Registration of Alzheimer patients in an autopsy program: Who does it and why?

Abstract

Registration of Alzheimer patients with an autopsy program is essential for research, for post-mortem validation of clinical diagnosis, and for genetic counseling of relatives. Although the number of Alzheimer patients is increasing, those undergoing autopsy constitute a minority because their relatives may be unaware of the benefits of autopsy or may be uncomfortable with autopsy as a sensitive issue. To learn about what motivates the families of Alzheimer patients to register them in an autopsy program, we surveyed the demographic characteristics and attitudes toward brain autopsy of next of kin to 250 consecutive registrants of the St. Louis University Medical Center I Alzheimer', Association Brain Bank. Mean age of respondents at registration of the patient was 56.9 ± 12.06. One-third of the respondents were registrants' spouses -and three out of five respondents had a parent with Alzheimer's disease. All respondents but three were white, and two-thirds of them were women. Forty percent of the respondents were at first either opposed or undecided about autopsy. Main objections to autopsy were uncertainty about the benefits of autopsy, concerns about disfigurement of body, and concern about delay of the funeral. Support organizations, such as the Alzheimer's Association played a more important role in informing family members about the benefits of brain autopsy than patients' physicians or nursing home staff. The most common reason for wanting an autopsy was concern about a possible hereditary component of Alzheimer's disease. Twenty-eight percent of the respondents had another relative with dementia