Episode Transcript
[00:00:02] Speaker A: Just to hear how, as a race, the African American community has been underserved, under researched, and to hear that there was an apology offered meant a lot. And then to go on to say we understood what we've fallen short. We're going to do everything possible to make improvements. And those weren't just words. I see it.
[00:00:39] Speaker B: Welcome to the Age of Aging, a podcast about living well with an aging brain, produced by the Penn Memory Center. I'm Jake Johnson.
[00:00:48] Speaker C: And I'm Terrence Casey. At the Penn Memory center and at Alzheimer's Disease Research centers like it all across the country, we face a real issue in research.
We are collectively and individually quite good at creating clinical research studies, observational studies, and so on. And we're good at getting people into those studies. But the problem across the country is representation.
When I started at the Penn Memory center about a decade ago, 18 to 20% of our research studies were made up by black and African American adults. Now in Philadelphia, where we're recording this right now, the city population is about 40% black or African American adults. So that's a real problem when we're developing treatments. We don't know that what we are creating will work for the population in general. If we were to simply accept the recruitment as it comes in without outreach, we would be very good at creating Alzheimer's disease treatments for upper middle class, wealthy white adults. And that's a problem because that population is not the one most at risk for developing Alzheimer's disease dementia. Black and African American adults are twice as likely as white adults to develop dementia. Hispanic Latino adults, one and a half times as likely. So it's really key that our studies here in Philadelphia represent particularly those populations. And it's really key that centers like ours across the country are doing the same for the populations that they represent.
At the Penn Memory center, what we've done over the last 10 years is expand our outreach team. We used to have an outreach coordinator. We now have an assistant manager dedicated to outreach, particularly to black and African American adults. We have a second outreach coordinator who is specifically focused on recruitment into clinical trials. And importantly, we're working closely with the research coordinators to make sure that they have an outreach focus in their work, that they represent the communities that they are serving. Sometimes that means that they come from the communities that we're serving, but most importantly, that they are seen in the communities that we are serving. I'm really pleased that over the last decade, the number of black and African American adults in our longitudinal study has gone from about 20% to over 40%, and now we're starting similar efforts to increase representation of Hispanic Latino adults. For more on this history, the success we've had so far, and the problems that we're still trying to solve, I'll turn it over to my co host, Jake.
[00:03:46] Speaker B: While we've mostly focused on research and clinical care on this podcast, some of the most important work done here at the Penn Memory center is community outreach. The main purpose of outreach at research centers like PMC is in addressing historical disparities in aging, research, clinical treatments, and the disproportionate ways minority groups in the US Are impacted by neurological conditions like Alzheimer's disease. To address these issues, outreach coordinators attempt to establish ties with surrounding communities in the hopes of reaching these underrepresented groups. Through community partners in churches, clinics, YMCAs, et cetera, coordinators provide educational information on aging as well as research enrollment opportunities. At the basis of this work is the idea that aspects of our environment play a fundamental role in our health, treatment and overall longevity. Researchers refer to these factors as social and structural determinants of health.
[00:04:41] Speaker D: So my name is Morgan Adams and I am currently the Assistant Outreach Manager at the Penn Memory Center. Social and structural determinants of health are aspects to our lives. Where we live, work, play, worship. These are things about our life that impact our overall health status. And so when you look specifically within the Black and African American community and looking at things like access to education, access to clinical care, access to safe physical environments, where you see large populations of these communities are sometimes communities that are the most under resourced, communities that face different adversities which impact brain aging.
[00:05:21] Speaker B: Morgan's work focuses specifically on Black and African American communities in Philadelphia, providing educational talks on healthy brain aging as well as recruiting participants for the Aging Brain Cohort Study dedicated to Diversity or ABCD Squared Study at pmc. This study uses brain scans, blood draws, and cognitive tests to better understand the aging brains of African American adults. The primary goal of the study, as well as others at PMC are to address a major issue that certain populations are more likely to develop neurological conditions like Alzheimer's, but have been historically underrepresented in research and care.
[00:06:00] Speaker D: Black and African Americans are about twice as likely to develop dementia but underrepresented in clinical research and clinical care. They're not the only minority population that are disproportionately affected. You want to highlight too as well that Hispanic and Latino individuals are about one and a half times more likely in comparison to their White and Caucasian counterparts.
[00:06:19] Speaker B: Dr. Eddie Lee is a neuropathologist at the University of Pennsylvania.
[00:06:23] Speaker E: So historically, our enrollment for brain autopsy in underrepresented, minoritized groups has been pretty low. We're working on addressing this, and it's actually a national problem. All the brain banks are trying to increase the diversity of our autopsy cohorts.
[00:06:43] Speaker B: Dr. Lee's research looks directly at the brains of deceased individuals in order to better understand how the brain physically changes with age.
[00:06:51] Speaker E: Subjects who are followed during life, a subset of them will donate their brain for research. And so I'm looking at the brains under a microscope, making diagnoses, trying to figure out how much pathology they have in their brain. So it could correlate that with the data we collected about them and when they were alive. When we look in the tissue, you could see neurodegeneration, meaning the number of neurons or nerve cells that you have in the brain decrease, and then you have reactive gliosis, which are kind of like the scar tissue that's building up in the brain. These are all associated with the buildup of abnormal proteins. So beta amyloid forms, what are called amyloid plaques or tau protein form neurofibrillary tangles. And it's those pathologies together which helps me diagnose a case as having Alzheimer's disease.
[00:07:36] Speaker B: Dr. Lee said that while genetics certainly play a role in individuals developing conditions that cause dementia as they age, research from epidemiologists has actually shown dementia rates to be decreasing in places like the US And Sweden. This suggests that environmental factors play a role in our likelihood for developing neurological diseases and dementia. When Dr. Lee started looking at environmental factors in relations to changes in the brain, he noticed an interesting phenomenon. An environmental factor like air pollution seemed to directly correlate with both more physical change in the brain and as well as lower cognitive test scores when a person was alive. However, Dr. Lee and colleagues also study a factor called area deprivation index, or adi, which looks at factors in a person's neighborhood, such as income levels, education levels, and various other social factors, and develops a score from 1 to 100. While a lower ADI score correlated with worse results on cognitive tests, it did not correlate with more physical signs of aging in the brain, which suggests that area deprivation impacts cognition as we age in a way we can't see under a microscope.
[00:08:42] Speaker D: When it really breaks down to it, fundamentally, we're looking at stress. The level of stress that a person experiences on a day to day basis impacts their brain. And so when you're looking at black and African Americans, Experiences of racism and discrimination Living in communities that might lack access to fresh grocery stores with fruits and vegetables, communities where it's less safe to be outside walking around in your neighborhood. These are all things that impact your health status inadvertently.
[00:09:13] Speaker E: There is something called cognitive reserve, meaning your brain has a certain capacity and certain reserve. And it looks like the data is telling us that the more deprived your neighborhood, that stress, that socioeconomic stress is making your brain less resilient, you have less cognitive reserve.
[00:09:33] Speaker B: Dr. Lee said that more affluent people who live in areas with things like better education, less crime, et cetera, may have more cognitive reserve, which might better protect their brain as they age.
[00:09:43] Speaker E: And so we see that in our data, the more educated you are, the better your cognitive scores. And that's thought to be this cognitive reserve, meaning through having a lot of education, you build up more synapses and your brain is more resilient to damage. If you're in a very wealthy neighborhood and you don't have a lot of stressors, your brain is relatively protected, right? If you're in a very stressful environment and don't have a lot of means in your neighborhood, that's associated with your brain being more vulnerable to developing cognitive defects.
[00:10:13] Speaker B: While the implications of these findings may seem grim, Dr. Lee said that there is hope.
[00:10:18] Speaker E: We found that there's a relationship so that if you're in a more deprived neighborhood, but you have high educational attainment, they kind of cancel each other out. And so that's giving us hints that like on a broader scale, if we provide more educational opportunities, if we lift up deprived neighborhoods, that, that actually has capacity on a, on a population scale to address cognitive decline in dementia.
[00:10:43] Speaker B: While places like the Penn Memory center can't make systematic and structural changes to a person's environment, it can increase access to educational and clinical resources.
[00:10:53] Speaker D: I'm looking at organizations that work with older adults within the black and African American community. And when we go out to health fairs, we're providing information on Penn Memory center resources, talking about Alzheimer's disease and dementia and healthy aging. But on the flip side of that, we also have a Healthy Brain aging presentation. So it's an actual 45 minutes to an hour long presentation on healthy brain aging. So we talk about some of the differences between different types of cognitive impairment. We talk about the importance of clinical research, we talk about the disparities that we see. And then how do we combat all that? What are things that you can do at home to take care of your brain and age healthily?
[00:11:31] Speaker B: Reverend Leroy Miles is a staff pastor at the Enon Tabernacle Baptist Church in Philadelphia.
[00:11:36] Speaker A: So we're, we're in the northwest section of the city. We are a large African American church. You know, some people say predominantly, and we are. No, we really are just the African American church. So we have about 12,000 members.
[00:11:52] Speaker B: Enon Tabernacle Baptist Church is one of the Penn Memory Center's oldest and closest community partners. Reverend Miles said his church's introduction to the Penn Memory center was one that was mutually beneficial as he and other members of his community were seeking information on aging.
[00:12:08] Speaker A: My mother was aging. We began to notice things about her cognitive decline. One time she picked me up from the airport. She probably shouldn't have even been driving, but she picked me up from the airport and we were headed down the highway and she drove past the exit.
And I didn't think much of it at the time, but she made a big deal and said I made her miss the exit. And so we just started noticing things like that. But she, of course we knew she wasn't going to listen to us as the children. So I figured if I'm experiencing this as clergy in this large church, there's gotta be others that are experiencing similar challenges with being the sandwich generation, raising young children, and been sandwiched between the caring for our aging parents. So we actually pulled together a workshop. And so we knew there needed to be a neurologist, someone with expertise, a social worker, and then someone who was a caregiver. And Dr. Carlwich's name came up. Apparently he had provided care for one of the families here. Little did we know that of course, Dr. Carniewicz is an expert, a renowned expert in the field. And we're blessed to have him in proximity to us. So we met, he did a wonderful talk. My mother came, another sibling came, and we heard the talk. And so that began a relationship. We started to offer those. This was years ago, but we started to offer them a couple of times a year. And here we are now, I'd say almost a decade later, and we have this wonderful, robust relationship. The impact is far reaching.
[00:13:51] Speaker B: Part of the work of outreach is trying to meet communities where they are and undo a lot of the stigma associated with research institutions like the Penn Memory Center.
[00:14:00] Speaker E: The medical establishment was not responsive to the needs of underrepresented groups and things like the Tuskegee experiments and other things where the medical establishment actually unethically experimented on underrepresented groups. So there's a lot of distrust of the medical system, which is probably appropriate given the history of American medicine. And it's on us to try to restore that trust in the medical establishment as a whole, but particularly for medical research. So establishing that trust is the first part of having more people enrolled in these studies.
[00:14:35] Speaker D: There's a bias that can exist both on the participant standpoint, but also on a provider standpoint. There often is this association that individuals within these communities don't want to participate in clinical research or they're unwilling to participate. And so your biases impact the recruitment of these individuals as well as for participants. You know, you see some of things that have happened in the past, and there's this fear that's associated with participation in clinical research. And so what I find a lot of times when I go into communities and talk about the Penn Memory center, the first reaction is like, oh, my gosh, this is so amazing. Like, I didn't even know this exist. And so having a center to go to that is specific to cognitive impairment, Alzheimer's disease, and dementia is something that a lot of people want to have access to.
[00:15:23] Speaker E: We also don't want to talk too much. We also need to listen. So. So being able to go into a community and say, like, you guys, tell us what's valuable to you. We have our ideas about. About what. What we need to better understand this disease, but we have to have that humility to go in and just say, what do you guys need? How can we serve you guys?
[00:15:45] Speaker A: Over time, we hear a lot about trust. There's always this conversation about trust in healthcare and pen and every other healthcare provider has made mistakes. But I think the difference is being open to learning and willing to hear. And that's something I've seen improve over time. We know that the system is also taxed and overwhelmed. And so I see this effort on the part of Penn and others to make an effort to address the demand and making improvements for access of care and understanding. Penn has come to us on many occasions. That wasn't always the case. Resources were within the ivory tower. Then the four walls, hey, it's here for you, but you got to come and get it. And we knew or we've learned that, yeah, that's not always as easy as it sounds. And I just appreciate the dialogue, the conversation, even around racism and some of the other challenges that we've had. We did a zoom call some years ago just to hear how, as a race, the African American community has been underserved, under researched, and to hear that there was an apology offered meant a lot. And then to go on to say we understood when we've fallen short we're going to do everything possible to make improvements. And those weren't just words. I see it.
[00:17:25] Speaker B: While the studies that partners like Reverend Miles helped to promote to their community, like ABCD Squared, will ultimately lead to greater understanding of how aging impacts the brains of African Americans, this type of research will also take time.
[00:17:39] Speaker E: When you enroll somebody for clinical research, they'll hopefully live for many, many, many years. And so I think down the line, five, 10 years, as we get more diversity in our cohorts, we'll be better understand what's going on.
[00:17:53] Speaker B: However, the upside is researchers are getting better at identifying biomarkers of Alzheimer's and other causes of dementia in the blood, meaning that they don't have to rely on autopsy as much as it relates.
[00:18:05] Speaker A: To the clinical trials and the studies that are, that are taking place. Just super excited that we're, we're being asked on the front end to be part of a conversation as opposed to being brought in as an afterthought.
[00:18:27] Speaker C: I loved Reverend Miles comments at the end there. And one thing we didn't really get much of a chance to get into in that story is how important Reverend Miles and Enon Tabernacle Baptist Church have been to our efforts of getting black and African American representation. From 20% of our longitudinal study to about more than 40%. Years back, we had created the D Squared Study, the Aging Brain Cohort study dedicated to diversity. And what I loved about that project was that this was not designed by the Penn Memory center, but rather it was designed in collaboration with community partners. And by working with Reverend Miles in the design of that study, we ensured that it was something he was comfortable asking everyone in his community to participate in. And it made a huge difference.
We've lost count of just how many people in that study came from Enon Tabernacle Baptist Church. I think at last count, it was, I don't know, more than 60 individuals or so. Dr. Lee, I think said it best, and sometimes the best thing that these Ivy League educated neurologists can do is be quiet and listen to people say what they want. Reverend Miles in particular, helped reshape how we think about our community outreach. For the longest time, we would go out to a community, we would offer a healthy brain aging talk. Morgan Adams leads a lot of those talks, and they're very helpful. It's good information about what Alzheimer's is, what dementia is, what the Penn Memory center is, and so on. But Reverend Miles challenged us to think about what data we can give people. What members of his community want are not just those helpful tips, but a individualized plan for their own care moving forward. And that's not really something that exists in this space.
So we're developing a number of projects within our outreach team and then some research projects as well, to make sure that we can actually meet those expectations.
[00:20:38] Speaker B: Dr. Lee's point about listening, I think, was the most impactful part for me about this. There's all of these things that the Memory center can do in the community and reach out and try and enroll people in studies. But at the end of the day, if you're not listening and actually reacting to the needs of that community, you're kind of doing the same thing as imposing your kind of will or ideas about what is right and what is good from the ivory tower of your research institution. It's. It's strange to say, but it's the most radical change that an institution like Penn Medicine can do, because it completely flips the script in a lot of ways about who is meeting whose needs and whether that's actually a relationship that is mutually beneficial to both parties. Parties. And then I also was really heartening to hear that Reverend Miles said that they do feel more listened to and they do feel like their needs are actually being considered and their perspective is actually being brought in at the front end and not at the back end.
[00:21:42] Speaker C: Yeah.
[00:21:42] Speaker B: And.
[00:21:42] Speaker C: And kudos to Morgan Adams, who we heard at the beginning of this story. She, over the last two years, has really strengthened that relationship with Enon and worked to increase representation of black and African American adults in the D Squared study and so on. But I think Morgan in particular, really embodies the strategy of listening before speaking. She is our primary staff member for giving these healthy brain aging talks out in the community. She's very good at it. But what she has been setting up also is what we're calling the Participant Advisory Board. But the point of all of this is to make sure that the voices of research participants, patients, caregivers, and particularly those from underserved communities are heard by the outreach team, by the directors of the Penn Memory center or other Alzheimer's disease research centers, and their perspectives can create change in how we run research and outreach. Our Participant Advisory Board is still in its infant stages, but I look forward to season three, season four of the Age of Aging, where we'll really get into how those views have shaped the work that we do here.
[00:22:57] Speaker B: Yeah. And we've said them a few times this episode, but I just want to highlight again how profound those statistics are that African American adults are twice as likely to get dementia. And Hispanic and Latino individuals are one and a half times as likely as Caucasian people. I mean, that is a crazy statistic. And talking about systematic and social and historical disparities can feel very theoretical sometimes. But when you look at statistics like that, it becomes very real. And you really, you really start to understand how much people have been impacted by these disparities and how important it is to actually reach out and communicate with these populations.
[00:23:41] Speaker C: That statistic is startling. But I think the important thing for our listeners to take away from this is that being black does not by itself make you more likely to have dementia. Being Hispanic or Latino does not make you more likely to have dementia. So Dr. Lee's comments help reframe what it is we're talking about. I think those populations are more likely to have Alzheimer's disease or other causes of dementia, but it is not their race or their skin color that has caused these issues. What we're seeing when we talk about those statistics are generations of racist structures in healthcare, in community building, in economics, and so on. And I think you summed it up nicely in your piece that the Penn Memory center cannot fix racism. We can't create systemic change in these communities. And Dr. Lee made a really good point that we could correct some of these issues by investing in education.
Years ago, Dr. Karlwish, who's a co director of the center and the executive producer of this show, I remember, was speaking at an event and someone asked him, you know, what can we do to fight Alzheimer's disease? And this was before we had any of the anti amyloid therapies that are now available. And the first thing he said was invest in early education. And people were really confused by that. And you're thinking, kindergartners, second graders, what does this have to do. But supporting education at a young level or supporting community activities for teenagers can lead to these generational improvements in communities that improve community health and level the playing field. One other impact of the D Squared study and the inclusion of Reverend Miles and Inon Tabernacle Baptist Church has been adding in a training component that also has an emphasis on underserved communities, specifically black and African American adults in Pennsylvania. And that the same grant that supports the D Squared longitudinal study supports a summer training program, summer training in aging research, internship, open to college students, graduate students, medical students, and so on. Because the state of Pennsylvania, when they created that grant and when we signed up for it with Reverend Miles and other community partners, everyone was on the same page that this isn't just a clinical issue, it's a social issue. And one of the many ways that we can combat that is by developing a workforce that comes from the communities that we serve and can represent their needs and their perspectives. Goes back to what Dr. Lee was saying about listening. One of the best ways you can guarantee that you're going to listen to your community is by being from it. And we're really pleased that that program has now been running for a few years, and some of the students who were part of the initial program are now in postdoc programs or are now pursuing neurology residencies and so on. Change is slow in all elements, Perhaps in education as much as any other, but the efforts that were starting eight, nine, ten years ago when I started here, we're now seeing actual impact in our clinic and in our research.
[00:27:17] Speaker B: I also didn't want this piece to come off as like a PMC puff piece that we are so great and you know, we're doing everything correctly. Like we are two white guys talking about this right now. We want to start integrating more people into this conversation and it's an ongoing process. We are certainly not perfect. We're far from perfect. But I do think that we are headed in a right direction and that listening and being aware of these perspectives is super important.
[00:27:48] Speaker C: Yeah, that's very fair. I think we are headed in the right direction.
The National Institute on Aging, which funds Alzheimer's research centers like ours, is requiring that centers take certain steps towards measuring social and structural determinants of health, bolstering their outreach operation and including projects like the parts like the Participant Advisory Board that I mentioned earlier. So change is slow, progress is slow, but it is headed in the right direction.
[00:28:20] Speaker B: Yeah.
Thanks for listening to this episode of the Age of Aging. The Age of Aging podcast is supported by the Penn Memory center, the University of Pennsylvania Alzheimer's Disease Research center, the Institute on Aging, and the Penn FTD Center.
[00:28:38] Speaker C: Contributors include myself and Jake Johnson, as well as Nicolette Calcovecchia, Dalia El, Sayi, Marie Njigneri, Jason Karlowish, Emily Lubarjan, Meg McCarthy, and Megan Sharp.
[00:28:52] Speaker B: More information on the stories you heard today can be found in our show Notes and on our website, pennmemorycenter.org.
