Dr. Charles Windon, Dr. Joyce Balls-Berry, and Dr. Jordan P. Lewis discuss the barriers to dementia diagnosis and care — and how they're crusading to bring brain health equity to communities of color.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.
Research shows that Black, Latino, and indigenous Americans have a higher risk of neurodegenerative diseases like Alzheimer’s than their white counterparts. Yet, these populations are dramatically under-represented in clinical trials for the drugs to treat these diseases — if they are represented at all. And outside of research, studies indicate that many face barriers to accessing basic brain health care, including discrimination at the doctor’s office and high costs for treatments.
So, what can be done to help boost brain health equity, improve brain health care, and make clinical trials more accessible in communities of color?
Being Patient EIC Deborah Kan sat down with a panel of healthcare experts to understand what some experts are doing to help bridge the brain health gap in their communities. In the talk, they discuss stereotypes, cultural norms, and barriers to dementia diagnosis and care that experts are addressing to provide brain health equity in communities of color.
- Dr. Charles Windon, assistant professor of neurology at the University of California San Francisco Memory and Aging Center. He also leads MAC outreach efforts to the African American community in the San Francisco Bay Area.
- Dr. Joyce (Joy) Balls-Berry, associate professor of neurology at Washington University School of Medicine, core leader for the Health Disparities and Equity Core in the Knight Alzheimer’s Disease Research Center, the associate lead for precision health for the Institute of Clinical and Translational Science, and the academic engagement lead for the Greater Plains Collaborative.
- Dr. Jordan P. Lewis, the associate director of the Memory Keepers Medical Discovery Team and a full professor with the Department of Family Medicine and Biobehavioral Health at the University of Minnesota Medical School, Duluth campus. In addition, he serves as the co-leader of the ADRD Data Sovereignty Advisory Group.
Read on for insights from the panel, or watch the video below.
Being Patient: How have we not been able to advance, given the lack of diversity in research?
Dr. Joy Balls-Berry: We can look at clinical trial data, especially with drug development and things like that. A really good case study would be when Aduhelm came out a few months ago, and how the diversity in that trial was over 3000 participants, and only about 20 of the participants were people of color. Now, not only was that a disparity that happened with Aduhelm, there was also the fact that when the drug came to market, the cost of the drug was also an issue at 50-something thousand, and then the drug company Biogen reduced the cost to a little over 20,000, like 26k. But that didn’t take into consideration all of the things that have to be done when a patient is prescribed that particular drug. You have to go to an infusion center, which means transportation. You also have to have a care person or a support person with you when you take the medicine, which means someone else also has to have time.
Then, there were multiple MRIs and other things that would also happen through that care scenario. In thinking about participants that come from very diverse backgrounds, are those that come from lower socio-economic strata? Are they going to want to be able to afford the medication? Is it going to be covered through insurance? Or Medicaid or Medicare? Then what does that look like? Then, where was the misstep in terms of thinking about the diversity of the participants that were enrolled in the trial?
That was a big issue and new drugs that are coming to market that are somewhat promising in the same space. Some of those have tried to diversify, but some of those populations have not necessarily been U.S.-based populations. We also have to consider that as well, and I’m not a physician.
Being Patient: Dr. Windon, could you tell us a little about the clinical perspective on diversity in research?
Dr. Charles Windon: When we think about the purpose of research for the purposes of drug development, inherent within clinical research and clinical trials is the assumption that whatever therapy that is being developed is actually going to be applicable to the target population to the population in which it’s being introduced. So, when we talk about diversity in the context of research and in the context of clinical trials, it’s important to also define what are we talking about, specifically with regard to diversity? So many of us focus, obviously, on ethnocultural diversity, but we understand there is no biological basis to race. What there is, however, is that there is different exposure to the different social determinants of health that is largely based on your ethnic cultural identity as well as additional factors.
For example, if you are African American and live in the United States, you may have greater exposure to things like structural racism, the historical practices of redlining, and other things. All the social determinants of health that can actually impact your risk of disease, and not only your risk of disease but actually the disease course in and of itself.
What are we lacking when we don’t have diversity in clinical trials? Well, we’re creating a medication that is basically tested in a group of individuals who don’t reflect oftentimes the diverse lived experience of individuals in the United States. I would argue that our knowledge about the natural course of the disease itself is sometimes not comprehensive because we don’t have people from all different walks of life. The therapies that are being developed again may not be actually the most efficacious because you’re not including this very wide collection of individuals that would inform the different therapies.
From a clinician standpoint, if I’m sitting across the table from an individual in my office, and they’re asking about the newest therapy that has been developed for Alzheimer’s disease-modifying therapy, one of the discussions that we truly have to have is, who was actually in the research trial that provided the data for this medication to be approved? Were the individuals who were in the research trial like me as a patient? Did they have things like high blood pressure or diabetes? [Do] they have other conditions as well that may have an impact on the actual impact of that on the efficacy of the therapy itself? It becomes more difficult as a clinician to really talk about translation into clinical benefit when you actually get to the level of dealing with individual patients, one on one.
Being Patient: Dr. Lewis, Can you tell us about the cultural barriers that exist within the Alaska Native populations to research participation?
Dr. Jordan P. Lewis: I think it goes across a variety of different groups, like this mistrust of health care, whether it’s past unethical research that has happened in our communities or bad experiences with health care providers. We hear a lot of stories. In Alaska, for example, you may never see the same healthcare provider twice, whether it’s because they come up because they want to experience Alaska or they’re there for a variety of different reasons. People get tired of telling the same story over and over.
“How do we translate this research,
talk about clinical trials in a way
The other experiences we’ve had as one could be health literacy issues. How do we translate this research, talk about clinical trials in a way that’s understandable? We’re working with communities now, looking at clinical research that is beneficial to the community, and figuring out how do you frame that in a way where people see the benefit beyond just the clinical aspects? For example, we’re learning from our communities that positioning that research in a way that participating in clinical research will benefit the next generation. Your participation will improve the quality of life for somebody else. Taking it from off of them like this is for you only, but helping other people as well.
It’s the challenge of not seeing an instant benefit or the promises have been broken. There’s a lot of different variables that can contribute to this idea of fear. I would say, though, in Alaska, that the younger generations who may have a higher health literacy are more apt to join clinical research and maybe use them as an avenue to talk to older adults or people who are experiencing cognitive impairment.
Being Patient: Anything that goes wrong with the brain is not something people want to talk about, especially in diverse populations. Tell me a little bit about what you’re seeing out in the communities in regard to talking about brain health. Is that norm changing?
Balls-Berry: As part of my NIH grant, where we are looking to diversify clinical trial enrollment and enrollment into other research, just not trial design, but even observational studies. We’re creating a research registry that we call COEQUAL, where we’re trying to reach a large cross-section of potential people that have no cognitive symptoms for Alzheimer’s disease or related dementia. We held listening sessions with a little over 300 people, and trust is still coming up as a factor. People are saying things like, “In our community, we don’t necessarily see this as an issue. We just look at it as normal aging.” Then when we start doing education around Alzheimer’s disease and different types of dementia, we say, “Well, no. Normal aging looks like this. This is not normal aging.”
The other thing that we’re seeing is, and I even can say this anecdotally, you know, as a caregiver, my mom has had some health challenge, a lot of health challenges, especially in the past few months, where she had brain surgery in 2007, and a bunch of other things going on with her cognitive health. She doesn’t like to talk about some of those things. I’ve said to her, “Well, if you don’t talk about it, then how do we do more prevention about it?” So, I’ve asked permission from her on the things that I can share.
Now, versus my dad, who passed from cancer about it’ll be seven years in October, he was a scientist. For him, talking about his health, being one of 12 or 13 people with a certain presentation from a rare presentation for bladder cancer, he was like, tell the world. He told us physicians who were on faculty at Wash U. He’s like, “Even if I pass, you need to write this up as a case study because most of the cases were not on African Americans.” But there is still that “I don’t want to appear weak.” I don’t want to share these things because of trust, because of fatalism, because will this impede me from having the resources I need in order to live if people know?
“We have to be able to provide
safe spaces for people to share their stories.”
There’s a variety of factors, and I found this across diseases, not just Alzheimer’s disease. Especially in my community as a Black person, [when I’ve said] “We’re studying this,” I’ve been told not to share certain things. Around how I advocate as a caregiver, not just my life as a scientist, “Girl, you shouldn’t talk about that.” But why? We have to be able to provide safe spaces for people to share their stories, and then also honor when there is apprehension, and then help them find the words to share them in a way that they don’t have more harm.
Being Patient: Dr. Windon, you do a lot of community outreach with UCSF. Tell us a little bit about how you’re approaching gaining the trust of people of color.
Windon: I’ll speak about the outreach efforts we’ve been doing to the African American community in particular, which I spearhead. How do we actually go about building relationships? How do we actually go about gaining trust?
I can give you a little bit of history. We historically didn’t actually have significant outreach to the African American community prior to myself joining in training and then actually becoming a faculty member. I kind of helped build it from the ground up and have seen it through the different iterations. We were very intentional under my leadership in terms of approaching the community with a no-ask policy, meaning we went to community leaders, we went to individuals in the community, and we had no specific ask for research participants, we had no specific ask for people to come to our center, we add, we literally came with an offer. We wanted to just provide education.
We asked folks in the community, “Hey, can we just have conversations with you about brain health? If we organize a couple of activities of brain health bingo with a brain health lecture afterwards, would you be willing to show up?” That’s actually how we operated to begin. We did that for over a year where all we were trying to do was get in front of folk, have conversations, and just allow them to get to know us as that relationship developed.
As people started to basically open up and trust us, then I believe people are naturally curious; the question started to come in about “Well, what does it mean to actually get a memory checkup? I read something about research at UCSF about brain health. What are you all actually doing in this research kind of space?”
So naturally, a lot of those things started to actually just creep into the natural course of conversations that we were having. Again, the approach was very, very intentional, the approach being a no-ask approach on our behalf. We sought to try to establish this bi-directional relationship where we were offering our services, folks felt like they could openly communicate with us, and there wasn’t necessarily the sphere of an ulterior motive that we were going to follow the precedent that had been set before. The precedent from major institutions in the community is that a researcher comes in because they want research participants or something else.
The second the grant funding is over, that researcher is then gone, and the community never actually hears about the results of the research or sees the researcher again. We really tried to combat that and have been, I think, effective in doing so.
Being Patient: Dr. Lewis, can you tell us about your experience building trust in native communities in your work?
Lewis: My career, up until moving here almost four years ago, has been really focused on how Alaska Natives understand healthy aging and having a more holistic approach to [what] the aging process look like, focusing from a strength-based perspective. Over the years, we’ve established those strong partnerships and through conversations, whether it’s just visiting. Part of our work is just being in the community.
Without the research perspective, we want to be seen going to basketball games, going to the grocery stores. They open up right in there, like, “Well, we hear about dementia, we hear about cancer, we hear about environmental toxins.” They want to know more. Following those leads, we kind of begin asking more questions like “What do you want to know about that topic” or “Let’s look at what Alzheimer’s could be in this community.”
All of our work that we do we have elder advisory councils on every project, every grant we have. They kind of help us guide like what are the appropriate questions? Who are the people we should have at the table? Having that buy-in is definitely, really important. They’re shifting now towards, well, elders are important, but we need to also include youth at this table; we need to have people who are younger because they’re the people who are going to lead this community forward. That’s how we got to where we are.
Being Patient: Can you give us an example of an appropriate question?
Lewis: This is just based on the community we’ve worked in, and it may be different in different communities, but it’s really focusing from, I would say, again, that strength-based perspective. Like, “Okay, well, this is your concern. If you’re worried about memory issues, can you share more about what that is?”
Having either the elder advisory committee or the tribal council kind of work with us to figure out how [to] ask that in an appropriate way? Maybe we just want to know, “What is brain health? What is Alzheimer’s?” As was mentioned earlier, you know, for most older adults in Alaska, it’s a natural part of the aging process, so it’s not really a concern. How do we ask those questions like, “What do you think Alzheimer’s means to you? Or where did you learn about this? What do you think it means? How would you translate that into maybe education or training?”
“While there still may be cultural, spiritual
views about dementia that we need to educate
our providers on, they’re open to these discussions.”
Again, this idea that bringing the youth to the table is really interesting because they have a much more biomedical perspective, whether they went to college, they have higher health literacy, they maybe CNAs went to med school, or whatever. They are coming in with this. We need to learn more about the medications; there are caregiver support programs or these things that we could be accessing.
Blending those two together has been challenging, but it’s also been enlightening to hear that the elders are more open to that. They’re realizing that while there still may be cultural, spiritual views about dementia that we need to educate our providers on, they’re open to these discussions and developing these questions.
Being Patient: We got a question from the audience: Isn’t there a need to better understand ethnic differences in disease ideology and natural history? I’d also add on genetics as well. Are we looking through that lens in terms of solving ethnic differences that pertain to research?
Windon: This is an area of really my interest in particular, and some of my research in this area. [I] absolutely agree with the idea that we need to better understand ethnocultural differences in disease prevalence. Why do we need to understand ethnocultural differences? It goes back again to therapies.
How are we going to manage these things? If we have a disease-modifying therapy for Alzheimer’s disease, but the vast majority of individuals who have cognitive impairment who identify as Latino African American don’t actually have Alzheimer’s pathology within the brain, we would then be committing individuals to a therapy that is not going to be as effective as opposed to other therapies.
So, there are many folks who are because we now have the tools to be able to do this. There are many folks who are looking into what are ethnocultural differences in disease rates that we have kind of in the literature and in population.
What are the actual causes of disease? Not all memory loss is Alzheimer’s pathology, right? Not all cognitive impairment is something like Lewy Body pathology. We have biomarkers that actually can know while somebody is still alive, detect whether or not they have something like Alzheimer’s pathology, and their biomarkers coming for things like Lewy Body pathology, Parkinson’s disease, etc. So, using these tools and more inclusive research, we can start to make headway in understanding the predominant causes of cognitive impairment among different ethnocultural groups, again, that are largely influenced by things like social determinants of health.
If you live in an area where you have a food desert, meaning you don’t have access to good nutrition, you don’t have access to resources for physical activity; you oftentimes are at higher risk for things like comorbid, vascular conditions, hypertension, hyperlipidemia, and diabetes. We know when you have these vascular conditions, it increases your risk of cerebrovascular disease as well, and cerebrovascular disease can cause cognitive impairment. Many researchers, including myself, suspect that a lot of the reason for cognitive impairment among underrepresented populations is actually more vascular in nature. It’s driven largely by these different social determinants of health. So, it’s an important question and something that’s important to study as these ethnic, cultural differences.
Balls-Berry: I would agree, and then thinking about the risk factors for things like vascular dementia and thinking about the social determinants of health, how do we move to a place of what we call precision health? [Precision health] takes into consideration the individual factors that might cause different risk factors for disease. It looks at the genetic department components and other things like that. We also, as Dr. Windham mentioned, [are] studying those structural vulnerabilities that lead to health disparities, which then increase a person’s risk factors for a variety of diseases.
One of my biggest concerns when I started working in the aging and brain health space was the fact that I knew, as an epidemiologist and a health educator, that we probably needed to be doing more prevention early. Some of the studies that have come out of WashU, under the direction of John Morris, and some of my colleagues have found that many times the risk factors start 10 to 20 years prior to any symptoms. If that is the case, and we’re not only talking about Alzheimer’s disease but other types of dementia, or cognitive impairment, then why hasn’t the funding shifted in a way that will allow us to start thinking about prevention for those that are in their 20s and 30s? Before there is changes in vascular health? Which then goes back to those observational studies and the community.
Dr. Windon also mentioned redlining. In St. Louis, there’s a lot of redlining. You go to deep north city, there’s no hospitals, there’s food deserts. [If you go to] deep south city, it’s the same thing. Deep north city is predominantly African American and Black. So, you have to think about it in a variety of ways, and those ethnocultural factors are huge, but also the social-political landscape related to racism and other forms of discrimination have impeded many communities from being able to have the access that they need in order to prevent things related to vascular disease.
“Why hasn’t the funding shifted in a
way that will allow us to start thinking
about prevention for those that are
in their 20s and 30s?”
Windon: [In terms of genetics], we know genetic diversity is clinal all across the human population, right? You don’t have a specific genetic code just because you’re African American or Latino or Asian, so to speak. Again, this speaks to the importance of inclusion in terms of research. We want individuals from every different walk of life to capture that kind of diversity.
One thing that’s really important and Dr. Balls-Berry’s various comments were right on point with this idea of prevention. There’s some very good research. There’s a paper that was put out by Livingston some time ago that suggests 40 percent of dementia is actually modifiable. So, even if you have an increased genetic risk for dementia because you have a first-degree relative who had Alzheimer’s, you can offset that significantly just simply by engaging in preventative measures.
Being Patient: I think you’re referring to the Lancet study, and we actually have a guide that we built from that study, 12 Ways to Prevent or Delay Dementia. I want to end this talk on stories of success. Can you enlighten us on some of your work you’ve felt has made a difference in improving brain health equity?
Lewis: In our successful aging work, going to this idea of prevention, and thinking about the work we’re doing and getting all ages to think about what does healthy aging mean, in some of our communities we’ve worked with, we’ve learned that a lot of our communities haven’t asked our elders, “How have you aged? What have you done?”
We all kind of know: eat a healthy diet, stay active, and all these things that the general population knows are important for preventative health, just good general health overall. Through our findings, we’ve had a few communities realize that “Oh, this idea of bringing generations back together, the way it used to be, actually promotes health in a lot of different areas, not just physical health.”
We’ve seen a few communities actually use spaces in the community that have been unused or have been renovated to have very specific culturally-based intergenerational programming. It’s been exciting to see not only the benefits or the older adults who now may have a sense of purpose, their identity, they can speak their language, or revive these cultural practices that have been, I wouldn’t say lost, but maybe buried underneath because of you know, whether it’s boarding schools, or missionaries, or whatever has been happening in their community.
On the other end of that spectrum, you see these youth again, like realizing they can have that pride in being Native, and they can learn their language, they can learn the history of their communities. That aspect of there’s more to health than just being physically active and having a healthy diet, but that sense of pride also contributes to a healthier well-being mentally and spiritually as well. Hopefully, that kind of work will lead to better health practices over their lifespan and hopefully prevents health disparities later in life.
Balls-Berry: I’m from St. Louis, so I grew up here. After living away for about 19 years, when I moved back, having spent time at UCSF and other places as well, one of the big wins that I received was actually not necessarily related to Alzheimer’s disease, specifically. When I moved back home, I wanted to reach out to community-serving organizations like nonprofits and the like. What I realized is that many of the CEOs of these agencies were students of my mother, who taught high school here locally, and I’m named after her, or either they were colleagues of my dad’s or friends of my older brother. I’m like, “Well, how is this happening?”
It ended up being this very serendipitous thing where within the African American community, we have play cousins and uncles and things like that, so my dad’s best friend passed from Alzheimer’s complications. When he passed, his family, and I have permission to share this story, donated his brain to the Knight Alzheimer’s Disease Research Center. He was a longtime study participant. His daughter is my community chair for my advisory board for my research lab, and all of these things. So, there ended up being this bigger, familiar connection for me in this disease space that I was unaware existed before I came home.
All of my big partners that serve on my advisory board have some connection to people I grew up with, which means to me that this is not only my “job” for WashU, this is also part of my calling to be able to see some wins.
Then, when we did what we call our brain aging cafes, our listening sessions within the community, each time we did one, a community member said: “Can you come to my church?”, “Can you come to this community center?”, “Can you come talk to our group?”, “Can you provide education to this group?”
It started opening up doors for us to be able to provide more education about dementia, and brain health overall in a way that I know that we’re making those that came before us proud. For me, that’s a win.
We’ve talked to over 300 people, none of which had been approached to be in any of our many of which not all of them, but over probably 90 percent of them have not participated in any of our studies at WashU. Why? WashU is right here.
So, that showed me that we needed to be doing more. I’m hoping that through these efforts, that we’ll be able to create an opportunity to prevent what Dr. Windham was describing, helicopter research because everything that we’re doing has to go back to the community.
Windon: A lot of things come to mind, I think the one thing that has been the most touching and the most impactful to see is actually to see community members become ambassadors for brain health themselves and actually pick up the torch and go and try to make a difference in the community with the knowledge that we’ve equipped them with around brain health. I’ll give you a specific example. We, at the end of last year, had a group of about 20 individuals come from neighborhoods around the San Francisco Bay Area. We had them come actually for a day-long kind of symposium about brain health.
These were individuals that I had gotten to know over quite a bit of work in the community over years of work, They came to our research center, we actually bussed them in, and we provided meals. We provide a little bit of kind of swag, giveaways for them to take home, but we really provided a comprehensive kind of education in Alzheimer’s, dementia, and then actually the importance of giving back, the importance of contributing specifically through things like research. We all visited the brain bank together and went through some brain slides where we actually had individuals look at a real live brain that had been prepared for pathology.
After that day, I obviously have relationships with each of these individuals, and they’ve kept in contact with them, but to see what has happened as a result, where they’ve gone back to their communities, and they have actually started initiatives. They’ve started initiatives at their churches, and they’ve started talking with local senior centers about the importance of brain health activities to promote brain health. They tried to make some headway in trying to get folks also more interested in brain health research.
To know that by having just a small impact in the lives of some folks in the community, they can then really amplify the importance of the message and feel like they’re equipped with the tools they need to make a difference in their own community, that has been by far one of the most rewarding things far above, the fact that we’ve been able to increase the number of folks coming into our clinic from underrepresented populations.
The fact that we’ve actually been able to set up volunteer clinics in the communities where people need the most help and go and meet them where they are. All of the programming we’ve done, having them pick up the torch and really become ambassadors, has held a special place in my heart.
This interview has been edited for length and clarity.
Katy Koop is a writer and theater artist based in Raleigh, NC.