scholarly journals Perspectives surrounding brain donation among African American research participants in the Northwestern University Alzheimer’s Disease Center

2020 ◽  
Vol 16 (S7) ◽  
Author(s):  
Deborah Nicole Dyslin ◽  
Sara Rose Dunlop ◽  
Brenda Aldridge ◽  
Robin Tillotson ◽  
Darby Morhardt
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
African American ◽  
Research Participants ◽  
Brain Donation ◽  
Northwestern University ◽  
American Research

scholarly journals Attitudes About Brain Donation Among African American Research Participants

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 746-746
Author(s):  
Deborah Dyslin ◽  
Sara Dunlop ◽  
Brenda Aldridge ◽  
Robin Tillotson ◽  
Darby Morhardt
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
African American ◽  
Brain Research ◽  
Qualitative Content Analysis ◽  
Cognitive Status ◽  
Research Participants ◽  
Disease Research ◽  
Brain Donation ◽  
American Research

Abstract Alzheimer’s and related dementias (ADRD) disproportionately affect the African American community. Brain donation, a crucial part of translational research, is less common among African American research participants compared to White research participants at Alzheimer’s Disease Research Centers (ADRCs) across the US. Existing literature suggests three categories of contributory factors for African Americans: concerns and misconceptions about brain research and brain donation; religious beliefs; and the role of the family. Existing knowledge of community interventions is limited. We conducted seven focus groups, stratified by brain donation intent and cognitive status, to capture the perspectives of African American research participants. Qualitative content analysis reveal the following contributory themes: personal connection to memory loss or dementia; altruism; spirituality/religion; historical and current racism in health care and research; trauma and objectification; trust; representation; understanding the purpose and process of brain donation; and fluidity in decision-making. Future research will explore trauma-informed and culturally responsive interventions. Part of a symposium sponsored by the Alzheimer’s Disease Research Interest Group.

P-141: Knowledge of depression among African American Alzheimer's disease caregivers

2007 ◽  
Vol 3 (3S_Part_2) ◽  
pp. S143-S144
Author(s):  
Yvonne G. Hipps ◽  
Robin Socci ◽  
Harry Strothers ◽  
Regine Denis ◽  
Brenda Hayes
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
African American ◽  
Knowledge Of Depression

ABCA7, a Genetic Risk Factor Associated with Alzheimer’s Disease Risk in African Americans

2022 ◽  
pp. 1-15
Author(s):  
Kaitlyn E. Stepler ◽  
Taneisha R. Gillyard ◽  
Calla B. Reed ◽  
Tyra M. Avery ◽  
Jamaine S. Davis ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
African American ◽  
Amyloid Beta ◽  
Disease Risk ◽  
African Ancestry ◽  
European Ancestry ◽  
Black Adults ◽  
American Black ◽  
The Impact

African American/Black adults are twice as likely to have Alzheimer’s disease (AD) compared to non-Hispanic White adults. Genetics partially contributes to this disparity in AD risk, among other factors, as there are several genetic variants associated with AD that are more prevalent in individuals of African or European ancestry. The phospholipid-transporting ATPase ABCA7 (ABCA7) gene has stronger associations with AD risk in individuals with African ancestry than in individuals with European ancestry. In fact, ABCA7 has been shown to have a stronger effect size than the apolipoprotein E (APOE) ɛ4 allele in African American/Black adults. ABCA7 is a transmembrane protein involved in lipid homeostasis and phagocytosis. ABCA7 dysfunction is associated with increased amyloid-beta production, reduced amyloid-beta clearance, impaired microglial response to inflammation, and endoplasmic reticulum stress. This review explores the impact of ABCA7 mutations that increase AD risk in African American/Black adults on ABCA7 structure and function and their contributions to AD pathogenesis. The combination of biochemical/biophysical and ‘omics-based studies of these variants needed to elucidate their downstream impact and molecular contributions to AD pathogenesis is highlighted.

On the personal utility of Alzheimer’s disease-related biomarker testing in the research context

2018 ◽  
Vol 44 (12) ◽  
pp. 830-834 ◽  
Author(s):  
Eline M Bunnik ◽  
Edo Richard ◽  
Richard Milne ◽  
Maartje H N Schermer
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Information Provision ◽  
Research Participants ◽  
Personal Utility ◽  
Prevention Studies ◽  
Biomarker Testing ◽  
Asymptomatic Individuals ◽  
Ad Prevention ◽  
Explicit Request

Many healthy volunteers choose to take part in Alzheimer’s disease (AD) prevention studies because they want to know whether they will develop dementia—and what they can do to reduce their risk—and are therefore interested in learning the results of AD biomarker tests. Proponents of AD biomarker disclosure often refer to the personal utility of AD biomarkers, claiming that research participants will be able to use AD biomarker information for personal purposes, such as planning ahead or making important life decisions. In this paper, the claim that AD biomarkers have personal utility for asymptomatic individuals is critically assessed. It demonstrates that in the absence of clinical validity, AD biomarkers cannot have personal utility and do not serve research participants’ autonomy. Over the next few years, many research groups will be confronted with participants’ preferences to learn the results of AD biomarker tests. When researchers choose to make results available upon explicit request, they should ensure adequate information provision and education, notably on the uncertain clinical significance of AD biomarker information. Routine disclosure of AD biomarkers to cognitively unimpaired individuals in research settings cannot be justified with an appeal to the personal utility of AD biomarker information.

scholarly journals LATINOS’ PERCEPTIONS AND CONCERNS ABOUT ALZHEIMER’S DISEASE

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S543-S543
Author(s):  
Laura Y Cabrera
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
African American ◽  
Alzheimer Disease ◽  
Focus Groups ◽  
Puerto Ricans ◽  
A Priori ◽  
Cultural Beliefs ◽  
Single Group ◽  
Health Aging

Abstract Several studies indicate that Latinos are at higher risk of developing Alzheimer Disease (AD). While research has centered on African-American/White or Latino/non-Latino differences, there exists heterogeneity within those groups. Clustering Latinos under a single group in AD resources, neglects cultural, biological and environmental differences. To address this complexity we examine perceptions and concerns about AD symptoms, diagnosis, and care among Mexicans and Puerto Ricans via six focus groups. A priori variables for thematic exploration include familiarity, cultural beliefs, trust, privacy, notions of identity and personhood. We use a pragmatic neuroethics framework as a lens to discuss and assess our findings and related implications. This will help address the multidimensional and multidirectional nature of knowledge and communication about diagnosis, treatments and nature of AD. These findings will help to identify differences and similarities among two distinct Latino groups, thereby contributing to scholarship in the fields of Latino’s health, aging, and neuroethics.

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