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

Headshot of Lisa Barnes, PhD
Lisa Barnes, PhD

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

Show Notes

Learn more information about the NACC and watch the presentation recordings from the Spring 2023 ADRC Meeting on their website.

Watch Dr. Barnes’ presentation at the Fall 2022 ADRC Meeting, “Social Determinants of Health and Health Equity.”

Read more about the study Dr. Barnes mentions at 16:36, “Gender, Racial, and Ethnic Inequities in Receipt of Multiple National Institutes of Health Research Project Grants,” for free through JAMA Network and through the article, “Scientists with multiple NIH grants are overwhelmingly male and white,” published by Science.

Read more about the study Dr. Barnes mentions at 16:40, “Systemic racial disparities in funding rates at the National Science Foundation,” for free through the National Library of Medicine. 

Learn more about Dr. Barnes on Rush University’s website.

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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 Dementia Matters. Today I'm joined by Dr. Lisa Barnes. Dr. Barnes is a cognitive neuropsychologist at the Rush Alzheimer's Disease Center in Chicago and the Alla V. and Solomon Jesmer professor of Gerontology and Geriatric Medicine at Rush University. Her research focuses on the epidemiology of aging and racial differences in chronic diseases of aging. As part of the National Alzheimer's Coordinating Center's fall Alzheimer's Disease Research Center meeting, Dr. Barnes gave a talk on the social determinants of health and health equity. Dr. Barnes, welcome to Dementia Matters

Dr. Lisa Barnes: Thank you. Good morning, Nate. 

Chin: So to start, how did you get interested in this field? And really, how has it evolved over your career thus far? 

Barnes: Yeah. Well, since I was probably a young child, I've always had an interest in the brain, in memory. I did my postdoc, actually my PhD and my postdoc in biopsychology and cognitive neuroscience. But after my postdoc, I decided or realized that I wanted to have a more applied perspective to my research, so I saw this position in Chicago at Rush to study Alzheimer's disease. Of course, you know, the hallmark feature of Alzheimer's is loss of memory, so it really fit in with what my interest was, but it was a little bit different from what I had been trained in, the more experimental methodology, because it was more epidemiology based. But I interviewed for the position. I loved the place, the people and I decided I'm just going to jump in and do it. Over time, it has really evolved because when I first came here, I was really, really interested in racial differences and like understanding risk factors for Alzheimer's. But over time, I've developed my own cohort study of African-Americans, and I really started to appreciate or really understand the importance of within race, heterogeneity and understanding how African-Americans change over time, what are some risk factors that might be uniquely relevant to that population? Over time, I sort of have honed my interest more into understanding the social conditions around race and racial differences are more focused on, I guess, the social or psychosocial variables that impact people as they age. 

Chin: I mean, that's fascinating to see the evolution of it. I'm also wondering, as a child, what you were specifically interested in when you think about cognition. Like, I can't imagine a child being excited about the brain. Was there something in particular? 

Barnes: I mean, I think it was more so memory. When I say child, I'm not talking about like running around in diapers, you know, but I had a series of experiences in high school and undergrad where I was able to work at different labs, and one seminal experience that sort of changed the trajectory of my entire life was I got to work with the famous patient, H.M. I don't know if you've heard of him, but he was the patient who had this intractable epilepsy and they removed both sides of his hippocampus. Well, I did an internship at MIT with his neuropsychologist at the time, who was Suzanne Corkin, and just working with him for like two weeks in the summer, it completely changed my life, and I was like, “Oh yeah, this is what I want to do. I want to be a neuropsychologist.”

Chin: That's incredible. For our listeners, if you read any book, any popular media book on cognition and memory, everyone tells the story of H.M. This is a very, very famous case. I did not know that you had that experience. That's incredible. I can see how that's pivotal in your career development. 

Barnes: At the time, I didn't know how famous he was and how he really changed the field. I was just like, “Oh, wow, a nice internship experience.” And it wasn't until many years later that I was like, “Wow, my God. This is really something that I was able to do this.”

Chin: That's so great, but it's nice to see that something so valuable early on really helped shaped your career. 

Barnes: Yeah.

Chin: So part of this career was presented at NACC, the conference this past fall, and you spoke on social determinants of health and health equity. Before we get into your talk more in detail, If we could start by having you define those terms or concepts really for us, particularly how they are relevant in this Alzheimer's disease or just dementia space. 

Barnes: Okay. That's a great question. So in the talk, it was focused on social determinants, right? But I think we have to take a step back to really define what we mean by health disparities, because that is really what drives this whole search for social determinants. So health disparities, that's a difference in health that's closely linked with social or economic disadvantage, right? If it's an unnecessary difference or an avoidable difference or an unjust difference, then we call it a health disparity. In the talk, I showed this picture, this diagram, to try to illustrate the difference between equality, inequality and equity, right? Because we're trying to get rid of health disparities, really, and we're trying to move towards health equity. I'm going to describe the picture that I showed. It's a picture of two people standing underneath an apple tree, right? The the apple tree is sort of slanted to one side. There's a lot of apples on one side, and there's maybe one or two apples on the other side. The two people were standing under the tree, so inequality is, you know, more apples are like kind of falling down on one side, so one person is able to get lots of apples and the other person is like, “Oh, my gosh, where are the apples?” So we talk about moving to equality. That would be giving both people a ladder that's the same size so they can both reach the tree and get the apples, right? But remember, the apples are skewed to the side, so each person has the same size ladder, but only that one person who's under the ladder that's skewed, they're still getting lots of apples. The other person is like, “OK, I still don't have any apples, even though I have this ladder.” So equity is giving people what they need, when they need it, and the amount that they need. You give the guy or whatever, the person, a taller ladder. Now that they are a little bit taller and they're able to reach the leaves of the tree, but still because there's so few apples on that side, it's not really helping. It's closer, but it's not helping. So what we really need to think about is justice, social justice. That would be taking that tree and making it straight so the apples are distributed equally across both sides, so now, everybody can reach all the apples and we could see all the resources, all the opportunities. It's really fixing the system so that everybody has equal access. That's what I was trying to illustrate when I was trying to understand the difference between inequality, equality, equity and justice. That make sense? 

Chin: Perfect sense. I thought it was a great figure. I'm glad you verbally illustrated that for us. With that, then, how do the social determinants of health fit into that paradigm or that concept? 

Barnes: Yeah. So the social determinants fit in because we've known for a long time that health, including brain health, is not just biology, right? It is influenced by lots of things outside of biology. So social determinants are the social conditions into which a person is born, they live, work, play, age, the social context that surrounds a person. This could be things like access to healthy food or access to affordable housing, you know, access to safe neighborhoods, access to good education. All of these social things, social factors in our lives, they play a part in our health and in our brain health, so that's why it's important to understand them, especially when it comes to Alzheimer's. 

Chin: One of the things I enjoyed about your presentation, you had said, listen, we all have our social determinants of health. This isn't just about those with inequities or inequalities. We all are born into a context and we can understand that. We just have to look for those variables. 

Barnes: Right. Have to be able to measure them. 

Chin: So with all of that in mind then, when you think about health disparities or health inequities, what are the drivers of these? Why are these disparities happening in today's time? 

Barnes: Well, in my presentation, I had this picture of like an elephant hidden behind some lines to try to illustrate that the thing that we don't like to talk about. I think the key driver to these health inequities is racism, structural racism. That's the presence of social structures, policies, norms or practices that assign value and systematically constrain opportunities, right? I think the lack of opportunity across the life course is really what is driving these disparities, so people don't have access to have good education, quality education. They don't have access to having good paying jobs, those kinds of things. That's all shaped by structural racism, so I think that's the key driver. 

Chin: And that, of course, is in the context when we think about race, but your slide also showed homophobia and sexism, and there's many different biases and prejudices that can help form those drivers. 

Barnes: Exactly. There's all kinds of systems of oppression, right? Ableism, ageism, all kinds of isms, all of those things. If you are able to group people together based on how they look or who they love or whatever the ism is, and then you strip away their opportunities, that is a form of structural, I keep saying structural racism, but it's more than racism, like you say, right? It's any of these isms that keep people away from opportunities. 

Chin: And you mentioned then that a consequence of these isms, in particular racism, though, is this lack of trust in the system, in health care in particular. So how does that impact what you're trying to do in research and bringing people in to understand aging and dementia? 

Barnes: We've known for a long time that trust is a big factor when it comes to doing research with underrepresented communities, and it's a long history of, like, abuse, in research. There are many groups of people who have been misused and abused in the face of science, and even though some of this happened a long time ago, some of it still continues. But even more importantly, people have memories of what happened. This oral tradition, people talk about it. So it's handed down over generations. But I showed a slide in my presentation of data that the Alzheimer's Association gathered. They did these focus groups, and I pointed out two things in particular that I thought were really key to us understanding why trust is so important, so they did focus groups with different demographic backgrounds. They had white Americans, Hispanic Americans, Black Americans, Native Americans and Asian Americans, and they found that black Americans were most likely to believe that research is biased against people of color, and they were least likely to believe or trust that an Alzheimer's cure would be shared equally, regardless of race, color, or ethnicity. What that means for us as researchers is that we don't have the trust of the people who are most impacted by this disease, right? It's not because they don't trust people or they just have some inherent problems. It's based on history. It's based on the legacy of things that have been done to them in the face of research, so we as researchers have to work extra hard to earn their trust. We have to become more trustworthy and do what we say we're going to do. explain what we're doing, why it's important, and really have them as partners. I don’t want us to ever feel like we're blaming people and say, “Oh, they just don't trust.” They're just, you know, they lack trust as a people. That's not the message. The message is that we as researchers have to become more trustworthy and show people why this is important and how they can be partners with us. 

Chin: That answer there is actually part of an answer to my next question. But I'm going to ask you to expand. That's really what do we do now? How does the research field address the trust gap, the health inequities and disparities? You had mentioned in your presentation this idea of incomplete narratives and too few narrators. I think that's a really important thing. It's very catchy as well, of course. But can you can you expand on that for us? 

Barnes: Yes. So I think and I will credit the NIA leadership and the Alzheimer's Centers for even wanting to take this step. But my point was when I say too few narrators and too few narratives. For so long, our understanding of this disease has been based on research done predominantly with one population, right? Almost everything we know about Alzheimer's has been based on studies of older white adults, because that has been the historically included population, right, in the studies, for all the reasons we've already talked about. Because we're getting just this one perspective from one population, that's one narrative that we have. There are so many other narratives out there, people with their lived experience that we're not capturing, we're not understanding because they're not in our research. We have just, you know, and I'm not saying that because we're studying white people, there's only one narrative, but it is a homogeneous narrative, right? When you only have one population. As you get more people included in the research, you naturally will start to understand that there are other factors involved, right? So you will expand your story, expand the factors that you're looking at when you include other populations, increasing our narrative. When I say too few narrators. If you look at the data from NIH, most people who are getting these R01 level grants are white investigators. Actually a study just came out that even at NSF, it's the same story. So it's not just across NIH, across all these funding agencies, the predominant group of people that are getting these grants to do research are people coming from the white population. Again, going back to systemic or structural racism. So there's too few narrators because if you look at the data that comes from NIH and from NSF, a recently published study, most of the R01 level funding is going to white investigators, so you're really not getting people who have a shared lived experience as part of the research pool or the researcher's pool, right? So we need to have people who share a lived experience, who reflect the communities that we want to be a part of. They need to be the ones also doing the research. So you have too few narratives and too few narrators. Our hope through the Alzheimer's Centers is that we can rectify that by getting more people of color to be a part of our studies and training a new generation of researchers who come from these communities and can really bring more narratives to the table. 

Chin: For our listeners, when Dr. Barnes says R01, that's a big funded grant. That's usually a million dollar or more funded grant over a year, and that's the important one, right? 

Barnes: Right.

Chin: All of them are important, but that one in particular is one that provides a lot of data for people to understand whatever their research question is. 

Barnes: Exactly. It gives you a huge infrastructure so you can do things like I'm doing, building a cohort and following them for many years. 

Chin: Right. Well, I want to transition then to a little bit more about those social determinants of health, because you spoke about five key ones. You did acknowledge that there's many different ways of expressing these, but you in particular listed five. Can you describe those for our listeners and kind of highlight the impact of some of these that has already been shown in research when it comes to aging and dementia? 

Barnes: Yeah. So I based my presentation off of the Social Determinants of Health from the Healthy People 2030. So in the Healthy People 2030, they talk about five main categories. There is education access and quality. Number two is healthcare access and quality. Number three is economic stability. Number four is neighborhood and built environment, and number five is social and community context. To sort of break that down a little bit more, when we think about economic stability, it can be anything ranging from employment, income, debt, expenses, all of those kinds of things. When we think about the health care access category, that includes a wide range of things: health coverage, quality of care, cultural competency. Education is pretty obvious, right? It's years of education, but it's also literacy. It's early childhood education, you know. Access to good quality education. The neighborhood and built environment are things like housing, transportation, safety, all the things that are sort of the broader context in which people live. The final one was community or social and community context. That includes things like stress, social integration, community engagement. What I did in the presentation after describing these five categories, I tried to pull out some data showing how these particular variables are associated with brain health, and there's a lot of research already out there showing that these things are important. For example, I showed one study that used data from a large database called Health ABC, where they showed that lower socioeconomic status, which they defined as less than high school education and making less than $10,000 a year. People who fell into that category tended to have a higher risk of dementia. Another study from WHICAP, which is a large database out of New York, they found that older adults who were illiterate – who couldn't read or had very low literacy levels and less than four years of education – were almost three times as likely to have dementia and twice as likely to progress to dementia over time compared to literate participants. So here you have these two, that's economic stability and education. Both of these are shown to be related to risk of dementia. I also talked about stress, right? When we think about the community and social context category, I show one study from Kaiser where midlife stressors, people who reported having these stressors in their midlife, they had a higher risk of dementia in late life, and in my own work, I have looked at things like experiences of discrimination, everyday discrimination, unfair treatment that people talk about happening in their lives on a daily basis. That's related to worse performance on the memory test that we use to diagnose Alzheimer's. And going to school in early life in a segregated South. People who attended schools that were actually desegregated also had worse performance. I think the last one I presented was people who talked about having unpredictable lives, very stressful lives. They had a faster rate of cognitive decline over time. So all of these social determinants have been shown to be powerful predictors of poor brain health in late life, either increasing your risk of Alzheimer's or being associated with worse performance on the test that we use to make a diagnosis. 

Chin: Now that you've highlighted this and your work is showing this powerful impact of the social determinants. What is being done at the research level? What are our Alzheimer's disease research centers doing to collect this data to address these issues? 

Barnes: Great question. It's not what they are doing currently, it's really what I was trying to… It was a call to action, right? A call to action for people to start doing these things. Because what I did show in the data was that our current database from the centers are about 80% white participants, right? We have very few people represented in our centers from other races and ethnicities. We have like 80% white, it's about 14% black, 9% Hispanic and the other groups are negligible, right? So one thing that I hope that we will start to do is to get more people from these other groups to be a part of the center program, so getting more participants from our underrepresented groups, right? That is one key thing that we have to do, because, again, we have too few people coming from these these different groups. We're going to have one single narrative coming from the white population. That's one thing, increasing our recruitment. The other thing that I was trying to get people to do is to expand the data that we're collecting in our data forms, so the whole purpose of the presentation was to highlight social determinants. We had a work group that was led by myself and another researcher at Wisconsin, Dr. Zuelsdorff. We had a group come together and we created a new module of social determinants of health. This is like a five to 10 minute battery that can be given to all of the participants, regardless of their race and ethnicity, that asks about the different categories that I outlined earlier. So we have questions on transportation, questions on financial stability, questions on stress, questions about community context. All of these things we hope will give us more information about the social context in which people live. The third thing that hopefully people are doing is diversifying the workforce, because like I said, there's so few narrators. How can we grow this pipeline of people interested in health disparities and who come from these backgrounds? I think together, those three things are what the calls to action that I was trying to get people to kind of galvanize and say, “Yeah, let's do this as a center.”

Chin: To end, you just spoke about the call of action for our Alzheimer's disease research centers. But what about what we as a society could do to potentially help close the gaps that we see in the ways that these social determinants of health really affect different people in a different way? Is there something for our other researchers who are listening that aren't in this space that don't work at the ADRCs or for just interested community people? Are there things that we could do to help close these gaps? 

Barnes: Yeah, that's a great question, and it's a little, I guess it's inspirational for me to say this, because I know it's not easy. It's easier said than done. But I think the number one thing we have to do is dismantle racism, right? How do you do that? Don't ask me. But it's about us as a society really trying to center equity, center social justice, and really look around. When you see that you're only getting one picture, you see one person of color in the room, ask yourself, where are the other people? How can I play a part to get more people at the table, open up more opportunities, and really try to understand other people's lived experience? Again, I know it's inspirational and maybe sounds like pie in the sky, but I think until we can do that, we're going to continue down the same road, right? We're going to continue to have this sort of white supremacist view of research and society, and not understand that our world is becoming more diverse, you know, and that the health of our most diverse people is going to be the health of our nation, and until we can bring everybody to the table and give everybody opportunity, we're going to continue to lag behind all other countries. 

Chin: Well, with that, thank you, Dr. Lisa Barnes, for joining us on Dementia Matters, and thank you for your work and presenting it at the NACC conference this past fall. 

Barnes: Thank you, Nate. It's been a pleasure talking to you. 

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 Taylor Eberhardt. 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.