Long-term impact of stroke on family caregiver well-being

Abstract

Objective: Three-year changes in well-being were studied among family caregivers of an epidemiologically derived sample of stroke survivors from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study and compared to matched noncaregivers.Methods: Family caregivers of REGARDS participants who experienced a stroke event completed telephone interviews assessing depressive symptoms, mental and physical health quality of life (QOL), life satisfaction, and leisure satisfaction at approximately 9, 18, 27, and 36 months after the stroke (n 5 235). For each stroke caregiver, a family member of a stroke-free REGARDS participant was enrolled as a matched noncaregiving control (n 5 235) and completed similar interviews.Results: Multilevel longitudinal models found that caregivers showed poorer well-being at 9 months poststroke than controls on all measures except physical health QOL. Significant differences were sustained for 22 months after the stroke event for depressive symptoms, 31 months for mental health QOL, and 15 months for life satisfaction. For leisure satisfaction, differences were still significant at 36 months poststroke. Caregiving effects were similar across race and sex.Conclusions: Stroke caregiving is associated with persistent psychological distress, but life satisfaction, depression, and mental health QOL became comparable to noncaregivers by 3 years after stroke. Caregiver leisure satisfaction was chronically lower than in noncaregivers. Intervention for stroke caregivers should recognize both the strains faced by caregivers and their capacity for successful coping over time. Most studies of family caregivers of stroke survivors report that caregivers experience negative effects on their well-being.1,2 Most of this research has been cross-sectional and conducted within 1 year of the stroke 3 and uses convenience samples. Population-based samples allow for a better estimation of the public health effects of stroke caregiving. Including a demographically matched comparison group controls for differences in health and well-being due to factors such as age, sex, and race. 4 The purpose of this study was to examine long-term differences in well-being between a population-based sample of family caregivers of stroke survivors and demographically matched noncaregiving controls. The analyses focused on the following questions: (1) Do stroke caregivers and matched noncaregivers differ in well-being, and what is the magnitude of such effects? (2) How do differences in well-being between caregivers and noncaregivers change over time? (3) Do caregiving, race, and sex affect the trajectories of well-being changes?METHODS Participants. The Reasons for Geographic and Racial Differences in Stroke (REGARDS) study is a national, epidemiologic investigation of stroke incidence and mortality that enrolled 30,239 participants 45 years of age or older from 2003 to

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