Perceived Impediments to Completed Brain Autopsies Among Diverse Older Adults Who Have Signed a Uniform Anatomical Gift Act for Brain Donation for Clinical Research

Abstract

Background: A small number of older adults in the United States who agree to brain donation for clinical research belong to diverse racial, ethnic, and economic groups. Those who agree, however, are less likely to have completed brain autopsies compared with older non-Latino Whites of higher socioeconomic status. As such, our understanding of Alzheimer's disease and related dementias remains limited in these underrepresented and understudied populations. Here, we examine perceived impediments to completed brain autopsies among diverse older adults who have agreed to brain donation for clinical research. Methods: Participants (N=22) were older adults (mean age=77 years) who self-identified as African American (n=8), Latino (n=6), or White of lower income (n=8). All participants had previously agreed to brain donation via the Uniform Anatomical Gift Act. Each participant took part in a one-time, semi-structured focus group. Data were analyzed using a Grounded Theory Approach with both Open Coding and Constant Comparative Coding. Results: Perceived impediments to completed brain autopsies varied by group. Older African Americans and older Latinos expressed concern about a lack of follow-through by family members regarding their brain donation wishes. Older Whites of lower income indicated that their own uncertainty surrounding the processes of brain donation and brain autopsy might serve as an impediment. Discussion: Diverse older adults expressed different perceived impediments to having brain autopsies completed upon their death. Continuous education for diverse older adults and their family members regarding brain donation for clinical research, including clear guidelines and processes, may facilitate completed brain autopsies among diverse older adults.

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