WHEN HOME CAREGIVING ENDS - A LONGITUDINAL-STUDY OF OUTCOMES FOR CAREGIVERS OF RELATIVES WITH DEMENTIA

OBJECTIVES: To study caregivers' decisions to end home care for relati ves with dementia; to study the changes in caregiver functioning over time. DESIGN: A prospective longitudinal follow-up study. SETTING: Ind ividual homes and chronic care facilities in Montreal. PARTICIPANTS: 1 57 caregiver-dependent dyads, followed up 2 years later; dependents ha d been diagnosed as having progressive dementia. MEASUREMENTS: A stand ard interview and a series of standardized psychological questionnaire s were given to caregivers, assessing their functioning and their appr aisals of the dependent person in their care. Dependents received the Mini-Mental State Examination. MAIN RESULTS: Caregivers cited patient deterioration as the most common reason for ending home care. Most car egivers did not prepare their relative before institutionalization. Mo st caregivers were satisfied with having ended home care and believed the decision was positive for themselves and their dependent, but a si zable minority of caregivers and dependents had difficulty adjusting t o the end of home care. Repeated measures multivariate analyses indica ted that caregivers who had discontinued home care because of placemen t or death of the dependent had improved functioning and quality of li fe and better health than caregivers still providing home care. CONCLU SIONS: Caregivers most frequently cite deteriorating patient condition s as the main causes of ending home care. Caregiver exhaustion is the single most frequently given reason. Caregivers who were still providi ng home care at the end of the study were functioning less well than c aregivers who had ended home care, despite having initially functioned at better levels.