Background and Purpose—Behavioral and psychological symptoms associated with stroke are gaining increasing attention in a field in which recovery of physical function has dominated. A small body of research has begun to suggest that stroke survivors' (SSs') behavioral and psychological symptoms contribute to family caregivers' experiences of emotional distress. The objective of this research was to determine the unique contribution of SS behavioral and psychological symptoms on caregiver emotional distress during the first 2 years poststroke.
Method—A longitudinal cohort study was conducted of individuals who have survived their first stroke and their caregivers. Participants completed standardized measures by telephone interviews at 1, 3, 6, and 12 months poststroke. A subsample completed additional assessments 18 and 24 months poststroke. These longitudinal data were analyzed using mixed effects modeling.
Results—Three hundred ninety-nine SS/caregiver dyads participated. Overall, caregivers reported more emotional distress when caring for SSs exhibiting more depressive symptoms and more cognitive impairment and when caregivers were younger, female, in poorer physical health, experienced more lifestyle interference, and reported less mastery. SSs' physical disability, stroke severity, and comorbidity were not significant. The set of significant predictors remained consistent when examined in the subsample followed for 2 years (except SS cognitive impairment).
Conclusions—Interventions aimed at improving caregiver well-being should focus on enhancing clinical management of SSs' depression and better preparing caregivers to manage behavioral and psychological symptoms. In addition, respite programs that encourage caregivers to maintain participation in valued activities may be beneficial.