Rush Alzheimer's Disease Center, Rush University Medical Center, Chicago, IL.
Department of Psychiatry and Behavioral Sciences, Rush University Medical Center, Chicago, IL.
Ethn Dis. 2020 Nov 19;30(Suppl 2):709-718. doi: 10.18865/ed.30.S2.709. eCollection 2020.
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.
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.
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.
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.
美国有少数老年参与者同意将大脑捐献给临床研究，他们属于不同的种族、民族和经济群体。然而，与社会经济地位较高的非拉丁裔白人相比，这些同意捐献的人进行大脑尸检的可能性更小。因此，我们对这些代表性不足和研究不足的人群中的阿尔茨海默病和相关痴呆症的了解仍然有限。在这里，我们研究了已经同意将大脑捐献给临床研究的不同老年参与者中，完成大脑尸检的感知障碍。
参与者（N=22）为年龄在 77 岁左右的老年人（平均年龄=77 岁），自我认同为非裔美国人（n=8）、拉丁裔（n=6）或低收入的白人（n=8）。所有参与者都曾根据《统一解剖礼物法》同意捐献大脑。每个参与者都参加了一次半结构化焦点小组。使用扎根理论方法进行数据分析，包括开放式编码和常数比较编码。
完成大脑尸检的感知障碍因群体而异。年长的非裔美国人和年长的拉丁裔人表示担心家属对他们的大脑捐赠意愿缺乏后续行动。收入较低的白人老年人则表示，他们自己对大脑捐赠和大脑尸检过程的不确定性可能是一个障碍。
不同的老年参与者对死后完成大脑尸检表示出不同的感知障碍。针对不同的老年群体及其家属，持续开展关于大脑捐献用于临床研究的教育，包括明确的指导方针和流程，可能有助于不同老年群体完成大脑尸检。
