Decision-making by family caregivers of elders experiencing dementia

Families provide the majority of care for persons with Alzheimer's disease. Multiple aspects of caregiving, including decision-making, lead to caregiver burden and stress. The purpose of this pilot study was to describe the decision situations faced by caregivers. Nine female spouse caregivers participated in focus groups to solicit the decision situations they faced while caring for their husbands. Some 183 decision situations were grouped into 14 decision-making topics and five other topical categories: physical safety and wellness; cognitive and emotional; relationships; caregiver well-being; and legal. Categories were organized under two themes: decision situations related to self-care and decision situations related to spouse care. The majority of decision situations relate to maintaining the caregiver's well-being. Implications for nursing and further study are discussed.