Dolores Gallagher-Thompson

Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups: A Randomized, Controlled Trial

Context Providing care for patients with dementia can pose enormous burdens that may be eased with assistance and support. Needs may differ by race or ethnicity. Contributions The investigators randomly assigned Hispanic, black, and white dementia caregivers to receive written educational materials or an intensive intervention to improve caregiver quality of life. The specific interventions were determined by caregivers, were delivered via trained personnel and telephone support groups, and targeted several dimensions of need. The study found that quality of life improved for Hispanic and white caregivers and for black spousal caregivers in the intervention group but not in the control group. The intervention had no detectable effect on the number of care recipients who were institutionalized. Cautions The study used only a single 6-month follow-up assessment, combined heterogeneous cultures and ethnicities into 3 groups, and excluded some ethnicities. Implications An intensive intervention targeting several dimensions of caregiver need improved caregiver quality of life without an apparent effect on care recipient institutionalization. The effect did not differ by caregiver race or ethnicity. The Editors Caring for a family member with dementia is extremely stressful, contributes to psychiatric and physical illness, and increases the risk for death (1, 2). The accumulating evidence on the personal, social, and health effects of dementia caregiving has generated a broad range of intervention studies, including randomized trials aimed at decreasing the burden and stress of caregiving. Several studies have demonstrated statistically significant effects in reducing caregiver burden, lowering caregiver depression, and delaying institutionalization of care recipients (1, 3, 4) through either targeted interventions that treat a specific caregiver problem, such as depression, or broad-based multicomponent interventions that include counseling, case management, and telephone support. Persistent limitations of caregiver intervention research are the paucity of well-controlled randomized trials, the limited range of outcomes examined, small sample sizes and insufficient power, geographic limitations, inadequate racial or ethnic variation, and a scarcity of comprehensive multicomponent interventions (4). Indeed, none of the 41 randomized clinical trials published in the last 5 years met Consolidated Standards of Reporting Trials (CONSORT) recommendations for reporting randomized trials (5), and many have serious methodologic problems that call into question the reported findings (4). To address these limitations, the National Institute on Aging and the National Institute of Nursing Research funded a multisite research program designed to develop and test an effective caregiver intervention: the Resources for Enhancing Alzheimers Caregiver Health (REACH) study. We performed the study in 2 phases. In the first phase (REACH I), we tested several different interventions at 6 U.S. sites to identify the most promising approaches to decreasing caregiver burden and depression (6). Results from the study showed that active treatments were superior to control conditions in reducing caregiver burden and that active engagement in skills training statistically significantly reduced caregiver depression (7, 8). The existing literature and findings from REACH I helped guide the design of the REACH II intervention (7, 8). We based the REACH II study on the premise that caregivers can have problems in several areas at varying levels of intensity, and thus, interventions must be responsive to variations in needs among caregivers. The findings from REACH I also suggest that interventions that use active techniques, such as role-playing and interactive practice, are more effective at improving outcomes, such as depression symptoms, compared with more passive methods, such as providing information (7). We based the REACH II intervention on these assumptions and designed the intervention to maximize outcomes by systematically targeting several problem areas, tailored the intervention to respond to the needs of each individual, and actively engaged the caregiver in the intervention process. We hypothesized that participants assigned to the intervention would do better than those in the control group on several indicators of caregiver quality of life, including depression, burden, self-care, and social support and care recipient problem behaviors, and that these differences would be largest among Hispanic or Latino persons because they have lower access to support services (8). In additional analyses, we assessed the effects of treatment on rates of caregiver clinical depression and care recipient institutional placement, as well as the benefits derived from study participation. Methods Caregivers Eligibility criteria for caregivers included the following: Hispanic or Latino, white or Caucasian, or black or African-American race or ethnicity; age 21 years or older; living with or sharing cooking facilities with the care recipient; providing care for a relative with diagnosed Alzheimer disease or related disorders for at least 4 hours per day for at least the past 6 months; and reported distress associated with caregiving (reported at least 2 of the following 6 items at baseline assessment: felt overwhelmed, felt like they often needed to cry, were angry or frustrated, felt they were cut off from family or friends, reported moderate to high levels of general stress, or felt their health had declined). We excluded caregivers who were involved in another caregiver intervention study, who had participated in REACH I, or who had an illness that would prevent 6 months of study participation. Other requirements were logistic, including having a telephone, planning to remain in the geographic area for at least 6 months, and competency in either English or Spanish (see Appendix Table 1 for a detailed list of exclusions). Appendix Table 1. Reasons for Ineligibility Care Recipients To be eligible for the study, caregivers had to confirm that their relative had diagnosed Alzheimer disease or related disorders. In addition, we screened care recipients for a history of severe mental illness, head injury, Parkinson disease, or stroke, and we administered the MiniMental State Examination (MMSE) (9). We excluded patients who were bedbound with MMSE scores of 0 because we felt that our intervention had little to offer caregivers who were caring for such patients. Moreover, being bedbound is a risk factor for institutional placement or death, and we sought to exclude caregivers who were likely to transition out of the caregiving role within the 6-month study. For patients who scored more than 23 on the MMSE or had other conditions, such as head injury, we required a physicians diagnosis of Alzheimer disease or related disorders. Procedures We recruited caregiver and care recipient dyads at 5 sites: Birmingham, Alabama; Memphis, Tennessee; Miami, Florida; Palo Alto, California; and Philadelphia, Pennsylvania. Enrollment began in June 2002, and follow-up ended in August 2004. Recruitment occurred in memory disorder clinics, primary care clinics, social service agencies, physician offices, churches, and community centers and by using professionally designed brochures, public service announcements on radio stations, newspaper articles, television, targeted newsletters, and community presentations. We translated all intervention materials and assessment instruments into Spanish for the Hispanic or Latino participants by using established techniques for forward-and-back translation and allowing for regional variation in language expression. We used bilingual and bicultural staff at the 3 sites that recruited Hispanic or Latino participants: Palo Alto, Philadelphia, and Miami. At all sites, assessors and interventionists received cultural sensitivity training and were certified before entering the field. Certified assessors were blinded to group assignment of study participants. The institutional review boards of all 5 site institutions and the coordinating center in Pittsburgh, Pennsylvania, approved the study. We obtained written informed consent from all caregivers and from care recipients whenever possible. Caregivers provided consent on behalf of care recipients who could not do so on their own. After telephone screening (n= 995) and baseline assessment (n= 670), we randomly assigned participants (n= 642) to the intervention or control group (Figure). We stratified randomization by using a block size of 2 or 4 within strata defined by the 5 intervention sites, 3 racial or ethnic groups (Hispanic or Latino, white or Caucasian, and black or African American), and 2 caregivercare recipient relationships (spouse or nonspouse). We performed randomization at the coordinating center by using a computer-generated algorithm and a standard protocol for transmitting randomization information between the coordinating center and the study sites. We administered 1 of 3 follow-up batteries, on the basis of care recipient status at follow-up (full follow-up, bereavement battery, or placement battery), to study participants 6 months after randomization when the intervention was completed. To maximize the number of individuals who could be included in the outcome analyses, we ensured that the 3 batteries were as similar as possible. We did not ask caregivers about caregiver burden and care recipient functional status if their care recipients had died; thus, we could not include these caregivers in the primary outcome analysis (10). Figure. Study flow diagram. *See Appendix Table 1 for reasons for ineligibility. See Appendix Table 2 (for reasons for unavailable end points and types of 6-month follow-up. Appendix Table 2. Reasons for Unavailable End Points and Types of 6-Month Follow-up Trial Groups Intervention The intervention involved a range of strategies: provision of informat

Effect of Multicomponent Interventions on Caregiver Burden and Depression: The REACH Multisite Initiative at 6-Month Follow-Up

Meta-analysis was used to examine pooled parameter estimates of 9 active compared with 6 control conditions of the Resources for Enhancing Alzheimers Caregiver Health (REACH) project at 6 months on caregiver burden and depressive symptoms. Associations of caregiver characteristics and outcomes were examined. For burden, active interventions were superior to control conditions (p = .022). Also, active interventions were superior to control conditions for women versus men and for caregivers with lower education versus those with higher education. For depressive symptoms, a statistically significant association of group assignment was found for Miamis family therapy and computer technology intervention (p = .034). Also, active interventions were superior to control conditions for Hispanics, nonspouses, and caregivers with lower education. Results suggest interventions should be multicomponent and tailored.

Evidence-based psychological treatments for distress in family caregivers of older adults

This review identifies evidence-based psychological treatments (EBTs) for reducing distress, and improving well-being, of family members caring for an older relative with significant cognitive and/or physical impairment. Three categories of psychologically derived treatments met EBT criteria: psychoeducational programs (N = 14 studies), psychotherapy (N = 3 studies), and multicomponent interventions (N = 2 studies). Specifically, support within the psychoeducational category was found for skill-training programs focused on behavior management, depression management, and anger management and for the progressively lowered threshold model. Within the psychotherapy category, cognitive-behavioral therapy enjoys strong empirical support. Within the multicomponent category, programs using a combination of at least 2 distinct theoretical approaches (e.g., individual counseling and support group attendance) were also found to be effective. Suggestions for future research include the development of more well-integrated multicomponent approaches, greater inclusion of ethnically diverse family caregivers in research protocols, and greater incorporation of new technologies for treatment delivery.

Positive Aspects of Caregiving Contributions of the REACH Project to the Development of New Measures for Alzheimer’s Caregiving

The aim of this study was to assess a newly developed measure for the positive aspects of caregiving using a sample of dementia caregivers. The measure was developed and administered to 1,229 participants in a national collaborative Alzheimer’s disease caregiver study and evaluated for validity and reliability using standard psychometric analyses. Factor analysis identified two components in this nine-item measure: Self-Affirmation and Outlook on Life. Cronbach’s alphas for the components were .86 and .80, respectively. For the entire scale, Cronbach’s alpha was .89. The Positive Aspects of Caregiving measure, tested with a large, diverse, and well-characterized sample shows promise as a valid and reliable instrument. With additional implementation and testing, the measure has the potential to substantially increase our understanding of basic caregiving research and the outcomes of intervention efforts.

Comparative effects of cognitive-behavioral and brief psychodynamic psychotherapies for depressed family caregivers

Clinically depressed family caregivers (N = 66) of frail, elderly relatives were randomly assigned to 20 sessions of either cognitive-behavioral (CB) or brief psychodynamic (PD) individual psychotherapy. At posttreatment, 71% of the caregivers were no longer clinically depressed according to research diagnostic criteria (RDC), with no differences found between the 2 outpatient treatments. The results suggested therapy specificity; there was an interaction between treatment modality and length of caregiving on symptom-oriented measures. Clients who had been caregivers for a shorter period showed improvement in the PD condition, whereas those who had been caregivers for at least 44 months improved with CB therapy. These findings suggest that patient-specific variables should be considered when choosing treatment for clinically depressed family caregivers.

Comparison of Desipramine and Cognitive/Behavioral Therapy in the Treatment of Elderly Outpatients With Mild-to-Moderate Depression

The authors evaluated the efficacy of desipramine-alone, vs. cognitive/behavioral therapy-alone (CBT) vs. a combination of the two, for the treatment of depression in older adult outpatients. Patients (N=102) meeting criteria for major depressive disorder were randomly assigned to one of these three treatments for 16 to 20 therapy sessions. All treatments resulted in substantial improvement. In general, the CBT-Alone and Combined groups had similar levels of improvement. In most analyses, the Combined group showed greater improvement than the Desipramine-Alone group, whereas the CBT-Alone group showed only marginally better improvement. The combined therapies were most effective in patients who were more severely depressed, particularly when desipramine was at or above recommended stable dosage levels. The results indicate that psychotherapy can be an effective treatment for older adult outpatients with moderate levels of depression.

Ethnicity and the dementias

Risk of Dementia 1. Prevalence of Dementia among Different Ethnic Populations Assessment of Dementia in Diverse Populations 2. Overview of Psychiatric Assessment with Dementia Patients 3. Neurocognitive Assessment of Dementia in African American Elders 4. Assessment of Cognitive Status in Asians 5. Neuropsychological Assessment of Hispanics Elders: Challenges and Psychometric Approaches 6. American Indians, Cognitive Assessment, and Dementia Treatment and Management of Dementia 7. Overview of Treatment Alternatives for Dementing Illnesses Working with Families 8. The Family as the Unit of Assessment and Treatment in Work with Ethnically Diverse Older Adults with Dementia 9. Working with African American Families 10. Working with American Indian Families Working with Asian American Families 11. Asian Indian American 12. Chinese American 13. Filipino Americans 14. Hmong Americans 15. Japanese Americans 16. Korean Americans 17. Vietnamese American Working with Latino/Hispanic American Families 18. Puerto Rican and other Hispanic/Latino American Families 19. Cuban American 20. Mexican American 21. Working with Gay, Lesbian, Bisexual, and Transgender Families Community Partnerships for Support of Ethnic Elders and Families 22. Reaching Diverse Caregiving Families through Community Partnerships

Well-being, appraisal, and coping in Latina and Caucasian female dementia caregivers: findings from the REACH study

While there has been considerable interest in studying ethnically diverse family caregivers, few studies have investigated the influence of dementia caregiving on Latino families. The current study includes participants from two sites of the REACH (Resources for Enhancing Alzheimers Caregiver Health) project to compare well-being, appraisal, and religiosity by ethnicity, with specific attention to levels of acculturation. Latina (n = 191) and Caucasian female (n = 229) dementia family caregivers from two regions of the United States (Miami, Florida and Northern California) were compared at baseline on demographics, care recipient characteristics, mental and physical health, and psychosocial resources, including appraisal style and religiosity. Latina caregivers reported lower appraisals of stress, greater perceived benefits of caregiving, and greater use of religious coping than Caucasian caregivers. The relationship of these variables to level of acculturation for the Latina caregivers was also explored. Implications of these results for psychosocial interventions with Latino and Caucasian family caregivers are discussed.

Ethnicity and time to institutionalization of dementia patients: A comparison of latina and caucasian female family caregivers

Objectives: To compare rates of institutionalization of dementia patients cared for by Latina and Caucasian female caregivers and to explore which caregiver and care‐recipient characteristics predicted institutionalization.

Psychologists in Practice With Older Adults: Current Patterns, Sources of Training, and Need for Continuing Education

Rapid population growth among older adults means an increased need for psychologists prepared to provide mental health services to this population. A representative survey of 1,227 practitioner members of the American Psychological Association yielded information about current patterns of practice with older adults, sources of training in geropsychology, perceived need for continuing education (CE) in geropsychology, and preferred CE formats. Most respondents provided some services to older adults, but typically very little. The services provided are inadequate to meet projected demand. Most respondents lacked formal training in geropsychology and perceived themselves as needing additional training. CE workshops at the regional level and distance education were the most popular formats. These data serve as a call to the field to expand training opportunities at all levels of training, with an emphasis on the need for empirically based, broadly accessible CE offerings.