University of Wisconsin–Madison

Category: Gender Differences and Specific Populations

Getting AHEAD of Alzheimer’s with Inclusive Clinical Trials

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Dementia Matters Special Series: Voices of Research Participants

When Ms. Carol Turner found out her family had a history of Alzheimer’s disease, she wanted to know how she could help herself and others with similar experiences. After learning about the AHEAD Study, which is testing a treatment that could delay memory loss before Alzheimer’s symptoms appear, she signed up to participate in this ground-breaking research. Ms. Turner joins the final episode in our Voices of Research Participants series to discuss her journey as a research participant, how she became an advocate for others in her community and the power of representation in clinical trials.

Guest: Ms. Carol Turner, AHEAD Study participant

Co-host: Sarah Walter, MSc, program administrator, Alzheimer’s Clinical Trials Consortium (ACTC) and Alzheimer’s Therapeutic Research Institute (ATRI)

Advocating for All: The Impact of Community and Equity in Dementia Research

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Dementia Matters Special Series: Voices of Research Participants

What do you do when dementia symptoms begin to upend your entire life? For Brother John-Richard Pagan, the answer was to persist in finding a diagnosis and a supportive community that aligned with his values. In this episode of our Voices of Research Participants series with co-host Sarah Walter, MSc, Br John-Richard describes how he went from a PhD student to a dementia research participant and his journey getting diagnosed with Lewy body dementia (LBD). Br John-Richard also discusses how his background in clinical psychology influenced his participation in research and his advocacy for disabled, LGBTQ+ and other marginalized community members in medical research.

Guest: Br John-Richard Pagan, MS, veteran, monastic, Episcopal Ecumenical Community, advocate, Lewy Body Dementia Association (LBDA)

Co-host: Sarah Walter, MSc, program administrator, Alzheimer’s Clinical Trials Consortium (ACTC) and Alzheimer’s Therapeutic Research Institute (ATRI)

A Fair Fight Against Alzheimer’s: The Need for Equity in Dementia Research and Care

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How can we ensure that all communities are represented in Alzheimer’s and related dementias research and have access to the latest treatments and interventions? Dr. Carl Hill, the chief diversity, equity and inclusion (DEI) officer for the Alzheimer’s Association, joins the podcast to delve into the significance of representation, diversity, equity, equality and inclusion within Alzheimer’s disease research. He discusses the challenges of underrepresentation in clinical trials, the importance of community-based participatory research (CBPR) and the social determinants of health that influence Alzheimer’s risk.

Guest: Carl V. Hill, PhD, MPH, chief diversity, equity and inclusion officer, Alzheimer’s Association

Study Shows APOE Gene Affects Hispanic Populations’ Risk of Cognitive Decline Differently to Non-Hispanic Populations

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The APOE gene is recognized as a significant genetic risk factor for cognitive decline, with different alleles, like APOE e2, being seen as protective against decline and others, like APOE e4, indicating an increased risk for cognitive decline. However, new studies are looking at whether these trends are universal across different racial and ethnic groups. Dr. Cally Xiao joins the podcast to discuss her study, which focuses on how different APOE alleles affect risk for Alzheimer’s disease within Hispanic populations compared to non-Hispanic populations.

Guest: Cally Xiao, PhD, Project Specialist, Global Alzheimer’s Association Interactive Network, Laboratory of Neuro Imaging, University of Southern California

Deciding to Donate: Barriers and Benefits of Brain Donations for Diverse Populations

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Dr. Crystal Glover, health equity in aging researcher at Rush Alzheimer’s Disease Center, joins the podcast to discuss the importance of increasing brain donations and tissue samples from older adults of underrepresented backgrounds. Dr. Glover talks about the reasons why participants may be interested in brain donations, the barriers that they may face, and the benefits of combining both qualitative and quantitative data within her research. This episode is part of a series featuring speakers from the National Alzheimer’s Coordinating Center’s (NACC) Fall 2022 ADRC Meeting, where the overarching theme was Diversity, Equity, and Inclusion (DEI) in ADRC research and operations. 

Guest: Crystal Glover, PhD, leader, Outreach, Recruitment, and Engagement Core, Rush Alzheimer’s Disease Center, Associate Professor, Department of Psychiatry and Behavioral Sciences, Division of Behavioral Sciences, Rush Medical College

Understanding the Social Determinants of Health and Disparities in Alzheimer’s Research

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Dr. Lisa Barnes joins the podcast to discuss her research focusing on how social determinants of health, specifically racial differences, affect chronic diseases of aging.She explains the difference between equality, equity and justice, and the different drivers of disparities within the medical field. This episode is part of a series featuring speakers from the National Alzheimer’s Coordinating Center’s (NACC) Fall 2022 ADRC Meeting, where the overarching theme was Diversity, Equity, and Inclusion (DEI) in ADRC research and operations. 

Guest: Lisa Barnes, PhD, Alla V. and Solomon Jesmer Professor of Gerontology and Geriatric Medicine, Rush University Medical Center, neuropsychologist, Rush Alzheimer’s Disease Research Center

The National Strategy for Diversifying Alzheimer’s Research

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Dr. Sarah Biber, the program director for the National Alzheimer’s Coordinating Center (NACC), joins the podcast to discuss efforts to increase representation and equitable practices across the 37 Alzheimer’s Disease Research Centers (ADRCs). She discusses key disparities in Alzheimer’s disease research, why diversity and inclusion are imperative in research, and what is being done to address these disparities with the data collected from research participants. This episode is the first of an upcoming series featuring speakers from the Fall 2022 ADRC Meeting, where the overarching theme was Diversity, Equity, and Inclusion (DEI) in ADRC research and operations. 

Guest: Sarah Biber, PhD, program director, National Alzheimer’s Coordinating Center

Disclosing Alzheimer’s Disease Biomarker Results in Diverse Populations

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Dr. Annalise Rahman-Filipiak joins the podcast to discuss her research focused on disclosing neuroimaging biomarkers across diverse populations. She addresses why some people might want to know their biomarker results, while others might not, and how careful disclosure of these results to at-risk individuals may help prepare them and their families for the future through personalized treatment, research engagement, advanced planning and emotional support.

Guest: Annalise Rahman-Filipiak, PhD, assistant professor, neuropsychologist, department of psychiatry, University of Michigan

Study Shows APOE e4 Not Associated with Alzheimer’s Disease in American Indian Populations

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Researchers typically recognize the APOE e4 gene as a significant genetic risk factor for cognitive decline and dementia. However, a new study has found that the allele is not linked to neurodegeneration for all races and ethnic groups, specifically for American Indian populations. Dr. Astrid Suchy-Dicey joins the podcast to discuss her study, the importance of representation in Alzheimer’s disease research, hypotheses for why this allele isn’t a risk factor for all populations and what it means for research going forward.

Guest: Astrid Suchy-Dicey, PhD, epidemiologist, assistant research professor, Washington State University, Institute for Research and Education to Advance Community Health (IREACH)

Scientific Importance of Diversity in Alzheimer’s Disease Research

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AAIC Special Series Part 5:

Bringing together scientists, clinicians, and research participants from all over the world, AAIC 2022 showcases the work and experiences of people from unique backgrounds and perspectives and highlights the importance of diversity in Alzheimer’s disease research. Dr. Carl Hill joins the podcast to discuss why diversity is important in scientific research and how AAIC 2022 supports efforts to make Alzheimer’s disease research more equitable and inclusive.

Guest: Carl Hill, PhD, MPH, chief diversity, equity and inclusion officer, Alzheimer’s Association

Women’s Health Month: Women and Alzheimer’s Disease

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In honor of Women’s Health Month, Dr. Jessica Caldwell joins the podcast to discuss sex differences in aging and Alzheimer’s disease. She explains some of the ways women experience aging and Alzheimer’s disease differently than men and how she incorporates research findings into patient care. 

Guest: Jessica Caldwell, PhD, director, Women’s Alzheimer’s Movement Prevention Center, Cleveland Clinic in Las Vegas, assistant professor, Case Western Reserve University

Disaggregating Racial Data: How Studying Ethnic Subgroups Can Improve Research

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A graduate student from the University of Wisconsin–Madison is pushing for the disaggregation of data in research to better understand how individuals from different ethnic subgroups are represented as research participants and as researchers. Kao Lee Yang began writing and discussing the topic after the Howard Hughes Medical Institute’s Gilliam Fellowship for Advanced Study rejected her application for not meeting their racial and ethnic underrepresentation criteria, despite often being the only Hmong American scientist in many research spaces. Yang joins the podcast to discuss her opinion piece for STAT News, the problems with using aggregated data, and how the push to study individual ethnic groups could improve Alzheimer’s disease research.

Guest: Kao Lee Yang, MPA/PhD candidate in the Neuroscience and Public Policy Program and Bendlin Laboratory, University of Wisconsin–Madison

Incorporating Cultural Knowledge: Improving Alzheimer’s Disease Research for Veterans and Native Americans

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Dr. Cynthia Carlsson and Daniel A. King join the podcast to discuss some of the unique ways that Alzheimer’s disease affects Veterans and Native Americans. Their work at the Wisconsin Alzheimer’s Disease Research Center allows them to connect with people who are at higher risk for Alzheimer’s disease and help educate them on how to maintain brain health, both through Dr. Carlsson’s research and clinical practice and Mr. King’s outreach to Veterans and Native Americans. Discussing the importance of current outreach and educational efforts as well as what they’ve learned from engaging with Veterans and Native Americans, Dr. Carlsson and Mr. King describes how understanding different cultures and community experiences can help Alzheimer’s disease research better support underserved populations.

Guests: Cynthia Carlsson, MD, MS, professor of medicine and Alzheimer’s disease researcher, University of Wisconsin School of Medicine and Public Health, geriatrician, William S. Middleton Memorial Veterans Hospital, and Daniel A. King, member of the Oneida Nation of Wisconsin, Veteran recruitment coordinator, Wisconsin Alzheimer’s Disease Research Center

Accessibility and Community: Bringing Alzheimer’s and Dementia Resources to the Latinx Community

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UsAgainstAlzheimer’s newly-released tool, BrainGuide, may seem like a simple questionnaire, but the project highlights a growing movement to make Alzheimer’s disease research and resources accessible to a broader range of communities. Released in 2021, BrainGuide is a one-of-a-kind resource that provides information about Alzheimer’s disease in English and Spanish through online and telephone questionnaires. Dr. Maria Mona Pinzon, a physician-scientist at the University of Wisconsin School of Medicine and Public Health and a consultant on BrainGuide, joins the podcast to discuss the impacts this project has had on educating the Latinx community about Alzheimer’s disease. Discussing the barriers and risks that the Latinx community face surrounding brain health, the ways to connect with the community through research, and her experience working on BrainGuide, Dr. Pinzon highlights the importance and impacts of community-tailored research and resources. 

Guest: Maria Mona Pinzon, MD, MS, University of Wisconsin School of Medicine and Public Health

Tackling Stigma and Alzheimer’s Disease within the AAPI Community

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Vince Tien and Dr. Dung Trinh join the podcast to discuss the many ways Alzheimer’s disease affects the Asian Americans and Pacific Islanders (AAPI) community. Vince Tien and Dr. Trinh both work as part of 360 Clinic, a multi-specialty medical group focused on telehealth services. With their experience in healthcare and telehealth services amidst the pandemic, Tien and Dr. Trinh describe the barriers and stigma that discourage the AAPI community from seeking help for dementia and the ways that we can dismantle those barriers. 

Guests: Vince Tien, co-founder, CEO, 360 Clinic, and Dung Trinh, MD, chief medical officer, 360 Clinic