Obtaining consent for autopsy in dementia research: The Memory and Aging Project experience

Abstract

Although clinical diagnostic inaccuracy rates in dementia have been reduced in recent years because of increased understanding of dementing disorders, autopsy remains the definitive means for diagnosis of Alzheimer's disease (AD). However, barriers to obtaining autopsy still exist. We report here the voluntary autopsy consent protocol developed by Washington University's Memory and Aging Project. Suggestions by staff and participants over the years have been implemented to develop a protocol that insures a successful autopsy program. From a wallet-sized card of instructions for family reference, to 24-hour availability of staff families and institutions are provided a smooth transition from place of death to autopsy. The rate of voluntary autopsy consent for Memory and Aging Project participants (70 percent) reflects the effectiveness of this program.