Treatment options for improving wellbeing in dementia family caregivers: The case for psychoeducational interventions

Treatment Options for ImprovingWellbeing in Dementia Family Caregivers:The Case for PsychoeducationalInterventionsColin DeppOlder Adult and Family Center, Stanford University School of Medicine, USA

Erica Krisztal, Veronica Cardenas, Miguel Oportot, Brent MausbachOlder Adult and Family Center, Stanford University School of Medicineand Pacific Graduate School of Psychology, USA

Christian AmblerOlder Adult and Family Center, Stanford University School of Medicine, USA

Laurie LeungOlder Adult and Family Center, Stanford University School of Medicineand Pacific Graduate School of Psychology, USA

Dolores Gallagher-ThompsonOlder Adult and Family Center, Stanford University School of Medicine, USA

This paper provides an empirical and conceptual rationale for the relativeadvantages of psychoeducational programs versus support groups for care-

givers of people with dementia. The need for interventions that improve the wellbeing of caregivers is well documented. We reviewed studies that have directlycompared support-based and psychoeducational interventions. Two majorstrengths of psychoeducational interventions are their emphasis on training care-givers in a variety of cognitive and behavioral skills for coping with caregiving,and their adaptability to caregivers from diverse backgrounds. We present anoverview of how caregiver training can be tailored to suit individual needs.Specific examples for working with ethnically diverse caregivers are also offered.Finally, recommendations for the translation of psychoeducational research toclinical practice are provided.

After over two decades of research on family caregiving for individuals withdementia, the data are unequivocal that most caregivers suffer negative conse-quences as a result of their role. Family caregivers of persons with dementiaare at risk for increased depressive symptomatology (Bookwala, Yee, &Schulz, 2000; Rose-Rego, Strauss, & Smyth, 1998), reduced wellbeing(Rose-Rego et al., 1998), poorer self-rated health (Schulz & Beach, 1999;Schulz, Visintainer, & Williamson, 1990), and higher mortality rates (whencompared with non-caregivers) (Schulz & Beach, 1999). The task of caring 21

Address for correspondence: Dolores Gallagher-Thompson, Ph.D., ABPP, Older Adultand Family Center, Dept. of Psychiatry & Behavioral Services, Stanford Univ. School ofMedicine, VA Palo Alto Health Care System, Mail Code: 182C/MP, 795 Willow Road,Menlo Park, CA 94025, USA. Email: [email protected]

Clinical Psychologist I Volume 7 I1 Number 1 12003 I1 pp. 21-31

C. Depp, E. Krisztal, V. Cardenas, M. Oportot, B. Mausbach, C. Ambler, L. Leung, and D. Gallagher-Thompson

for an older relative with dementia typically involves contending with behav-ioral disturbances, providing for physical needs, and investing a great deal oftime and money. All of these factors persist for years, making caregiving achronically stressful experience for many. As the geometric increase of thealready 4 million people with Alzheimer's disease occurs over the nextdecades, the detrimental effects of caregiving will grow as a public healthproblem (Czaja, Eisdorfer, & Schulz, 2000).

While the problems associated with caregiving are readily apparent, it isfar less clear how best to meet caregiver's needs. A number of interventionsdesigned to support the caregiver exist. Reviews have investigated the effec-tiveness of such diverse programs as support groups, psychoeducational inter-ventions, individual therapy, respite care, and interventions that combineseveral programs (see Beck, 1998; Knight, Lutzky, & Macofsky-Urban, 1993;Sorenson, Pinquart, & Duberstein, 2002). These interventions can be cate-gorised by whether their focus is on reducing subjective and objective burdenexperienced by the caregiver such as through providing time away from thecare recipient (e.g., respite care) or whether they target increasing the care-giver's wellbeing by focusing on their reactions to the caregiving experience(e.g., psychoeducation and support groups). For the purposes of this review,we will focus on two common interventions intended to enhance caregiverwellbeing, namely, psychoeducational and support-based interventions.

Accumulated data from reviews as well as our own experience suggeststhat psychoeducational interventions maintain several clear advantages oversupport-based groups. The following review has three aims:

* To describe the current state of empirical evidence for the effectivenessfor psychoeducational and support-based interventions.

* To describe what we feel are the strengths of psychoeducationalapproaches to assisting caregivers.

* To provide a clinical perspective on how empirical findings aboutpsychoeducation can be translated to practice with caregivers.

* What are Psychoeducational andSupport Groups for Caregivers?

Before reviewing studies of the effectiveness of psychoeducational and supportinterventions, it is necessary to define these different approaches. A psychoeduca-tional intervention is typically time-limited and employs a structured agenda thatoutlines goals for the class. Content derives from cognitive-behavioral therapy(CBT) and involves acquisition of specific skills (e.g., challenging negativethoughts and increasing the frequency of participation in pleasant events)

22 through various mechanisms such as role-plays, demonstrations, or written mate-rials. Psychoeducational approaches typically make use of homework assign-ments in order to translate skills learned in class to the caregiver's daily routine(Coon, Rider, Gallagher-Thompson, & Thompson, 1999). Psychoeducationalinterventions for caregivers include an overview of dementia as well as instructionin stress management and dealing with the care receiver's behavior problems(See Table 1 for an overview of common topics for caregivers).

Clinical Psychologist

Psychoeducational Interventions

Table 1Recommended Content for Psychoeducational Group Interventions

Psychoeducational Primary theory Skills taughtgroup

Coping with Lazarus and Folkman · How to relax in a stressful situationCaregiving' (1984) * Howto appraise the care-receivers behavior more realistically

· How to communicate more assertively* Learning to see the contingency between mood and activities· Developing strategies to do more everyday pleasant activities* Learning to set self-change goals and reward oneself for

accomplishments along the way.

Increasing Life Lewinsohn (1974) * How to monitor daily mood and rate of engagement in pleasantSatisfactionb activities or events

· How to identify potentially powerful pleasant events by graspingthe relationship between events and mood

* How to develop a self change plan targeting at least one specificpleasant event to increase

* Identify potential obstacles to doing this* Set reasonably weekly goals· Learning to reward oneself to maintain the new activity schedule

Increasing Problem- D'Zurilla (1986) * How to achieve a calm state of mind before attempting to solveSolving Skillsb the problem

* Howto define the problem as specifically as possible· How to brainstorm or generate a number of possible solutions to

the problem* How to evaluate the positive and negative aspects of each option· How to choose one solution and begin to implement it* How to evaluate what is happening and modify it if necessary,

or incorporate it into one's life

Note: Gallagher-Thompson et al. (In Press). b Gallagher-Thompson et al. (2000).

Support groups are most often unstructured, led either by a professionalor peer, and focus on enhancing emotional support among members. It hasbeen found that support groups engender both personally meaningfulconnections among participants and informal information exchange aboutsuch topics as community resources or coping strategies (Beck, 1998). Theformat of support groups varies greatly in frequency of contacts, number ofparticipants, and affiliation (e.g., Alzheimer's Association, religious organisa-tions). Usually, coping skills are not explicitly taught and no opportunity forrole playing or skill acquisition and practice are incorporated in the sessions.Rather the emphasis is on emotional sharing and peer support.

* What is the Empirical Evidence? 23What do the data say when psychoeducational and support-based interven-tions are directly compared? Sorensen, Pinquart, and Duberstein (2002)aggregated results from 38 psychoeducation based studies and 7 studiesemploying a support group format. Results comparing group formats indi-cated significant main effects in favor of psychoeducational interventions onall outcome variables, including caregiver burden, depression, wellbeing, and



knowledge. Education-based interventions reduced caregiver burden andincreased caregivers' knowledge about the disease and had lower dropoutrates as well. Similar effects are seen when comparisons are made betweencomponents of interventions. Pusey and Richards (2001) reviewed 30controlled studies and found that interventions that included problem solvingand behavior management components were more effective than those relyingon emotional support alone.

Bourgeois, Schulz, Burgio, and Beach (2002) compared a patient-focused(N = 22) and caregiver-focused (N = 20) psychoeducational group, to asupportive intervention (N = 20). Both psychoeducational interventionsdemonstrated greater behavior change than the support group at the end oftreatment and at follow-up assessment. Smaller but significant effects wereseen for psychoeducational groups on wellbeing variables, includingperceived stress and depression.

In a recent study performed at our site (Gallagher-Thompson et al., inpress), over 200 Caucasian and Latina female caregivers were randomlyassigned to either a coping with caregiving psychoeducational program or anenhanced support group. The coping with caregiving group used a stress andcoping model, with emphases on developing relaxation skills and enhancingpositive affect. The supportive intervention was professionally led, and aimedat developing reciprocal support among members. Compared to the supportintervention, the coping with caregiving group demonstrated significantlygreater reduction in depressive symptoms, increased use of adaptive copingstrategies and decreased use of negative coping strategies (e.g., avoidance).

The increased efficacy of education over support-based intervention hasbeen shown for other patient populations. A study of breast cancer patientsfound that an educational intervention improved participants' self-esteem,coping skills, and physical functioning (Helgeson, Cohen, Shultz, & Yasko,1999). No improvement on any of the variables was seen in a comparisonsupportive intervention group (conducted by the same therapists as the educa-tional intervention group), and there were some indications that the supportgroups had negative effects. The authors surmised that, compared to those inthe psychoeducational group, participants in the support condition made moredownward comparisons to others who were worse off (i.e., at more severestages of breast cancer), which could certainly occur in a caregiver group withcare receivers at differing stages of progressive dementia. Clearly, the patientgroup in Helgeson et al., (1999) is quite different from dementia caregivers.However, both breast cancer patients and caregivers undergo chronicallystressful experiences and often report clinically significant distress; in bothpopulations psychoeducation appeared to be effective in managing this distress.

Empirical evidence for the effectiveness of psychoeducation has been seenwith other important variables. For example, studies have found that psychoed-

24 ucational interventions may also affect cost of caregiving. Mittelman andcolleagues (Mittelman et al., 1995) found that a family intervention delayedinstitutionalisation of the care recipient by an average of 329 days. In Australia,Brodaty and Peters (1991) conducted a 3-year study on the effectiveness of a10-day in-home program designed for dementia caregivers. They found thattheir program helped keep care-recipients at home for longer periods of timeand that the equivalent of $6000 was saved over the 3 years of study. To our



knowledge, there are no indications from the literature that support-basedinterventions have similar effects on cost of care or institutionalisation.

As can be seen from our brief review, empirical support for psychoeduca-tional treatment interventions is accumulating. Psychoeducational interven-tions were identified as the only intervention format that met criteria for"probably efficacious" when assessed by the American PsychologicalAssociation's Division 12 criteria for empirically validated treatments (Gatz etal., 1998). Since the time of that review, additional studies have beenconducted in various laboratories in the country supporting the efficacy ofsuch programs and recommending their use in clinical practice. Relativelyfewer studies have subjected support-based interventions to intensivecontrolled study, so we know less about the effect of support groups on, forexample, institutionalisation. However, the studies cited indicate thatsupport-based interventions are less efficacious in promoting behavior changeand, to a lesser degree, reducing caregiver depression.

· What are the Strengths of Psychoeducational Interventions?In addressing caregiver needs, the literature and our experience indicate thatcaregiving is a complex and highly personal task. For instance, often care-givers must contend with their loved one's behavioral problems, increasingdemands on their time, stress and concomitant depression, and planning forfuture and end of life issues. These tasks must be performed simultaneously,all in the context of the grief and loss that accompanies having a spouse orrelative diagnosed with dementia. This means that training programs mustaddress a broad array of targets in order to be comprehensive (see Table 1 forthe empirical bases of common psychoeducational interventions).

Caregiving therefore involves a diverse range of evolving tasks, performed byan increasingly diverse group of people (Yeo & Gallagher-Thompson, 1996).Needs of caregivers differ across ethnicities, stages of dementia in the carereceiver, gender, and relationship of the caregiver to the care-receiver (Aranda& Knight, 1997; Dilworth-Anderson, Williams, & Gibson, 2002; Janevic &Connell, 2001). Not surprisingly, "one size fits all" interventions often do notwork (Knight et al., 1993). There are at least two ways in which psychoeduca-tional programs can allow for individualised interventions. First, group leaderscan tailor general cognitive-behavioral techniques to treat specific caregiverproblems. Second, interventionists can adapt materials and treatment strategiesto target specific groups (e.g., persons of different ethnicities, male caregivers).

* Cognitive-Behavioral AdaptationsAt our own site, we have designed and evaluated a variety of manualised groupinterventions. A recent example is "Coping with caregiving: Reducing stress and 25improving quality of life" (Gallagher-Thompson, et al., 2002; earlier versions ofthis manual are available at www.oafc-menlo.com). This intervention follows a13-week schedule, with the possibility of extension of up to 16 weeks if moretime with caregiver(s) is needed. Specific modules from the treatment manual aredisplayed in Table 2. Although the research protocols require participants toattend the full length of the course, this can be modified in clinical practice so



that caregivers may attend individual sessions or modules (as determined by theclinician) to resolve identified problem areas.

In each group module, caregivers are asked to apply key concepts discussedin a practical manner by citing specific examples from their lives and role-playing several new skills throughout the course of the class. For example, afterlearning ways to improve their communication/assertiveness skills, caregiversare asked to role-play a specific scenario from their past where they have haddifficulty in asking a family member or friend for help. By teaching caregiversskills that can be adapted to individual issues, each member of the group hasthe opportunity to contribute, and take from the course a set of skills, insights,and goals that apply to them and that they helped to develop.

As the name implies, a central aspect of psychoeducational interventionsinvolves participants being exposed to a variety of educational materialsrelated to providing care to a relative experiencing memory impairments.Examples of some of the materials the participants receive throughout thecourse involve handouts and other written materials on psychological andphysical effects of stress related to caregiving, end of life care and associatedlegal issues, background and application of relaxation techniques, and prac-tice in how to apply behavioral interventions to reduce the frequency ofcommon behavioral problems in the home.

* Cultural and Population-Specific AdaptationsThe provision of culturally-sensitive psychoeducational interventions todiverse caregivers has been a growing research focus (e.g., Gallagher-

Table 2

Intervention Topics Covered in our Current Psychoeducational Treatment Program for Dementia FamilyCaregivers

1. Stress and Wellbeing - General discussion of physiological and psychological effects of stresson person's wellbeing

2. The Behavioral Chain- Identification of behavioral cause and effect relationships3. Changing Difficult Behaviors- Discussion of strategies and skills used in modifying a particular behavior

(behavior logs, behavior goals, relaxation techniques, guided imagery, meditation)4. Refining Behavior Plans- Revision and modification of personal goals and strategies regarding one's

own behavior5. Behavior Strategies and Unhelpful Thoughts- Identification of specific negative thought process

and acknowledgment of their relationship to one's behavior6. Changing Unhelpful Thoughts- Discussion of skills designed to recognise and modify negative thoughts

(i.e., thought records, thought blocking, cognitive restructuring)7. Communication Styles- Discussion of effective and appropriate communication techniques

(assertive vs. passive and aggressive communication styles)8. Communication and Memory Problems- Discussion on how to relate effectively and appropriately

with someone experiencing memory impairments26 9. Planning for the Future- Discussion regarding setting appropriate goals and development of various action

plans (i.e., end of life care, pain management, legal issues related to protection of property and living wills)10. Pleasant Events and Your Mood- Discussion of how life events can effect one's mood, the importance of engaging

in pleasant events during difficult times, and the identification of personalised pleasant events11. Refining Pleasant Events and Overcoming Barriers- Discussion of strategies and skills used in implementing

pleasant events into one's routine (Daily Mood Ratings, Activity Planning Worksheets)12. Maintaining Gains - Thinking ahead about how to apply skills learned to anticipated (future) stressful situations

related to caregiving.



Thompson et al., 2000). A number of excellent reviews describe the influenceof culture and ethnicity on the caregiving experience (Aranda & Knight, 1997;Dilworth-Anderson, Williams, & Gibson, 2002; Janevic & Connell, 2001).Ethnically diverse caregivers may differ in such basic factors as their relation-ship to the care-receiver. For example Latino caregivers are more frequentlyadult children rather than spouses (Aranda & Knight, 1997), whereas forAnglos, the reverse is often true. Caregivers from diverse backgrounds mayalso differ in terms of reported levels of depression and perceived stress. Forinstance, Mexican-American caregivers have been found to be more at risk fordepression than Caucasian caregivers who, in turn, have been typically foundto be more distressed than their African-American counterparts (Ayalon &Huyck, 2001; Janevic & Connell, 2001). Cultural background may also influ-ence coping style - for example African-American caregivers more often usereligious coping whereas Anglo caregivers more often use problem-solvingtechniques (Janevic & Connell, 2001). In addition, cultural differences mayappear in the way caregivers both view dementia and appraise the caregivingprocess. For example, Japanese-Americans tend to adopt a more passive andpessimistic stance toward caregiving than other groups to which they arecompared (Adams, Kemp, & Takagi, 2002). Finally, Latino and African-American caregivers often utilise fewer services than Caucasians, while relyingmore heavily on informal care (Janevic & Connell, 2001). Barriers to serviceutilisation by ethnic groups can include language, lack of nearby services, aswell as mistrust of institutions and the effects of racism.

Therefore, researchers and clinicians face a great challenge in creatingculturally sensitive and efficacious programs. At our site, we have adapted thegroup treatment described above to be more relevant to Latino, African-American, and Chinese-American caregivers. A recently published pilot studyof an 8-week psychoeducational intervention with Latino caregivers can serveas an example of how the basic psychoeducational approach can be tailored toa particular ethnic group (Gallagher-Thompson et al., 2000). In order to iden-tify the needs of Latino caregivers, we employed telephone surveys as well asfocus groups of current caregivers. These specific meetings/conversations weredesigned to identify appropriate topics based on caregivers' needs and exploreda variety of options related to subject matter/themes, verbiage used in course,materials, ideal number of participants, and how they preferred to be taught(e.g., either individually or in a group format). Moreover, bicultural/bilingualinterviewers and interventions were utilised throughout the project.

We also established connections and recruited participants from existingcommunity support networks (e.g., community centres), in order to build trustwith community members. Building community partnerships may be useful forassisting members of traditionally disadvantaged groups. A focus-group studyby Lampley-Dallas, Mold, and Flori (2001) found that African-American care-givers were frustrated with health care provision in part due to perceptions of 27racism. Therefore, working from 'within' the community may be essential.

In developing the manuals for Latino and Chinese caregivers, the themesof the individual sessions, as referenced in Table 2, were included in thecourse, but considerable effort was made to present material that was cultur-ally relevant to the group which was the focus for intervention. Some specificchanges that were made included deletion of CBT-specific jargon, for



example the use of "unhelpful/helpful thoughts" in the English material werebelieved to be too harsh sounding in Spanish and therefore replaced with theterms "positive/negative thoughts." Also, the scripts and titles used for certainrelaxation exercises in the English language manual were altered to makethem better understood by Latino and Chinese families.

Moreover, we added colorful contemporary visuals and illustrations withinthe course materials that appeared to be more culturally attractive and morelikely to increase the chances that caregivers would identify with what was beingtaught. For example, some of the photos of Caucasian people in the Englishlanguage manual were replaced with pictures of people that matched thespecific targeted ethnic group. More important, materials were translated intovarious languages, which required teams consisting of people knowledgeable ofthe variety of regional dialects within each language. These teams were requiredto remain culturally sensitive by conducting "back translations" of certainmaterials while at the same time avoiding literal translations that would fail tocapture specific concepts, as well as come to a consensus on culture-specificgrammar. Feedback was also obtained from a variety of cultural consultantsregarding the generalisability of the course materials to subgroups experiencingdifferent modes of immigration and acculturation parameters within the specificculture. These methods are consistent with Valle's (1998) recommendations forpromoting acceptance of intervention programs in ethnic communities.

In addition to cultural diversity, another frontier for the adaptation ofthese programs is the provision of treatment to male caregivers. Althoughmales currently comprise 25% of caregivers and their proportion seems to begrowing, few interventions have been individually tailored to meet their needs(McFarland & Sanders, 2000). Males may utilise different coping strategiesand may need more instrumental assistance and education (e.g., how toprepare meals). At the same time, males report less distress than female care-givers and may therefore need less emphasis on skills to alleviate depression(Lauderdale, D'Andrea, & Coon, 2002). A program designed for male care-givers has been piloted at our site (Lauderdale et al., 2002). Preliminary feed-back from the caregivers indicates that when appropriately modified, thisapproach was helpful to the men who participated. The men cited practicaland concrete assistance as most helpful in reducing their stress.

* Clinical ImplicationsThere are several clinical implications of this paper relevant to mental healthprofessionals working with caregivers. First, we do not wish to denigrate thevalue of interventions to enhance support. Mutual emotional support is anessential component of any group psychotherapeutic intervention, and the

28 fostering of shared experiences in caregiving in a supportive setting is clearlypowerful and helpful for many caregivers. We feel that such support is animportant ingredient of the psychoeducational program described here, sinceit is typically carried out in a small group format. However, we believe thatbetter results are achieved when interventionists make education an activeprocess, by which caregivers learn to apply their new coping skills in thecontext of the group, as well as share their struggles with other members.



Second, we have listed several important ingredients of psychoeducationalprograms for caregivers that appear related to success. Effective interventionsreviewed in the literature generally include topics relevant to reduction ofstress and depression in the caregiver. These may be accomplished in anumber of ways, such as increasing pleasant events and healthy behaviors(Aranda & Knight, 1997; Gallagher-Thompson et al., in press). Interventionsgenerally attempt to enhance the caregivers' ability to cope with and managebehavioral problems in the care receiver. Other important content areasinclude education about dementia as an illness and providing informationabout community resources available. Finally, planning for the future is oftenan important facet of education with caregivers, particularly with respect toend-of-life care and dealing with institutionalisation.

Third, using the above topics as a framework, interventionists should beactive in discovering the caregivers' own particular needs for education. Theuse of focus groups for designing interventions is a very helpful way of gainingthe perspective of caregivers in their own context (see Ducharme, Lavesque,Gendron, & Legualt, 2001; Gallagher-Thompson et al., 2000; Teitleman,Watts, Meisel, Woodward, & McFarland-Smith, 2001). Using pilot groups andreceiving feedback from caregivers about the format and content of proposedinterventions also helps to guide the development of an intervention. Attemptsto provide psychoeducational treatment programs to caregivers from diverseethnic groups requires understanding in the ways in which the caregiving expe-rience is unique for a member of a given culture or ethnicity. Again, trainingculturally competent interventionists and providing culturally congruent mate-rials are important in meeting the needs of diverse caregivers. Forming partner-ships with existing community support networks can assist in reducing many ofthe biases disadvantaged groups have against health care providers.

* SummaryBroadly speaking, a considerable amount of empirical evidence states thatpsychoeducational interventions are more effective in reducing wellbeing andpromoting behavior change than support-based groups in caregivers of peoplewith dementia. It seems likely that psychoeducational treatments are able toachieve this increased efficacy due to their greater flexibility to target positivechange in a diverse set of people with diverse problems. These structuredinterventions appear to reduce distress (e.g., depression), and to a lesserextent reduce caregiver burden, increase adaptive coping, and possibly reducecost of care and institutionalisation rates. Therefore, we would recommendthat those who work with caregivers make greater use of psychoeducationalmaterials and manuals that have empirical support (for a review see Sorensenet al., 2002). Currently available evidence suggests that support groups arerelatively less able to meet the needs of many caregivers, and the empirical 29basis for support groups is weaker. For example, support-based interventionscould theoretically be adapted to different cultures or caregiver subgroups,but to our knowledge the empirical literature about specific adaptations ofsupport groups for caregivers is miminal at best.

However, clinicians working with caregivers should be mindful thatpsychoeducational programs are far from perfect. While psychoeducation has



a long history, the study of its application to dementia caregivers is relativelynew. As such, effects on outcome variables reported in reviews may be rela-tively small, and may be of less than ideal clinical significance, due to factorssuch as the types of outcome measures used, variability in content areascovered, and skill levels of the interventionists (Schulz et al., 2002). Futureresearch should attempt to delineate what the active ingredients are forpsychoeducation with caregivers, as well as how those ingredients can be besttargeted toward sub-populations of caregivers. Even given these limitations,sufficient evidence exists that demonstrates there should be broader provisionof psychoeducational groups, particularly in regions where no interventionsor only support groups are available. Finally, research should also investigatehow to best "translate" existing psychoeducational protocols so that they areflexible, incorporate diversity, and can be easily used in clinical practice.

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Treatment options for improving wellbeing in dementia family caregivers: The case for psychoeducational interventions

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