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.Ethn Dis. 2020;30(Suppl 2):709-718; doi:10.18865/ed.30.S2.709

Alzheimer disease in African American individuals: increased incidence or not enough data?

“…Another study was a randomized trial within senior centres that evaluated the ability of a community choir programme called “The Community of Voices” to promote health and well-being 77 . Such approaches integrated with rigorous mixed methods can reveal unique participant perspectives about barriers to and facilitators of study participation, particularly for studies that require a higher level of commitment, such as brain autopsy 78 , 79 .…”

To donate, or not to donate, that is the question: Latino insights into brain donation

“…18 These findings further suggest the need for educational information targeting not only the donor, but their families as well, as is supported by Glover et al's findings indicting a lack of family follow-through as a barrier to successively completing brain autopsies. 17 Family involvement in this process is an important component in donor decision-making, enrollment, and a completed brain autopsy. 26,27 Different theories and models have been proposed to predict behavioral intention to donate.…”

“…Only a handful of studies have explored organ donation among Latinos, [12][13][14] and even fewer focus on Latinos' attitudes and challenges to BD. [15][16][17][18] In prior research, Latino study participants expressed concern about a lack of follow-through by family members regarding their BD wishes after they signed the Uniform Anatomical Gift Act for research. 17 In Montoya et al, 18 Latinos described sociocultural barriers and lack of knowledge about the BD process as influential factors to not support BD.…”

“…[15][16][17][18] In prior research, Latino study participants expressed concern about a lack of follow-through by family members regarding their BD wishes after they signed the Uniform Anatomical Gift Act for research. 17 In Montoya et al, 18 Latinos described sociocultural barriers and lack of knowledge about the BD process as influential factors to not support BD. Boise et al 15 found that age, Latino ethnicity, understanding of how the brain is used by researchers, and what subjects need to do to ensure that their brain will be donated to be significant positive predictors to donate.…”

Brain Donation Decisions as Disease Specific Behaviors: An Elucidation of the Donation Process in the Context of Essential Tremor

“…For each potential ETCBR donor, there are additional factors that affect the likelihood of a decision to donate. In general, the brain donation literature describes the following aspects as positive factors that may increase the likelihood: plans for cremation as a funeral arrangement, support from family members, and having access to a clear explanation of how the donation takes place [ 51 52 ]. On the other hand, data also show that families that do not see the brain donation decision as an individual choice, that fear financial gain from the research team, and who are of African American or Asian ethnicity are all less likely to complete brain donations [ 51 ].…”