Perceptions, Knowledge, Incentives, and Barriers of Brain Donation Among African American Elders Enrolled in an Alzheimer's Research Program

Lambe, Susan; Cantwell, Nicole G.; Islam, Fareesa; Horvath, Kathy J.; Jefferson, Angela L.

doi:10.1093/geront/gnq063

Cited by 54 publications

(77 citation statements)

References 26 publications

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“…Bonner et al found family disagreement about donation, concern over funeral arrangements, and inadequate information about the donation process as barriers [10]. Our work also suggests that misconceptions about brain donation procedures exist, and racial mistrust may deter individuals from consenting to brain donation [12]. Health literacy, or the degree to which one is able to gather, process, and understand relevant medical information to make an appropriate health-related decision, may also play a role in donation assent.…”

Section: Introductionmentioning

confidence: 60%

“…In our prior work on barriers and incentives to brain donation among African American older adults [12], participants reported that group-based discussions about brain donation that include family members are critical to increasing donation knowledge and facilitating donor decisions. In 2009, we held two focus groups with a subset of African American registry participants ( n = 11 with one loved one attending) to develop and refine the discussion content for the informational intervention in the present study.…”

Section: Methodsmentioning

confidence: 99%

“…A primary goal of the BU ADC is to assess barriers and incentives to research participation, particularly for the brain donation program. Recent efforts have focused on understanding brain donation program participation barriers among the African American community served by the BU ADC [11, 12]. To advance these efforts, this study had two aims.…”

Section: Introductionmentioning

confidence: 99%

“…The second aim was to quantitatively assess changes in attitudes toward medical research before and after participation in the group discussion. Based on our prior work [11, 12] and that of the broader literature [15, 17, 18], our hypothesis was that participants would have a more favorable attitude toward research after participating in the group discussion as compared to pre-discussion assessments. Finally, as a function of resolving misperceptions about donation and enhancing attitudes toward clinical research, we hypothesized that participants would express an increased interest in brain donation program participation following group participation.…”

Section: Introductionmentioning

confidence: 99%

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An Intervention to Enhance Alzheimer's Disease Clinical Research Participation among Older African Americans

Jefferson

Lambe

Romano

et al. 2013

JAD

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Background Alzheimer’s disease (AD) rates are higher among African Americans than in other racial or ethnic groups. However, Black elders participate in research at lower rates than Whites. Objective The present study aimed to: (1) implement an informational protocol for African Americans elders and their loved ones about the benefits of clinical research and brain donation program participation in AD, and (2) quantitatively assess changes in knowledge, attitudes, and trust. Methods Participants included 52 African American participants from the Boston University Alzheimer’s Disease Center research registry (74 ± 8 years, 83% female) and 11 loved ones. Registry participants completed a pre- and post-group survey assessing brain donation knowledge, factors influencing brain donation, attitudes about medical research, and trust in medical researchers. Results There were no significant changes in mean scores between the pre- and post-group surveys. However, post-group outcomes revealed that 69% of participants shared details from the protocol with loved ones, 27% expressed an interest in joining Center-sponsored studies, and 10% indicated an interest in changing their brain donation status. Conclusion The informational protocol implemented in this study is an effective method to encourage family discussions about brain donation and increase interest in other AD research studies. Longitudinal follow-up is necessary to assess the long-term implications of these groups on participation in a brain donation program.

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Section: Introductionmentioning

confidence: 60%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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An Intervention to Enhance Alzheimer's Disease Clinical Research Participation among Older African Americans

Jefferson

Lambe

Romano

et al. 2013

JAD

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show abstract

“…Others believe that past abuses, such as the Tuskegee syphilis study, have soured the relationship between researchers and racial and ethnic minorities (Wendler et al, 2006). This belief is reinforced by evidence from focus groups with African Americans with AD and their caregivers (Connell, Shaw, Holmes, & Foster, 2001;Lambe, Cantwell, Islam, Horvath, & Jefferson, 2011).…”

Section: Participation In Research Studiesmentioning

confidence: 99%

Racial and Ethnic Disparities Among Individuals with Alzheimer’s Disease in the United States: A Literature Review

Lines¹,

Sherif²,

Wiener³

2014

115

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This study reviews the published literature on racial and ethnic disparities among people with Alzheimer’s disease (AD) and related dementias in the United States. To identify relevant studies, we searched electronic sources for peer-reviewed journal articles and unpublished research reports that were published through July 2014; related to the AD population and their caregivers; and provided evidence of racial and ethnic disparities, discussed reasons for disparities, or described interventions to address disparities. The literature shows consistent and adverse disparities among blacks and Hispanics compared with non-Hispanic whites concerning AD, including the disease’s prevalence and incidence, mortality, participation in clinical trials, use of medications and other interventions, use of long-term services and supports, health care expenditures, quality of care, and caregiving. The literature suggests numerous underlying causes, including factors related to measurement of the disease, genetics, socioeconomic factors, cultural differences, lack of culturally competent clinicians, and discrimination. Although these disparities are well known, little is known about the effectiveness of various strategies, such as cultural competence training, to address these differences, and very few studies evaluate possible interventions.

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Perspective on the “African American participation in Alzheimer disease research: Effective strategies” workshop, 2018

Denny¹,

Streitz²,

Stock

et al. 2020

Alzheimer's & Dementia

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to address a major limitation of the ongoing scientific progress regarding Alzheimer's disease and related dementias (ADRD): participants in most ADRD research programs overwhelmingly have been limited to non-Hispanic white persons, thus precluding knowledge as to how ADRD may be represented in nonwhite individuals. Factors that may contribute to successful recruitment and retention of African Americans into ADRD research were discussed and organized into actionable next steps as described within this report.

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Perceptions, Knowledge, Incentives, and Barriers of Brain Donation Among African American Elders Enrolled in an Alzheimer's Research Program

Cited by 54 publications

References 26 publications

An Intervention to Enhance Alzheimer's Disease Clinical Research Participation among Older African Americans

An Intervention to Enhance Alzheimer's Disease Clinical Research Participation among Older African Americans

Racial and Ethnic Disparities Among Individuals with Alzheimer’s Disease in the United States: A Literature Review

Perspective on the “African American participation in Alzheimer disease research: Effective strategies” workshop, 2018

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