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
AAIC is the world’s largest forum for the dementia research community. Register for the plenary events, which are free to the public with registration, at the AAIC website.
Learn more about Dr. Carl Hill on the Alzheimer’s Association website.
Learn more about Henrietta Lacks’ story (mentioned by Dr. Hill at 8:53) by checking out the Mind Readers Book Club discussion about the book, The Immortal Life of Henrietta Lacks, on our YouTube page.
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Dr. Carl Hill Excerpt: It's really important to understand the diversity among dementia and then it's important to understand diverse perspectives and the pathways to risk.
Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.
Dr. Nathaniel Chin: Welcome back to another episode of Dementia Matters’ special series previewing the 2022 Alzheimer’s Association International Conference, where we’re getting to know some of the conference’s presenters in the lead up to the event running from July 31st to August 4th. AAIC is the world’s largest forum dedicated to advancing dementia science. By bringing together scientists, clinicians, research participants, and care partners from around the world to share the latest Alzheimer’s disease research, AAIC is able to showcase the work and experiences of people from diverse backgrounds and highlight the importance of diversity in research. Joining us to talk about the scientific importance of diversity within Alzheimer’s disease research is Dr. Carl Hill, chief diversity, equity, and inclusion officer for the Alzheimer’s Association. Dr. Hill, welcome to Dementia Matters.
Dr. Carl Hill: I'm so excited to be back on Dementia Matters. Thanks for having me here Nathaniel, and looking forward to the conversation. Good to talk with you again.
Chin: To begin, how did you first get involved with the Alzheimer's Association?
Hill: Well I tell you, the last time I was here I was working with the National Institute on Aging and directing the Office of Special Populations and I had a wonderful conversation with you about the Health Disparities Research Framework, so thank you for having me during that time. In that role I had a chance to develop some professional relationships with Alzheimer's Association staff, namely Dr. Maria Carrillo and Dr. Heather Snyder. It provided some support for a summer training program for early career investigators that I directed – the Butler-Williams Scholars Program. We developed a nice collaboration, really focused on the development of these young investigators who were starting out their careers, hosting a nice reception for them during their training week. I became knowledgeable of the disparities that exist in dementia and the lack of representation in the clinical trials and some of the issues as it pertains to recruitment of underrepresented populations like African Americans and Hispanic Latino populations into these trials. And so, I just really thought that working with the Alzheimer's Association and its over 70 chapters around the country would be a great way to contribute to this momentum of more inclusion, representation, and equity in dementia science.
Chin: And, for our listeners, I really encourage you to go back to that episode with Dr Hill. Your framework is still widely cited, and I was just at a conference where it was presented again, so it's an important and incredibly useful tool for our researchers when they're thinking about health disparity, and on the flip I think true inclusion in research.
Hill: Absolutely, and it really is a real calling to the field. You know, the field has taken the NIA’s Research Framework and has added to it and kind of used it in ways that best benefit their work. Certainly, kudos to the health disparities research community that have really taken and lifted that framework for their use.
Chin: And so diversity is so important in many ways. Why is it scientifically important to research, especially Alzheimer’s disease research?
Hill: Yeah I’ll tell you. I’ll take a step back and say in terms of dementia, we know Alzheimer's causes 60-80% of dementia, but they are different types of dementia. So there's a diversity among dementia that's really important to consider. There’s vascular dementia, mixed dementia, frontotemporal dementia, lewy body dementia. So we have to really take a critical look at differences among or in the dementia space and how that relates to a prevalence among various populations. When we say African Americans are two times more likely and Hispanic Latinos one and a half times more likely to have Alzheimer's or another dementia. It's really important to understand the diversity among dementia and then it's important to understand diverse perspectives and the pathways to risk. In some people there is a genetic risk. In others we've got to understand the life course perspective and that is the cumulative effects of stress over the life course, how that relates to coping behaviors that threatens their cardiovascular health, and over time how that you know really puts them at risk for Alzheimer's or another dementia like vascular dementia, right? It's important that we keep these diverse perspectives in mind and it's important that once we understand them that we include them in our research designs, in our community outreach to understand how best to engage these communities, right? It's really important that we do that. All of that, Nate, is to really realize our dream of equity. That’s being able to provide resources, whether they're research findings, resources like education and awareness, or information about how to call a dementia care specialist or a neurologist – how to get that information to people, resources to people in a way that they can best use them, right? Tailoring for communities. I certainly think that DEI – diversity, equity, and inclusion – is fundamental and critical to the dementia science space as we speak today.
Chin: And that perspective that you're talking about, that includes our scientists themselves and our research staff and our clinicians and all the other people who may interact with a diverse participant or patient population.
Hill: Absolutely, absolutely. We know that people are more willing to engage in a clinical trial or participate in a study, or even seek care and seek care in a way where they feel like they belong. Belonging is so important here, when they see someone from their community or that looks like them. We certainly have to do all that we can to develop these bridges and pathways to historically Black colleges and universities, HBCUs, Hispanic serving institutions, tribal colleges and universities. We've got to really partner with these institutions. There are rigorous researchers at these institutions doing work in the dementia science space, so not only for recruitment and engagement and inclusion but to really include these scientists in the types of research that we're conducting because that's a really important way of including diverse perspectives in dementia science as we move forward.
Chin: Are we at a place where the diversity that's needed is actually reflected in the scientific research and studies being conducted, particularly in the dementia space?
Hill: No, we are not at a place. We need to do so much more in terms of engaging underrepresented scientists into this space. We need to do more in training more representative scientists, and that will take engaging students at the college and maybe even high school levels. So we have to do more there. We certainly need to do more with including individuals in clinical research. I've said this many times before – we've talked about this – but 95% of clinical trial participants in Alzheimer's research, in other disease areas research, you know are white. Certainly we've got to pay close attention to things like a Tuskegee Syphilis Study and Henrietta Lacks case in Baltimore, but that doesn't explain all of the the variants here. Once we get people the information about the protections that are in place and we really engage to understand the stigma that's associated with participating in a trial, then we have to move towards understanding other barriers that keep underrepresented people from participating, like the time of day that investigators are asking people to participate in these trials or the transportation issues – people are working various jobs and they may not have time to come over to a big university, academic center, a health setting to participate in a trial. Doing things like taking the trial to people in the community could have a very lasting impact but, you know, there are challenges with that as well. So this inclusion science, Nate, I think is really important. I heard this phrase from my good colleague, Dr. Luis Medina at the University of Houston, and that is evaluating from a local perspective those barriers and also those things that could accelerate participation in trials. We've got to really put some resources so that these investigators can conduct these types of analyses locally, maybe with the Alzheimer's Disease Research Centers, other academic institutions, so that we can learn how best to be more inclusive in dementia science.
Chin: How does AAIC help support and promote diversity in Alzheimer's disease and related dementia research?
Hill: I tell you, AAIC is the largest scientific conference focused on Alzheimer's and all other dementia, so just bringing you know these scientists together to exchange ideas is just a tremendous opportunity for diversity, equity, and inclusion. There's a focus on early career investigators. Certainly the Alzheimer's Association is focused on being inclusive of diverse perspectives there. AAIC is just a wonderful platform for investigators to come together and also to network, to be able to present an idea and have a senior investigator sitting in the audience to hear how that might link with some of the things going on in their research program, or colleagues get together and they move ideas forward. You know, the magic happens when we're able to put the very best and brightest. I think scientists certainly represent the best and brightest together to understand how to tackle some of these very difficult research questions. The work happens in between conferences and we get to hear about how it all comes together each year. So I'm really excited about the discussions and the presentations that will take place this year in San Diego. I'm counting the days until I'm able to be there.
Chin: Are there presentations at AAIC this year that will delve into this topic of diversity in Alzheimer's disease research?
Hill: There’s one panel I'm really looking forward to and I had a chance to to work on developing the funding opportunity announcement while I was with the NIA. It's focused – it's an R24. It’s focused on evaluating these barriers to participating in aging research broadly with a focus on Alzheimer's and related dementia research specifically. It's called “Examining Diversity Recruitment and Retention in Aging Research.” These grantees, many of them are in year two of their funding cycle and I'm really excited to hear about some of the findings that they've generated from their support from NIA around this inclusive inclusion science work. I'm also interested in a really exciting panel around developing and conducting culturally sensitive research among the underdeserved population of LGBTQ older adults with cognitive impairment. So that'll be there. It's “Innovations in Empowerment and Action,” IDEA panels. That's gonna be great. Then finally the RCMAR, which has been around for so long. I tell you, Dr. James S Jackson from the University of Michigan, such a champion of the RCMAR. We lost Dr. Jackson last year. So I’m really excited to hear the new findings from the young investigators and experts from the RCMAR centers around contextual influences on racial and ethnic differences in Alzheimer's disease.
Chin: Well with that, thank you, Dr Hill, for being on Dementia Matters for this special series with the Alzheimer's Association International Conference. We look forward to having you back on again.
Hill: I can't wait and I'll see everyone at AAIC. Take good care.
Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at firstname.lastname@example.org. Thanks for listening.