials, the amount of exposure tobehavioral and social interventions has rarelyreceived systematic consideration. In the caregivingliterature we can find examples of studies thatexpected to produce far-reaching changes whileproviding fairly minimal exposure to treatment.A medication would not have its intended effect ata sub-therapeutic dosage and the same is true forcaregiver interventions. Treatment will not beeffective if not delivered at a high enough frequencyor intensity to make a difference in the targetedstress processes. Mittelman and associates (1995;1996; 2004) have reported impressive short- andlong-term effects of their interventions. It is prob-ably not a coincidence that their intervention isintensive and provides both initial and long-termassistance. The intervention involved an intensiveacute phase of individual and family interventions,which was followed by a maintenance program thatincluded participation in support groups and theopportunity for caregivers to consult with theiroriginal counselor about changes in their situation.Caring for someone with a chronic disease is along-term commitment and so it is likely that themost effective services will also be available on asustained basis.

Dosage has been a major problem in studies ofrespite services, such as in-home care and adult dayprograms. Many of these studies have reporteddisappointing findings, but dosage has typicallybeen small and some participants supposedly receiv-ing services actually received no services at all(Lawton et al., 1989; Zank & Schacke, 2002).Taking a different approach, our research group(Zarit et al., 1998) first explored what would bea sufficient dosage of adult day care to make adifference in providing relief from the pressures ofdaily care for family caregivers of people withdementia. Consultations with services providerssuggested that caregivers who used these programsat least twice a week for three months or longerwould experience relief. Using that criterion asa minimum dosage, we found substantial benefitsto caregivers who used day care, including lowerfeelings of overload and strain in the caregiving roleand lower depression and anger, compared toa control group not using day care. A recent trialof an enhanced day care program also had positiveresults, including reducing the high rates of attritionfound in many typical programs (Gitlin, Reever,Dennis, Mathieu, & Hauck 2006).

Issue 8: Whose goals are being treated?

Finally, we return to an issue touched on earlier thatis central to the challenges faced by researchersdesigning intervention trials for caregivers—whosegoals are being targeted, the caregiver’s or theresearcher’s? Researchers have assumed that care-givers want to receive treatment for the risks and

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outcomes targeted by the intervention. These inter-ventions, however, have generally not includedopportunities to discuss goals with caregivers, todevelop a shared agenda or to vary the treatment ifcaregivers have different goals. An overridingassumption of much of the treatment literature isthat caregivers will want to alleviate the burden theyare experiencing but that may not always be the case.Some caregivers may feel strongly that their involve-ment and commitment to helping their relative isappropriate and desirable and so they are willing totake on physical or emotional burdens. In the end,they may be less concerned with the potential tollcaregiving has on them than with their relative’swell-being. This may especially be true for husbandsand wives of the person with dementia, whomay willingly make whatever sacrifice is needed.More discussion with caregivers of what they want orwhy the proposed treatment might help them reachtheir goals is clearly warranted.

To illustrate this point, one reason that studies onprevention of institutional placement have demon-strated little effect (e.g. Fox, Newcomer, Yordi, &Arnsberger 2000; Miller, Newcomer, & Fox 1999) isthat caregivers may not have not shared this goal.Delay of placement has been a primary concern ofpolicy researchers, who want to lower costs bydiverting caregivers from high cost services, such asinstitutional care, to lower cost home-based services.It has been assumed that the caregivers who arerecruited into these studies will also want to delayplacement but, in actuality, they have not beenengaged in a discussion of their own preferences andgoals. They may not even be aware that one goal ofthe intervention is delay of placement. Manycaregivers, of course, do share that goal but, aswith every other aspect of the caregiving process,there is heterogeneity. Some caregivers may actuallyuse services for the opposite purpose, that is, as away of exploring the possibility of placement or tohelp them make the decision to do so (Montgomery& Kozlowski, 1994; Zarit, Stephens, Townsend,Greene, & Leitsch 1999). A mismatch between thecaregiver’s and the researcher’s goals is likely to leadto a poor outcome.

Conclusions

With the projected growth in numbers of olderpeople in the coming decades, the role of familycaregivers is likely to continue to increase inimportance. Despite the recognition that caregivingis often stressful, there is as yet only a limitedempirical evidence on strategies that help caregiversmanage this role more effectively. One of the majorbarriers to development of an empirically-basedliterature is the heterogeneity of the caregivingpopulation. Their variability in risks, resources,experiences of distress and goals for treatment

presents a challenge that has not sufficiently beenrecognized. Interventions also need to be guided bya functional framework that includes an under-standing of the therapeutic processes at work and atreatment delivered at a sufficient enough dosage toaffect the targeted outcomes. The approaches thathave been suggested may be helpful in leading tomore rigorous tests of treatments for caregiversand for other heterogeneous groups of older peopleexposed to stressful situations and may be useful aswell in planning prevention trials.

Acknowledgements

The work in this paper was supported in part bya grant from the National Institute of Mental Health,1 R34 MH073559-01, Adaptive Treatment forAt-Risk Caregivers. Earlier versions of this paperwere presented at the Gerontological Society ofAmerica, November 2005 and the British Society ofGerontology, September 2006.

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