'Supported by a grant from the AARP Andrus Foundation. Appreciation is expressed to Kinta Pardo and Lynn Eastman for their assistance with the project.
Copyright /W> by The (•wuntu/ogtr.if Society of America
Reported here are longitudinal follow-up data from caregivers who participated in an experimental study of group intervention for dementia caregivers. Methodological and clinical issues evident from this long-term follow-up include differential attrition from treatment, issues in selection of participants, and need for measures appropriate to long-term outcome. Key Words: Methodological issues, Alzheimer's disease, Institutionalization
Group Intervention for Dementia Family Caregivers: A Longitudinal Perspective1 William E. Haley, PhD:
'Supported by a grant from the AARP Andrus Foundation. Appreciation is expressed to Kinta Pardo and Lynn Eastman for their assistance with the project. Portions of this article were presented at the annual meetings of the Gerontological Society of America, Washington, DC, November 1987. ^Assistant Professor, Department of Psychology; Associate Scholar, Center for Aging; and Staff Psychologist, Birmingham Veterans Administration Medical Center; University of Alabama at Birmingham, Birmingham, AL 35294.
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not show any greater change on any of the objective outcome measures, including caregiver depression, life satisfaction, coping, and social activity and network than did caregivers on the waiting list. On the subjective postgroup evaluation forms, however, caregivers described themselves as highly satisfied with the groups, and most described a number of specific perceived benefits from the groups. Long-Term Results
Caregivers who participated in the initial treatment study completed a long-term follow-up assessment, averaging 29 months after their initial pretreatment assessment. Of the 48 caregivers who completed all follow-up measures, 18 still had their patients at home, 15 had placed their relative in a nursing home, and 15 patients were deceased. Caregivers repeated many of the initial measures, and answered some additional specialized questions concerning their adjustment to their patients' death, nursing home placement, or continued home care. Several types of results from the long-term follow-up are relevant to research on long-term treatment outcome. First, the long-term patient outcomes of caregivers who attended six or more group sessions were compared to patient outcomes for caregivers who had failed to participate or dropped out of the groups. As shown in Table 1, patients of 70% of the dropouts died during the follow-up, compared with 21% of patients of caregivers who completed the groups. Given initial results (Haley et al., 1987) which showed that dropouts had patients with more severe initial impairment on the Mini-Mental State (Folstein et al., 1975), caregivers with patients in later stages of dementia probably found the group meetings less relevant to their concerns, or had greater difficulties in arranging to attend sessions because of their patients' severe impairment. Several patients had actually died during the initial study period, leading directly to dropout from treatment. As also shown in Table 1, 50% of caregivers who had completed the group sessions, and whose patients were still living, had placed their relative in a The Gerontologist
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Although support groups are widely used as an intervention for family caregivers of patients with dementia, there have been few controlled studies of the efficacy of such intervention. The authors of the present series of papers have all conducted controlled studies of intervention for caregivers, and have experienced first-hand the practical problems encountered in conducting this type of research. Added in the present paper is the perspective of a longitudinal follow-up to a previously published experimental study of the effectiveness of group intervention for dementia family caregivers (Haley et al., 1987). Other researchers and clinicians will, I hope, benefit from a discussion of the benefits and limitations of group treatment when long-term outcome is considered, and the description of methodological strengths and problems encountered in this project may serve as a guide to future researchers. To briefly summarize the project (Haley et al., 1987), 54 family caregivers of patients with dementia were randomly assigned to either one of two types of group intervention or a waiting list control condition. All caregivers completed a comprehensive assessment before randomization, including information on patient impairment and caregiver depression, life satisfaction, health, social network and social activity, appraisal, and coping responses. Assessments were repeated after seven sessions of group intervention (or seven weeks on the waiting list), and after three additional follow-up sessions (or eight additional weeks on the waiting list). Group participants also completed a subjective postgroup evaluation. Contrary to expectation, results indicated that there were no significant changes after treatment on any of the objective caregiver outcome measures. After treatment, group participants did
analyses of the sample as a whole, as is described in detail in another paper (Haley et al., 1988). For ethical reasons, all caregivers initially assigned to the waiting list condition had been offered treatment, so no long-term outcome data are available from an untreated control group. Thus, the extent to which stability in caregiver functioning over time in the sample was due to possible preventive benefits of group intervention is unclear.
Table 1 . Long-Term Outcome of Dementia Patients by Family Caregiver Participation in Groups
Long-term patient outcome Patient residing at home Patient residing in nursing home Patient deceased
Caregiver completed group (N = 38)
Caregiver dropped out (N = 10)
N (%)
N (%)
15 (39.5) 15 (39.5) 8 (21)
3 (30) 0 (0) 7 (70)
Directions for Future Investigation
Vol. 29, No. 4,1989
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The study had several methodological strengths that should be utilized in future studies, including random assignment of caregivers to treatment versus wait list conditions and use of varied objective measures of outcome. Assessments of caregivers were also completed by research assistants who were not involved in administering intervention, and who were blind to whether caregivers were in treatment or control groups, as a way to decrease demand effects. In hindsight, there were several methodological limitations to the research that should be addressed in future studies. The small number of participants, especially after dropouts were excluded from data analyses, reduced the statistical power of detecting significant effects. Longitudinal follow-up results suggested that the inclusion in the sample of many caregivers with severely impaired patients in late stages of dementia may have contributed to high levels of dropout from treatment, and it is likely that less experienced caregivers would have been more in need of intervention. As a group, caregivers in this project reported fairly low initial levels of distress, which made it difficult to demonstrate significant decline on these scores after treatment. In future intervention studies caregivers should be screened, and those who do not show elevations on dependent measures used to assess clinical change should be excluded. The addition of measures of caregivers' gains in knowledge and skills or individualized goalattainment measures, as reflected in the Toseland, Rossiter, and Labreque article in this symposium, might have detected benefits not systematically assessed in this project. Finally, given that coping with caregiving is a long-term process, and some of the benefits of intervention may be preventive (e.g., decreasing deterioration in the caregiver), long-term follow-up of treated and untreated groups will be essential to document such potential long-term benefits. Of course, all of these recommendations would make outcome studies even more difficult to carry out. Researchers and policymakers concerned about caregiving stress should also consider other kinds of interventions to support family caregivers. Caregivers need greater access to services, such as sitters, attendant care, respite care, and nursing home placement. In recruiting caregivers for this project, many (especially those from lower income levels) were unable to participate because of unavailability of sitters and transportation. The economic problems that result from caregiving, such as loss of
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nursing home. Although no control group is available to compare rates of institutionalization among untreated groups, it is unlikely that the group intervention decreased rates of nursing home placement. Clinical interviews on long-term follow-up suggested that group participation may have actually facilitated some caregivers' successful pursuit of nursing home placement. Because of their participation in the groups, these caregivers were unusually well informed about how to proceed with nursing home placement, and had had unusually good success in gaining Medicaid funding or admission to a local county nursing home. Clinical observations also suggested that some of these caregivers were also rather well prepared psychologically to make the decision to finally institutionalize their relatives after years of caregiving, and reported less guilt or conflict about the decision than expected. All caregivers who had institutionalized their relatives were asked what effect the placement had had on their own perceived level of stress. In all, 11 of these 15 caregivers said that stress had decreased, 3 said that stress was about the same (but of a different sort), and only 1 said that she/he felt more stress after placement, again suggesting that this sample had unusually good experiences with nursing home placement. The 38 caregivers available for the long-term follow-up who had completed the groups provided a rating of their overall long-term satisfaction with the groups on the same scale used in the original study, which ranged from 1 (not at all satisfied) to 5 (extremely satisfied). Again, the average ratings of satisfaction with the groups were very high, averaging 4.62 on the 5-point scale. Caregivers were asked to describe aspects of the groups that had been of particular use to them over the long term. Most caregivers described the groups as having been very important in helping them to cope successfully over the long term. They almost uniformly cited the benefits of knowing that they were not alone in experiencing the stress of caregiving, having had the opportunity to talk about their experiences with others who understood them, and about awareness of community resources. Others stated that they had been better prepared for the problems of later stages of dementia, and emphasized the information they had gained about practical management strategies. On most measures of caregiver depression, life satisfaction, social activity, social network, and health, marked stability was found on longitudinal
income when relatives must cease paid employment to provide care, also will require intervention that is beyond the scope of support groups. It is important that support groups not be seen as an inexpensive panacea for the problems of families who take on the burdens of caregiving. Participation in support groups may be beneficial without reducing the demand for other expensive services, such as nursing home placement. In one recent randomized study, admission of dementia patients to a special dementia nursing home unit led to significant decline in caregivers' affective symptoms, when compared to caregivers given community respite services (Wells & Jorm, 1987). Although unattractive from an economic perspective, it may be a favorable clinical outcome for some caregivers to eventually acknowledge that it is time to resort to nursing home placement, with
psychological support aimed at reducing guilt or remorse. In future research on the evaluation of interventions for caregivers, thorough analysis of benefits and limitations of treatment will be essential in guiding policy toward caregiving families. References Folstein, M. F., Folstein, S., & McHugh, P. R. (1975). "Mini-Mental State": A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198. Haley, W. E., Brown, S. L , & Levine, E. C. (1987). Experimental evaluation of the effectiveness of group intervention for dementia caregivers. The Gerontologist, 27, 376-382. Haley, W. E., Pardo, K. M., & Eastman, L. (1988, November). Longitudinal followup of dementia patients and their family caregivers. Paper presented at the meeting of the Cerontoiogical Society of America, San Francisco. CA. Wells, Y., & Jorm, A. F. (1987). Evaluation of a special nursing home unit for dementia sufferers: A randomized controlled comparison with community care. Australian and New Zealand journal of Psychiatry, 21, 524-531.
The Biological Sciences Section of The Cerontoiogical Society of America is seeking nominations and applications for the Nathan Shock New investigator Award. The recipient of the award will be presented $1,500 at the annual scientific meeting of The Cerontoiogical Society of America in Minneapolis, MN, November 17-21,1989. Eligible candidates must have a Ph.D., M.D., D.D.S. or equivalent degree and must not be past the seventh post-doctoral year. The following information must be submitted by the candidate to the Biological Sciences Section Awards Committee: • • • •
Curriculum vitae indicating the year the doctoral degree was awarded A summary of the candidate's research not to exceed 1,000 words Two letters of recommendation Three reprints of relevant research papers authored by the candidate
Deadline September 1,1989 Biological Sciences Section Awards committee The Cerontoiogical Society of America 1275 K Street, NW, Suite 350 Washington, DC 20005-4006 (202)842-1275
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The Gerontologist
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NATHAN SHOCK NEW INVESTIGATOR AWARD FOR OUTSTANDING BIOLOGICAL RESEARCH IN GERONTOLOGY
