Promoting a good death for persons with dementia in nursing facilities: family caregivers' perspectives

Abstract

The experience of dying from Alzheimer's disease (AD) in a nursing home setting is a poorly understood phenomenon. Fifty-seven family member caregivers of persons with Alzheimer's disease, who had died as a resident in a national nursing home chain, participated in a structured telephone interview. Despite the belief that their loved one had died with dignity, 16 out of 57 (28%) family member caregivers believed that their loved one had not experienced a good death. This article reviews the definition of a good death and the six themes of a good death found in the literature: pain and symptom management; clear decision making; preparation for death; completion; contributing to others; and affirmation of the whole person. Five standards for evaluating the quality of an anticipated death are discussed in relation to the experiences of the persons with AD. Finally, recommendations for how nurse administrators and other members of the healthcare team can promote a positive death experience for a person with AD are proposed.