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More than 4 million persons in the United States are believed to have Alzheimer disease. Seven of 10 are cared for in the community by family members who make numerous decisions ranging from those that have to do with personal care and daily activities to participation in research. Families who do participate in research or who agree for the dementia-impaired individual to participate, do so for a variety or reasons, including the altruistic reason of finding a cure or treatment that may help others. This paper looks at the caregiving experience and those issues that may influence the family to participate in research, what families expect from research, and how they expect researchers to treat the impaired relative.
Ferris et al. (Thu,) studied this question.