Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults
- 621 Downloads
This study examined the quality of life correlates of family caregiving and caregiving strain in a large national epidemiological sample.
Structured telephone interviews were conducted with 43,099 participants as part of the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants completed the 12-item short form health survey (SF-12) and brief measures of depressive symptoms, social contacts, and caregiving strain.
Family caregiving responsibilities were reported by 12% of participants. Caregivers reported more quality of life problems than noncaregivers, but these effects were largely dependent on the perceived level of caregiving strain. High strain caregivers reported more problems with emotional distress, worse physical functioning, and fewer social contacts than noncaregivers. Conversely, caregivers who reported no strain from caregiving reported better quality of life than noncaregivers. Caregiving strain effects were not due to demographic differences or to more objective indicators of caregiving demand.
Psychological and social indices of quality of life indicate prevalent problems among family caregivers who have experienced high strain from their caregiving responsibilities. Public health programs for disabled individuals should include assessments of strain on family caregivers and support services for those who report high levels of caregiving strain.
KeywordsCaregiving Caregiving strain Family caregivers Psychological health Depressive symptoms Health-related quality of life
This research project is supported by a cooperative agreement U01 NS041588 from the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health, Department of Health and Human Services. Additional funding was provided by an investigator-initiated grant R01 NS045789 from NINDS. The content is solely the responsibility of the authors and does not necessarily represent the official views of NINDS or the National Institutes of Health. Representatives of the funding agency have been involved in the review of the manuscript but not directly involved in the collection, management, analysis or interpretation of the data. The authors acknowledge the participating investigators and institutions of REGARDS for their valuable contributions: The University of Alabama at Birmingham, Birmingham, Alabama (Study PI, Statistical and Data Coordinating Center, Survey Research Unit): George Howard DrPH, Leslie McClure PhD, Virginia Howard PhD, Libby Wagner MA, Virginia Wadley PhD, Rodney Go PhD, Monika Safford MD, Ella Temple PhD, Margaret Stewart MSPH, J. David Rhodes BSN; University of Vermont (Central Laboratory): Mary Cushman MD; Wake Forest University (ECG Reading Center): Ron Prineas MD, PhD; Alabama Neurological Institute (Stroke Validation Center, Medical Monitoring): Camilo Gomez MD, Susana Bowling MD; University of Arkansas for Medical Sciences (Survey Methodology): LeaVonne Pulley PhD; University of Cincinnati (Clinical Neuroepidemiology): Brett Kissela MD, Dawn Kleindorfer MD; Examination Management Services, Incorporated (In-Person Visits): Andra Graham; Medical University of South Carolina (Migration Analysis Center): Daniel Lackland DrPH; Indiana University School of Medicine (Neuropsychology Center): Frederick Unverzagt PhD; National Institute of Neurological Disorders and Stroke, National Institutes of Health (funding agency): Claudia Moy PhD.
- 4.Brummett, B. H., Babyak, M. A., Siegler, I. C., Vitaliano, P. P., Ballard, E. L., Gwyther, L. P., et al. (2006). Associations among perceptions of social support, negative affect, and quality of sleep in caregivers and noncaregivers. Health Psychology, 25, 220–225. doi:10.1037/0278-618.104.22.168.PubMedCrossRefGoogle Scholar
- 5.Haley, W. E., West, C. A., Wadley, V. G., Ford, G. R., White, F. A., Barrett, J. J., et al. (1995). Psychological, social, and health impact of caregiving: A comparison of black and white dementia family caregivers and noncaregivers. Psychology and Aging, 10, 540–552. doi:10.1037/0882-7922.214.171.1240.PubMedCrossRefGoogle Scholar
- 6.Mausbach, B. T., Patterson, T. L., & Grant, I. (2008). Is depression in Alzheimer’s caregivers really due to activity restriction? A preliminary mediational test of the activity restriction model. Journal of Behavior Therapy and Experimental Psychiatry, 39, 459–466. doi:10.1016/j.jbtep.2007.12.001.PubMedCrossRefGoogle Scholar
- 9.McCann, J. J., Hebert, L. E., Bienias, J. L., Morris, M. C., & Evans, D. A. (2004). Predictors of beginning and ending caregiving during a 3-year period in a biracial community population of older adults. American Journal of Public Health, 94, 1800–1806. doi:10.2105/AJPH.94.10.1800.PubMedCrossRefGoogle Scholar
- 11.Miller, B., & Lawton, M. (1997). Symposium: Positive aspects of caregiving. The Gerontologist, 37, 216–217.Google Scholar
- 12.Brown, S. L., Smith, D. M., Schulz, R., Kabeto, M. U., Ubel, P. A., Poulin, M., Yee, J., Kim, C., & Langa, K. M. (2009). Caregiving behavior is associated with decreased mortality risk. Psychological Science (in press).Google Scholar
- 19.Roth, D. L., Burgio, L. D., Gitlin, L. N., Gallagher-Thompson, D., Coon, D. W., Belle, S. H., et al. (2003). Psychometric analysis of the revised memory and behavior problems checklist: Factor structure of occurrence and reaction ratings. Psychology and Aging, 18, 906–915. doi:10.1037/0882-79126.96.36.1996.PubMedCrossRefGoogle Scholar
- 20.Haley, W. E., Gitlin, L. N., Wiszniewski, S., Mahoney, D. F., Coon, D. W., Winter, L., et al. (2004). Well-being, appraisal, and coping in African–American and Caucasian dementia caregivers: Findings from the REACH study. Aging & Mental Health, 8, 316–329. doi:10.1080/13607860410001728998.CrossRefGoogle Scholar
- 21.Roff, L. L., Burgio, L. D., Gitlin, L., Nichols, L., Chaplin, W., & Hardin, J. M. (2004). Positive aspects of Alzheimer’s caregiving: The role of race. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 59, 185–190.Google Scholar
- 25.Howard, G., Safford, M. M., Meschia, J. F., Moy, C., Howard, V. J., Pulley, L., et al. (2007). Stroke symptoms in individuals reporting no stroke or transient ischemic attack are associated with a decrease in indices of mental and physical functioning. Stroke, 38, 2446–2452. doi:10.1161/STROKEAHA.106.478032.PubMedCrossRefGoogle Scholar
- 29.Haley, W. E., LaMonde, L. A., Han, B., Burton, A. M., & Schonwetter, R. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine, 6, 215–224. doi:10.1089/109662103764978461.PubMedCrossRefGoogle Scholar
- 30.Gitlin, L. N., Roth, D. L., Burgio, L. D., Loewenstein, D. A., Winter, L., Nichols, L., et al. (2005). Caregiver appraisals of functional dependence in individuals with dementia and associated caregiver upset: Psychometric properties of a new scale and response patterns by caregiver and care recipient characteristics. Journal of Aging and Health, 17, 148–171. doi:10.1177/0898264304274184.PubMedCrossRefGoogle Scholar
- 33.National Alliance for Caregiving, the American Association of Retired Persons. (2004). Caregiving in the US. Washington, DC: NAC and AARP.Google Scholar
- 34.Connell, C. M., Shaw, B. A., Holmes, S. B., & Foster, N. L. (2001). Caregivers’ attitudes toward their family members’ participation in Alzheimer disease research: Implications for recruitment and retention. Alzheimer Disease and Associated Disorders, 15, 137–145. doi:10.1097/00002093-200107000-00005.PubMedCrossRefGoogle Scholar
- 38.Zarit, S. H., Stephens, M. A., Townsend, A., & Greene, R. (1998). Stress reduction for family caregivers: Effects of day care use. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 53B, S267–S277.Google Scholar
- 39.Roth, D. L., Mittelman, M. S., Clay, O. J., Madan, A., & Haley, W. E. (2005). Changes in social support as mediators of the impact of a psychosocial intervention for spouse caregivers of persons with Alzheimer’s disease. Psychology and Aging, 20, 634–644. doi:10.1037/0882-79188.8.131.524.PubMedCrossRefGoogle Scholar