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 relatives with dementia; to study the changes in caregiver functioning over time.

DESIGN

A prospective longitudinal follow-up study.

SETTING

Individual homes and chronic care facilities in Montreal.

PARTICIPANTS

157 caregiver-dependent dyads, followed up 2 years later; dependents had been diagnosed as having progressive dementia.

MEASUREMENTS

A standard interview and a series of standardized psychological questionnaires were given to caregivers, assessing their functioning and their appraisals 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 caregivers did not prepare their relative before institutionalization. Most caregivers were satisfied with having ended home care and believed the decision was positive for themselves and their dependent, but a sizable minority of caregivers and dependents had difficulty adjusting to the end of home care. Repeated measures multivariate analyses indicated that caregivers who had discontinued home care because of placement or death of the dependent had improved functioning and quality of life and better health than caregivers still providing home care.

CONCLUSIONS

Caregivers most frequently cite deteriorating patient conditions as the main causes of ending home care. Caregiver exhaustion is the single most frequently given reason. Caregivers who were still providing home care at the end of the study were functioning less well than caregivers who had ended home care, despite having initially functioned at better levels.