Brain donation in normal aging: procedures, motivations, and donor characteristics from the Biologically Resilient Adults in Neurological Studies (BRAiNS) Project

Abstract

Medical autopsy rates have been declining for the past several decades, yet, for more than a decade, the University of Kentucky Alzheimer's Disease Research Center has been recruiting healthy older adults into a program involving annual assessments of mental status, biannual medical and neurological exams, and prearranged postmortem brain examination. The present article focuses on the characteristics of these donors to explore potential factors that contribute to the decision to donate. The motivations of this unique group of individuals could serve to inform physicians who request autopsies for medical and research purposes. Over 500 volunteers who have enrolled in this program are well-educated community-dwelling adults over the age of 60. They are generally motivated by personal experiences with Alzheimer's disease, referral by someone already enrolled, and a desire to promote scientific knowledge. These volunteers' reasons suggest that rates of tissue donation or autopsy for basic research and investigations of causes of death might be increased by providing individuals and families with information concerning the medical and scientific value of the procedure. Within research settings, encouraging participant recruitment of friends or family members would likely increase tissue acquisition rates.