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Decision-making for persons with cognitive impairment and their family caregivers

Family Caregiver Alliance, San Francisco, California.

J. Whitlatch, PhD

The Benjamin Rose Institute, Cleveland, Ohio.

Despite the large number of persons affected by cognitive impairment, very little is known about how they and their families make choices and decisions about everyday living and long-term care. Moreover, few studies have examined the concept of consumer direction, particularly the ability of cognitively impaired persons to delegate decision-making to other persons. This study explored decision-making through personal interviews with 51 respondent pairs, or dyads (i.e., the cognitively impaired person and the family caregiver). Results suggest that persons with mild to moderate cognitive impairment are able to answer questions about their preferences for daily care and to choose a person, usually a spouse or adult child, to make a variety of decisions on their behalf. By recognizing both voices—those of the care receiver and the family caregiver—we can enhance future research and practice, foster the development of consumer direction in long-term care, and advance public policy to support caregiving families.

Key Words: Alzheimer's disease • dementia • caregivers • consumer direction • decision-making

American Journal of Alzheimer's Disease and Other Dementias®, Vol. 17, No. 4, 237-244 (2002)
DOI: 10.1177/153331750201700406


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