Burden and well-being among caregivers: examining the distinction.

PURPOSE This study assessed overall quality of life of caregivers, using a path model in which burden was conceptualized as distinct from well-being. DESIGN AND METHODS Data were drawn from a representative sample of caregivers to dementia and nondementia care receivers in British Columbia, Canada (N = 243). The model used was based on a previously proposed stress/appraisal path model and used multiple regression path estimates. Primary stressors were care receiver cognitive status, physical function, and behavioral problems; the primary appraisal variable was hours of caregiving during the previous week. Mediators were perceived social support, frequency of getting a break, and hours of formal service use; secondary appraisal was subjective burden. The outcome measure was generalized well-being. RESULTS Well-being was directly affected by four variables: perceived social support, burden, self-esteem, and hours of informal care. Burden was affected directly by behavioral problems, frequency of getting a break, self-esteem, and informal hours of care and was not affected by perceived social support. DISCUSSION The finding that perceived social support is strongly related to well-being but unrelated to burden reinforces the conceptual distinctiveness of the latter two concepts. This suggests that quality of life of caregivers could be improved even with burden in their lives and that the overwhelming focus in caregiving research on burden should be supplemented with an emphasis on quality of life.