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

Transcript

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: A familiar face, or voice I should say, is joining us today in Dementia Matters. Dr. Carl Hill is the chief diversity, equity, and inclusion officer for the Alzheimer's Association and he previously served as the director of the Office of Special Populations at the National Institutes of Aging, NIA. In 2019, Dr. Hill was a guest on Dementia Matters and talked with me about improving healthcare access to elders from diverse racial, ethnic, and socioeconomic backgrounds. In this episode, we will continue that discussion and talk more about the importance of diversity in Alzheimer's disease research. Welcome back to Dementia Matters, Dr. Hill.

Dr. Carl Hill: It's so great to be here with you, Dr. Chin.

Chin: It's okay if I call you Carl?

Hill: Please do, please do.

Chin: All right, so Carl, I think it's important we start with definitions because these topics that we're gonna talk about are complex and, at times, can be charged. I'm going to ask you to please define for us – in your own terms – diversity, equity, equality, and an underrepresented group.

Hill: Yeah. I tell you, you're so right Dr. Chin. This is a time when we're really considering social justice. It's just important to be clear on what we're all pursuing here. In my mind, when we think of diversity, I think of a numerical representation of differences or different perspectives, characteristics, or beliefs. What immediately comes to mind, from a diversity lens, is groups of people who are disproportionately affected or underserved or underrepresented. Who's at the table and who's not? That's how I think of diversity. Moving on to inclusion; is this authentic? The keyword here is authentic. I think an authentic invitation or a way to bring people to the table, that's being intentional in identifying those individuals who are disproportionately affected, underrepresented, and understudied, and doing something about it in an authentic way. That leads us to equity and equality. Equality is using that authentic intention and being sure that everyone gets the same invitation, or we approach everyone's risk pathway with the same importance. Or we can be equitable about it. This is why I really think we have an opportunity here. That is, to tailor the ways that we might invite underrepresented communities to participate in the clinical trial or to tailor our outreach to communities that are underserved and disproportionately affected. I think the equity perspective is really taking the time to assess how to get resources or invitations, recruitment, et cetera, to communities in a way that they can be best received, really thinking about sociocultural factors that could serve as enablers or serve as barriers and really addressing that type of equity by understanding those opportunities.

Chin: And then how do you define, especially in our field of Alzheimer's disease and related diseases, underrepresented groups? It seems like a very broad term.

Hill: It is broad. It is broad. You know, when we think of our opportunity with the Alzheimer's Association, we have over 70 chapters all around the country, in major urban areas and in rural areas. We have a real opportunity to get resources to communities. When we think about health disparities or communities that are disproportionately affected, there are ways to think about addressing these disparities. There's a theme or a term, resources, that could represent opportunities and tangible information that is contextual and that's also delivered at the individual level as well. The Alzheimer's Association – we have a free nationwide helpline, so being sure that all communities know about the helpline that is staffed by masters-level clinicians and specialists delivered in over 200 languages. We conduct face-to-face and virtual support groups. We have an online community forum. We have support for caregivers. We have an online tool to help families facing a diagnosis. We have so many resources that we can deliver. Underrepresented for us means those communities that are taking advantage of our resources, or better put, that we aren't engaging enough to deliver our resources and deliver on our mission and leading the way to end Alzheimer's and all other dementia by accelerating research, driving risk reduction and maximizing care and support. So underrepresented from the Association's perspective is those communities that traditionally, historically, we have not served well, but also underrepresented populations can include those that aren't being recruited into clinical trials. That is a very important part of information that we like to deliver to communities. Understanding who's underrepresented in these clinical trials is so important, to have representation in clinical trials, because that's the way, as you know, Dr. Chin, that we determine that treatments are safe and effective in all communities, particularly those that are disproportionately affected, right? The equity lens here is to recruit families and individuals in these trials with some knowledge of the sociocultural factors that can serve as enablers and potential barriers, taking a real community-level approach to understand these so that their recruitment has a chance to be successful. I gave an example. We have a community theater. It's called Unforgettable, and we partnered with Garrett Davis Productions. This is an opportunity for, in this case, Black African Americans to come out and get dressed up. It's open to anyone, but the cast is primarily Black or African American. In this community theater, people are entertained. They are providing information and discussion around the importance of participating in clinical trials and the information is conveyed in a different way. I think there's some merit in giving lectures and talks and delivering any information that way, but this infotainment or edutainment is a way to get the word out in a way that could be culturally responsive to some people.

Chin: Well, so then Carl, using these definitions that you've so nicely laid out for us, how is the Alzheimer's disease field doing overall with diversity, equity, and inclusion, particularly when it comes to participants in studies like the clinical trials you just mentioned, but also scientists and staff conducting those studies?

Hill: We have so much work to do, Dr. Chin. I understand that we're at a place where we're all coming to grips with level-setting on the importance of these concepts, but we know African Americans are two times more likely to have Alzheimer's or another dementia, compared to whites. Hispanic Latinos, also, one and a half times more likely. There's such a critical shortage of representation in clinical trials among these populations that are disproportionately affected. So that puts us in an ethical justice place where the people who are more likely to have Alzheimer's or another dementia are not being recruited into the studies. That really motivates an urgency to do more. There has been an addition of funding at the NIH-level. The Alzheimer's Association has advocated for more research funding so there's opportunity to do more. Now we're really depending on researchers and policymakers, community engagement specialists to all come together to really think of what inclusion can look like. What does recruitment science look like? What does health equity really look like from the Alzheimer's Association in getting these resources to the communities who need it most? So much work to do, more resources to do it, it's just aligning on what needs to be done. I’ll give you an example. The Alzheimer's Association is advocating for the ENACT Act, and that's Equity in Neuroscience and Clinical Trials Act. Congress representatives are really considering whether they would support this act. It would provide resources and money to the Alzheimer's Disease Research Centers to really hone in on their community engagement, to taking money and evaluating what works for better representation in clinical trials, maybe even prioritizing neurologists and other scientists that conduct this work that come from these communities, really thinking about the training of these underrepresented scientists in this area. Just one example, but the Alzheimer's Disease Research Center network is, in my opinion, one of the best products of the increased funding at the federal level for Alzheimer's research, really leveraging that network of research centers around the country, getting them resources so that they can do better engagement and really understand how best to be inclusive in an equitable way for more representative Alzheimer's and dementia science that may also address disparities that we see in dementia.

Chin: So you've mentioned resources and funding and then having a network to improve diversity, equity, inclusion. Are there other barriers that we know about that are getting in the way of us getting to true representation?

Hill: Well, the sense of belonging is so important. At the Alzheimer's Association, we have such a focus on equity. It is a part of every pillar of our organization. The next step is getting everyone to understand that they have agency and to give people confidence to do the work, right? We think about structural racism. We know historically there are factors that have just kept African Americans and Hispanic, Latinos, American Indian, and Alaska Natives from being trained in all sorts of fields, right? We do all that we can to recruit and to have better representation among our staff at the Alzheimer's Association and our volunteers. It is a real challenge. The other path we take is to be sure that everyone's trained in working this way and understanding their unconscious biases or being able to discuss these terms – diversity, equity, and inclusion – with confidence. One barrier that we're really considering now is giving people the agency and confidence to do the work, to do the equity work. That is an opportunity for us, because as an example, I tell you, we have staff and volunteers who are supportive but you wouldn't know so because maybe they remain quiet and respectful in times that we want them to become leaders and to feel confident about being leaders in helping us getting those resources to communities that need it most. That's a real opportunity. It's inclusion and focusing on belonging and delivering confidence and agency to our staff and volunteers to really help with our DEI momentum. 

Chin: When you talk about agency and confidence and belonging, that can also apply to the communities that we're trying to engage with and empowering them to speak up and interact with and collaborate with researchers. That leads to my next question because I hear a lot about community-based participatory research. It's a mouthful, but what is this from your perspective, and how important is it in this space of DEI in Alzheimer's disease research?

Hill: I think community-based participatory research (CBPR) is really important here. It represents a number of strategies to engage communities, to empower communities, to join the effort, various ways that CBPR has been used in the public health literature. It really focuses, Dr. Chin, on engagement and maximizing trust. I always say trust can't be quantified. There's not a time on building trust. It is a process. Community-based participatory research really prioritizes building participatory teams, representatives from various parts of a community – not all researchers, not all politicians or leaders in any one particular sector, but those that represent the community and essentially want what's best for the community. As I've seen it, the best CBPR really acknowledges history. There may be historical factors that have led to, for example, why there is not adequate representation in clinical trials. Or from the Alzheimer's Association, why we have not been able to serve various communities in ways that we would like to. Really acknowledging history and then finding a place of trust, identifying resources that could be helpful, having this participatory team review those resources and making sure that they are culturally appropriate and relevant, maybe even training community members to deliver the resources. There's a number of ways to use CBPR. I think that the take home here, Dr. Chin, is that it's not a one size fits all. The term, the word “participatory” means that the effort is informed by the community, it's informed by the stakeholders and that may look different. That may look different in Milwaukee than how it looks in Waukesha, right? Really acknowledging that those differences are what could eventually make the project positive and could make it work, quite frankly, right? So really identifying those factors that could be helpful in doing that with a team-based participatory approach. 

Chin: All right, Carl, so I'm going to ask you a question now that's going to pull at you from your current position with the Alzheimer's Association, with your former position working with the NIA, and that's because it's going to take more effort, more intention, more authenticity to reach populations that have historically not been involved in research. Like you just said, there's not a timeframe to that. There is a lot of effort to build trust, to build transparency. However, grant cycles are five years, so I wonder how do researchers build this? How do researchers engage with communities knowing that they have at most five years of funding? And that seems like a very – it seems like a big barrier to the research side of it, so I'm wondering what you think is a way, or have been other ways that have been successful in actually reaching under-reached populations?

Hill: I do believe that the NIH and CDC, they do have mechanisms that allow for longer grant periods, grant cycles. At the Alzheimer's Association, we would advocate for those opportunities where researchers can really develop community engagement teams and do the work of establishing trust. There are opportunities there, Dr. Chin, but over and beyond that, there's other funding. There's funding at the state-level, at the city-level, with organizations like the Alzheimer's Association to help with establishing this type of community-based participatory engagement. My answer would be to diversify, to really think of other means of funding projects if we take it from the researchers' perspective, but also encouraging project officials at NIH and at CDC to understand that this work really demands the time that it takes to develop trust. And that, you don't just develop trust, Dr. Chin, and it's there. You move on to collecting data. It's an ongoing process. It's a way of providing resources to communities that may not even be related to your research project. I do think that we have to think of community engagement as an ongoing concurrent activity to research projects. I've seen several during my time at NIH, several academic institutions that had pretty rigorous community engagement divisions. They were always out in the community with employment information, health-related information, bringing research results back to the community. Having a real stake in the community to not only develop but maintain trust is really important in this way. 

Chin: Yeah, thank you for answering that, Carl. I think that's so critical that this is not a single intervention or a five-year intervention. This is a long-term process of true collaboration and engagement with people. I'm glad to know that there are; you're right, there are other ways of getting that funding so that researchers can do the work that's needed and truly connect with the people that we're trying to serve. I want to pivot here and ask a little bit more about the diversity and the research looking at diversity specifically. The reason I ask that is because more and more we talk about Alzheimer's disease as this biological process that's happening in the brain, and humans in general are over 99% genetically similar. Why does diversity matter in Alzheimer's disease if we're looking at the biology of it?

Hill: So important. I tell you, and this is going back, as you said, to the first pathways of risk. I think of this question as being really focused on dementia. Certainly Alzheimer's is the most common form or cause of dementia, but there are other causes that link to frontotemporal dementia, Lewy body dementia, vascular dementia, which is quite compelling from my perspective because it calls into the life course perspective. If cardiovascular health is important, many cardiovascular factors are important for the development of vascular dementia, then we start thinking of stress and coping or the way people live and their access to healthy foods and opportunities for physical activity. This Life Course approach is so important when we think of this diversity in pathways to risk, really important to think of it in that way, and it calls into racial discrimination. We had some really good presentations during our Alzheimer's Association International Conference (AAIC) just this past year that took a look at perceptions of discrimination and memory decline and how maybe stress plays a role in that. I think, yes, humans are 99.9% genetically similar, but people live different lives and people have different histories in this country. People perceive stress and cope with stress differently, and people endure different stressors like racial discrimination that others don't. Understanding all of that from a Life Course perspective and how that equates to risk for Alzheimer's and other dementia is very important for health disparities research.

Chin: So Carl, is it safe for me to say then when you speak of this Life Course and stressors, as an example, and experiences with racism, as an example, are you speaking then to this term of social determinants of health – the factors beyond this environment, how you were raised, your education, how you live, how you pray, how you eat? Are you speaking to that component then?

Hill: Absolutely, Dr. Chin. During my time at the National Institute on Aging, we really took some time to carve out what we thought were levels of analyses with these social determinants of health, if you will. Knowing that there are many biological factors that relate to aging, or specifically for Alzheimer's and dementia – plaques and tangles, genetic risk, amyloid and tau – those are the biological factors that are most relevant here. Moving almost to the left and thinking of individual-level factors that could really influence those biological factors, that is, maybe health behavior or choices that people make with their nutrition could influence their cardiovascular health, their lack of physical activity. So many individual-level health behaviors and decisions that people make are important, but the social determinants of health model really contextualizes behavior. This has always been so intriguing to me, and that is that there are resources, opportunities, stressors that influence the decisions that people make that ultimately can affect these biological outcomes. There's culture. We talked about norms and values or religion, all the things that people believe in. They believe in these factors to sustain themselves as part of their community, as part of their culture. These are strong beliefs and norms that could influence their health behaviors, right? So there's a sociocultural part of this. Then there's the environment, right? So where people live and just their sheer access to resources, their access to quality healthcare, their access to income and information about employment, and sometimes it's just where people live. When we think about the United States, people have endured redlining and housing discrimination, so people live in these places where they might endure risk related to asthma and cardiovascular determinants. Thinking of social determinants of health has led me to ponder context and that's environmental factors, how they link to culture, norms and beliefs, and we know it's so important to belong, right? Belonging means that for many people, we adopt cultural beliefs of any particular group. How does that all come together to play out in ways where people enact certain behaviors and help-seeking behaviors – going to the doctor, or nutrition, physical activity, all these health behaviors – and then ultimately how that gets under the skin, if you will, and influences the amyloid and plaque and neurodegeneration that we know characterizes Alzheimer's and other dementias. That pathway in my mind represents the social determinants of health.

Chin: In the research on social determinants of health, as we identify these pathways, you know, what are your key takeaways? What are places where we need more intervention? What is that intervention? How can we help the people that we're studying?

Hill: Well, we need multi-level interventions. This is really the tough part because I do believe that individuals can take information and use that information to protect their health. I still believe that I'm able to receive an invitation to go in and get some information about caregiving and I would utilize that. But we've got to acknowledge that not everyone has the same opportunities in the same ways, and many of these interventions should focus on policy-level change, providing resources, for example, for more health disparities research at the NIH and at the CDC, or even more regulation for having more representation in clinical trials. Using this example, yes, certainly, for sure. We'd like to knock on doors and ask people to participate in clinical trials, but because of some of the history, we know that people may not trust that participation or they just may not have the time during the day to participate, you know, or the clinical trial is being run at an academic center across town and people just don't have the means to get over there, right? Understanding that is so important. Maybe in that example, intervening at the policy-level to provide better resources so that Alzheimer's disease research centers can do the upstream work in understanding the best ways to get underrepresented communities in these trials, right? So I think the interventions must be multi-level in acknowledging and maybe even prioritizing those social factors, those contextual factors, those environmental factors that could be fundamental for addressing the disparities or lack of representation that we see in this area.

Chin: Well, I'm glad you mentioned clinical trials because I want to end our discussion today with a fairly controversial topic of drug therapies. So the FDA approved a particular drug that was shown to be possibly effective. The science now seems to be that it could actually be effective. However, one of the big complaints was that it did not represent the United States population and that there was a very small percentage of people of color or under-resourced environments. Different groups came out either for or against it and it really just depended on where you were, and I'd like to ask you for your take on this. I would also like you to answer, or try to answer, a question of should we be mandating true representation in a clinical therapeutic study before that study can actually begin or publish their results?

Hill: Yes, really good question, Dr. Chin. Yes, I think we should be regulating our representation in trials. I think the FDA should be considering this representation as they provide approval for these trials. That's very important for that question. This was a really interesting time in our field. I really thought of it as a perspective based on the organization that you represent or how you work in this field. I thought of my time at NIH. Our real commitment to the peer review process, Dr. Chin, that one particular treatment, aducanumab, knowing very little support for that particular treatment with the FDA peer review process really had me think about this in a particular way. Since I've been with the Alzheimer's Association, I have really come to grasp the patient perspective. Absolutely there was little representation in this trial, which is disappointing, and it's disappointing for the reasons that we mentioned before – safety and efficacy, and not being to assure communities of both of those because of the very low representation in the trial – but the equity perspective is access. When CMS decided to not cover this particular treatment, I thought it went against the equity perspective. It does not mean that this particular treatment is for everyone. Talking to your doctor, the ultimate decision may be because of the lack of representation, this is not a good treatment for you and your family, right? Cost should not be a barrier to accessing FDA-approved treatments. I think the equity perspective is to have the opportunity to talk about this with your doctor and to determine – and your family quite frankly – to determine whether it's right for you and if that determination is made, cost should not be the barrier.

Chin: Well, in that, thank you, Hill for being on this very interesting podcast on DEI, diversity, equity, and inclusion.

Hill: Thank you so much, Dr. Chin.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. 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 at the University of Wisconsin--Madison. 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 Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Haoming Meng. 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, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.