Research with mentally incompetent aged requires involvement and consent from their proxy. We retrospectively inquired about proxies' decisions to allow their charges to participate in a study with minimal risk and were surprised that 1/3 of the proxies were not supportive of research in nursing homes, 40% of them felt that their charge would not have agreed to participate in this study, and 20% would not have participated in the study themselves. To more fully explore proxies' attitudes and competent charges' attitudes towards research and participation in research studies, we will interview aged people and their proxies and test the following hypotheses: 1) That proxies perceptions of their competent charges' attitudes about research in general and about research projects in particular, significantly underestimate the charges' supportive attitude. 2) That significantly more competent aged will agree to research participation than would be allowed by their attitude. 3) That the willingness of the proxies to allow their charges to participate in research projects is significantly related to: a) proxy support of research in aged; b) proxy support of research in nursing homes; c) proxy perception of the willingness of their charges' to participate; and d) proxy's attitude about his/her own participation. 4) Significantly more proxies will be: a) supportive of hospital than of nursing home research; and b) supportive of research with young than with aged. 5) Proxies of incompetent nursing home patients will be significantly less supportive of research in nursing homes and with aged people than either proxies of competent nursing home patients or proxies of competent community aged. In addition, the proxy is responsible for making the decision for autopsy. The rate of autopsies of the aged has become exceedingly low (4%). Through a randomized trial, we will test the hypotheses: 6) That intensive education and ant-mortem requests for an organ- specific autopsy will each significantly increase the rate of autopsy permission.
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