David W. Coon

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

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.

The Resources for Enhancing Alzheimer's Caregiver Health (REACH): project design and baseline characteristics.

The Resources for Enhancing Alzheimers Cargiver Health (REACH) project was designed to test promising interventions for enhancing family caregiving for persons with dementia. The purpose of this article is to describe the research design, interventions, and outcome measures used in REACH and to characterize the sample recruited for the study. Nine interventions and 2 control conditions were implemented at 6 sites; 1,222 dyads were randomly assigned to an intervention or a control condition. The caregiver sample was 18.6% male with an average age of 62.3 years (56% Caucasian, 24% Black, and 19% Hispanic). Caregivers reported high levels of depressive symptoms and moderate burden. Care recipients were older, with a mean age of 79, and were moderately to severely impaired with mean Mini-Mental State Exam scores of 13/30.

Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: Findings from the REACH study

Although there has been considerable interest in racial differences in family caregiving for persons with dementia, most research to date has either ignored racial diversity or based conclusions on small numbers of caregivers drawn primarily from single site studies. The current study utilized participants from four sites of the REACH (Resources for Enhancing Alzheimers Caregiver Health) multi-site study to compare well-being, appraisal, and religious coping by race. African-American (n = 295) and Caucasian (n = 425) dementia caregivers from four cities (Birmingham, Memphis, Boston, and Philadelphia) were compared in their demographics, care recipient characteristics, mental and physical health, and psychosocial coping resources including appraisal and religious coping. African-American caregivers reported lower anxiety, better well-being, less use of psychotropic medications, more benign appraisals of stress and perceived benefits of caregiving, and greater religious coping and participation, than Caucasian caregivers. Self-rated health did not differ by race, but African-American caregivers reported more unhealthy behaviors than Caucasian caregivers. Some results were specific to site, possibly due to differences in recruitment strategies, inclusion/exclusion criteria, and regional differences. Adjustment for covariates, including caregiver relationship to the care recipient, gender, age, socioeconomic status, and care recipient behavioral problems, altered few of these differences. Results are discussed in terms of their relevance to psychosocial intervention programs for ethnically diverse 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.

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.

The Cost-Effectiveness of a Behavior Intervention with Caregivers of Patients with Alzheimer's Disease

OBJECTIVES: To examine the cost‐effectiveness of a randomized, clinical trial of a home‐based intervention for caregivers of people with dementia.

Psychometric Analysis of the Revised Memory and Behavior Problems Checklist: Factor Structure of Occurrence and Reaction Ratings

A modified version of the Revised Memory and Behavior Problems Checklist (RMBPC; L. Teri et al., 1992) was administered across 6 different sites to 1,229 family caregivers of community-dwelling adults with dementia. The total sample was divided randomly into 2 subsamples. Principal components analyses on occurrence responses and reaction ratings from the first subsample resulted in a 3-factor solution that closely resembled the originally proposed dimensions (memory-related problems, disruptive behaviors, and depression). Confirmatory factor analyses on data from the second subsample indicated adequate fit for the 3-factor model. Correlations with other caregiver and care-recipient measures supported the convergent and discriminant validity of the RMBPC measures. In addition, female caregivers and White caregivers reported more problems, on average, than male caregivers and African American caregivers, respectively.

The Relationship Between Homework Compliance and Treatment Outcomes Among Older Adult Outpatients With Mild-to-Moderate Depression

OBJECTIVE The authors extend previous research on homework in psychotherapy by examining the relationship between homework compliance and therapeutic outcome among depressed older adult outpatients (N = 63), addressing previous limitations by using session-by-session therapist ratings of homework compliance and including both interviewer ratings and patient self-reports of outcomes. METHODS Patients were participants in a randomized clinical trial evaluating the efficacy of desipramine versus cognitive/behavioral therapy-alone (C/B-Alone) versus a combination of the two (Combined). Given the current studys focus on homework compliance, only patients assigned to conditions with assigned homework in the clinical trial (i.e., C/B-Alone and Combined conditions) were included. RESULTS Results of hierarchical regression analyses indicated that homework compliance contributed significantly to posttreatment outcome as measured by both interviewer-administered and patient self-report measures of depression. A separate series of ANOVAs also found significant differences in pre-posttreatment change between patients scoring above and below the median of reported homework compliance. Findings were similar for patients in the C/B-Alone and Combined conditions. CONCLUSION The studys results call for additional research on issues related to homework compliance with older adult patients.