Family Perceptions of Living with Alzheimer's Disease


  • This collaborative research project was funded by the All-University Council on Aging (A. Garwick, P.I.); the National Institute on Aging, Project #1-P50-MH40317–01 (P. Boss, P.I.); and the Alzheimer's Association/Sage Foundation Pilot Research Grant, PRG-90–131 (D. Detzner, P.I.). The authors acknowledge the contributions to this project of Dr. Donald McTavish and research assistants Wayne Caron, Carol Elde, and Joan Horbal.


The purpose of this study was to identify the major themes that 38 multigenerational families emphasized in their conversations about living with Alzheimer's disease. Interviews were conducted with families that were providing home care in the early stages of the disease. Family perceptions were analyzed with the aid of a computer content analysis program. Families emphasized four themes: (a) the awareness that something was “wrong”; (b) the uncertain nature of the diagnosis; (c) excluding a family member; and (d) the ambiguous nature of family life with Alzheimer's disease.