Incorporating Cultural Knowledge: Improving Alzheimer’s Disease Research for Veterans and Native Americans

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.

Chin: Welcome back to Dementia Matters. On today's episode of Dementia Matters, we're going to talk about Alzheimer's disease in military Veterans, and more specifically American Indian Veterans. My guests are from the Wisconsin Alzheimer's Disease Research Center here in Madison, where they work to educate Veterans about Alzheimer's disease prevention in research. Dr. Cynthia Carlsson is a professor, geriatrician, and Alzheimer's disease researcher at the University Of Wisconsin School of Medicine And Public Health. Since 2018, she has also served as the director of the Wisconsin Alzheimer's Institute. Through her work, Dr. Carlsson researches the effects of midlife vascular factors like high cholesterol, on a person's risk for Alzheimer's disease and treats Veterans dealing with memory issues at the Veterans’ Hospital in Madison, Wisconsin. Mr. Daniel A. King is a citizen of the Oneida Nation of Wisconsin and the Alzheimer's Disease Research Center's Veteran recruitment coordinator. Mr. King is a US Army Veteran and has been involved with many Native American organizations over the years including serving as co-chair of the Veterans Committee of the National Congress of American Indians and the president of the Wisconsin Indian Veterans Association. Dr. Carlsson and Mr King, welcome to Dementia Matters.

Daniel A. King: Thank you.

Dr. Cynthia Carlsson: Thank you Dr. Chin.

Chin: We know that Veterans carry a higher risk for Alzheimer's disease than the general population. Dr. Carlsson, can you explain why this is?

Carlsson: That's a great question and one that requires further study. So we know that Veterans do have risk factors that are slightly different than people in the general population. We know that Veterans have a higher risk of being exposed to combat-related injuries such as blast injuries; it could affect our thinking, but also these experiences carry a higher risk of developing something like post-traumatic stress disorder. These factors, and other factors like vascular risk factors, depression, and some other related conditions in combination, could put Veterans at higher risk for developing dementia, but some newer studies support that maybe this isn't the case. So again, where there's a lot of work that needs to be done to better see how we can help Veterans protect their memory in the long run and figure out what are factors we need to address specifically so that they can have good thinking abilities later on in life.

Chin: Well certainly this is a population that needs to be better understood and researched. And so you, Dr. Carlsson, you and your team are establishing a special focus on Veterans and Alzheimer's disease and cognition here at the University of Wisconsin. What does this program look like and why here?

Carlsson: Well, at our Wisconsin Alzheimer's Disease Research Center - this is funded by the National Institutes of Health -- we try to enroll a diverse group of people into the program because we really want to see what are the key factors for people from different communities in the risk for Alzheimer's disease. So for example, we know that persons who are African American or are Native American or Latinx, that they have a higher risk of dementia, and also, you know, with some data that support that Veterans might be at a higher risk too, and we want to see what are those factors, in combination and alone, that could increase a person’s risk for dementia. With our Alzheimer's center here at Wisconsin, we have a good diverse group of over a thousand participants who've had baseline assessments done. They get good detailed cognitive testing questionnaires about lifestyle factors and exposures and things such as biomarkers to look at their brain health and be able to assess how this is affecting them as a person. So being able to combine all this information, get a diverse group of people into the center really helps us to better understand how do Veterans and Veterans from unique subpopulations, how is their risk for dementia different and how can we tailor prevention therapies and treatments to people in those unique groups.

Chin: And of course in order to study a unique population or a different population, you need to be able to engage with that population and connect with them. And so with -- Mr. King, welcome to the show. And frankly I'd first like to take a moment and thank you for your service to this country. You served in the US Army from 1971 to 1975, during which you served in Vietnam with the One Hundred and Seventy Third Airborne Brigade, Seventy Fifth Ranger regiment. I hope I said that correctly…

King: Yes, you did.

Chin: - but I want to take a moment to just say, thank you. Now presently you are a special liaison between the Wisconsin Alzheimer's Disease Research Center and the Veterans across this great state. But before I get into your work for our center, I want to ask you about your own experience as a family caregiver for your aunt and your mother, both of whom had Alzheimer's disease. What was your role in caregiving and what was that experience like?

King: So when I look back, to me it wasn't a question because of our tradition. And that's what a lot of people really don't understand in our ways -- in the native ways. We look back and say okay, our parents, our elders, no matter who they are, they're still your grandma, they're still your grandpa. We take care of them. They're part of your family, even though we're not related by law or anything. They're an elder, they need care. You step up, you do it. My aunt, first, was my mom's older sister and when we were under relocation to Chicago, my aunt and her husband, after World War Two, traveled and he finally got a job and worked in Chicago, so she kind of became our mother also and we became her kids because she didn't have any, and so it had that bond. I remember being young and I told her, “You don't have to worry about a nursing home because I will take care of you. We will take care of you.” And as we got older and I moved back here and I seen her, I decided, “Yes I'm going to take her in.” And by then she was elderly and she had fallen and I took her in. Through those times I kind of noticed changing through her, and I didn't know what it is. She would revert back sometimes to talking about when she was a kid and at times I wish I had a recorder because these were like the early 1900s. I watched her and I sat and I noticed changes in her slowly because she didn't talk much but there was still that change that she did. And finally I asked my mom to come up and help me because she was getting harder and she was starting to lose her functions and that, and my mom came up and she started helping me with her. And it got to the point where we had to put her in a nursing home. And even though she's my aunt, it was the hardest thing I had to do. And I remember my aunt telling me, before all that, that when it comes time for that nursing home, to do it, because it isn't going to matter and her time won't be long, and that I have a life and I need to live that life. And even though I had to sign the papers, it was very hard. And then my mom stayed -- I had her stay with me, I'd say the last twenty years of her life. I watched her too and she would get frustrated and she couldn't remember words or small things and she would just get frustrated and, “Geez. You know I can't remember a simple word.” And I'd calm her down and I would tell her, “Well if it was important, maybe you'll remember it.” And I wouldn't -- I wouldn't get mad I would just look at her like, okay, you know she's getting forgetful and that's the way we get I guess. I don't know. And again I didn't have anybody there to go ask. I'd asked a doctor and that's what he would say, “Well, you know, she's just getting old and she's forgetful.” And I remember I heard about Alzheimer's and I asked him and he said, “No, no, she's just old.” But watching her -- the strong woman all my life, that raised four kids in Chicago on her own -- start going down like that, that was hard. So watching her all those years and then seeing that, and then watching her when I had to put her in a nursing home was, again, back to that again. That's hard to do. I don't care who it is. It's hard to have a parent go in. And we try -- in our way, we try to keep them as long as we can. They took care of us when we were useless -- or not useless but couldn't do nothing. Well now we should return that to them in their life. It's a cycle is what we call it in tradition. And when you look at it, your life -- you're that baby, you need changing, you need this, you need help, 20 years, well there it was 20 years of my mom's life. She needed that help again. I look back on that and I wish you know -- wow, now I understand this. So when this come up and I was asked about this, I was hesitant because I thought of all -- am I going to bring back all that misery and frustration and pain? But then I thought no well, maybe it'll do good because a lot of us here on reservations and tribal people, we don't know that and we don't look at it that way as other people do. And I could see the need there and there was -- funny, because about the same time a distant cousin of mine, he, now he's taking care of his mom and dad and their elder now and that so he started asking me questions on what I did. So I told him so I said, “Wait a minute, I'm coming up with this thing from the university so maybe I should come out of retirement and join in,” and then that way I could help the community better and understand better because at some point there'll be things that will go on and I'll have some answers. I won't have them all, but I'll know something and at least I can direct them in the right place. And so that's what was hard about it being a caretaker, where today I think we have better opportunities. And I get calls and I tell them, “It's not easy to watch your parent deteriorate or go downhill.” Oh, I couldn’t imagine watching Alzheimer's, what I've learned now and how it overtakes them and what they would have to go through as a family. And I said that, I went through very little of it, but I can imagine what it would be like if it really lingered like that.

Chin: Well thank you, Mr. King, for sharing that story and your own personal experience with this condition of dementia and the disease of Alzheimer's disease. You share in there what -- how I would frame as a clinician -- really some of advanced care planning, which to me you give two examples. One of which was your aunt having this foresight to say to you, you know, at some point this might happen and I'm okay with that. Kind of trying to release you of that guilt -- I know you still feel that -- but is that typical for people to talk -- is it just your particular family or is that a part of Native American culture where you would talk about the future that way?

King: That's what we talk about when we were younger.

Chin: Yeah.

King: We talk about death, about not being here because we say the creator or God will come and he'll call you when your time is up. Once you've accomplished everything you're here to be for, he'll call you. And that's what we believe and that's what she was saying at that time. Telling me, “Hey, let me go. It will be alright and you go on with your life because,” she said, “you're young yet.” So yeah that culture plays a big part in, I think, a lot of native lives. But I also look at where I grew up in Chicago and knowing a lot of different other cultures there. So that's right I kind of thought too. I'll be in the program and really looking at it is what studies -- where do we come up? And why do Native Americans get Alzheimer's or dementia sooner? You know, everybody's asking me and I don't really know yet either, but working here I have some answers.

Chin: And Mr King, during your time, though, as a caregiver too, it sounds like there was never really a diagnosis and there wasn't a whole lot of opportunities for you to reach out and ask for help or ask for questions to be answered. Am I right in that, in understanding your story?

King: Yes, just before they passed is when she said they had Alzheimer's, each one of them. Now about a month before they passed they finally said, “Well she has Alzheimer's,” and the same with my mom.

Chin: Okay, and so your experience really -- as you said -- brought you out of retirement and to do the work that you're doing with the research center and engaging with Veterans and American Indians. So how do you feel like that influences the conversations you have when it comes to educating other people about Alzheimer's disease and the research that you're talking about with them?

King: When I did the article in our tribal newspaper and just talking to him -- word of mouth spreads fast among tribal people and now I'm known nationwide. So I could travel like I was on vacation down in New Mexico and I ran into this guy and he's like, “Hey come here you know. I want to talk to you about Alzheimer's, dementia.” Yeah, I was like, “Well how did you hear this?” (laughs) “Well, what's his name told me, and he told him and he…” Yeah because I’m on -- being in the culture, the National Congress of American Indians, that's nationwide. And so they're asking me, “Why can't they bring this to our reservation and teach us so we have an understanding and we know what it's like? And it's not the old person that we thought was crazy.” And that's what they thought, and I'd say, “Yeah, that's all the people said that I remember. Growing up even in the neighborhood, stay away from that couple over there. They're a little bit strange and they're weird, but maybe they had dementia or Alzheimer's when we look at it back then, that far back.” And that's what I felt like well helping educate and bring this out. It's a great thing now and it's helping a lot.

Chin: And it seems like there's a real shift then. People are yearning or wanting this information and wanting to engage when it comes to the difference between normal aging and something like Alzheimer's disease.

King: Yeah, because even with the pamphlets that I hand them from the Alzheimer’s Association, they start reading that and they look and they go, “Wow, yeah, I'm gonna keep this.”

Chin: And then so for both you, Mr King, and then you, Dr Carlsson, what's something you've learned from this experience thus far when it comes to engaging with American Indian Veterans as you discuss Alzheimer's disease research? And I'll start with you Dr. Carlsson.

Carlsson: Well I think as far as what I've learned is -- really a lot of what Mr King has said - that each group of people at each community is really different in their perspective and what they value, what they understand. So working with Veterans from tribal communities is different than working with Veterans from rural areas or working with Veterans from the city. So again, as Mr King has mentioned, people all come with different perspectives and needs, so I think it's really important to recognize. And I think working with Mr King has taught me a lot about tribal communities and chiefly that I don't know very much. So I think I continue to learn from him and I think we recognize the importance of these partnerships to be able to work with people from these communities. I'm really glad that Mr. King brought up all the people who have reached out to him nationwide. I think you had mentioned before someone from California had reached out to you and again running into a colleague from New Mexico walking down the street. I think that really speaks to the tightness of the communities in being able to want information from people within their community, so that’s really important. And then again with Veterans, I think, recognizing that Veterans really want to help other Veterans and so, learning from them -- that there is pride in their time in the service, within their specific branch of the service they were in. There's a camaraderie that I think those of us who are not Veterans don't understand fully. So I think being able to recognize what motivates people, what they need as a community, is really important. So again, I think, within Alzheimer's disease research in particular because -- as Mr King mentioned -- a lot of people will think, well this person they might be viewed as being crazy or dumb and that's not the case at all. We really need to think about how we shape our discussions in the clinical setting and the research setting so that we can, again, really identify what are these key early markers of the dementia process and help people from these unique communities identify those changes so we can really help do all we can to protect their memory.

Chin: Thank you, Dr. Carlsson. And for you, Mr. King, I'm going to flip the question a little bit. In your time reaching out to and educating these potential research participants, what have they taught you? What have you learned from your interactions so far?

King: A lot of that, it was all new. And it was -- it's just learning about the medical part and all this other stuff that goes on that we don't understand. And we don't know because a lot of the tribes at times feel like, “Oh yeah, they're here to research. Why? They're gonna sell it. Our mind, our thoughts, our bodies are not for sale.” So they kind of reject any kind of research and because they -- we felt like we've been enough, researched enough through anthropology and all this. So when something like this comes up and say if Dr. Carlsson or some other workers that came here and said, “Oh I'm doing Alzheimer's, dementia, and Veterans,” they would be like, “Yeah. Okay so?” and walk away. They wouldn't want nothing to do with it. Being a part of this and seeing that, I thought, hey this is a good step and it's something that I would have liked to know myself to help me. In order for that, we gotta break those cultural barriers and allow some of that to understand, for us as people, because our culture is passed on to us for years. Not only know education but it's also - you got to understand the culture, got to understand the people. Because a lot of people here say, “Yeah we see our people go away and they get educated but they come back and they forget about what they should know about the common.” And we say the common sense when you put them together, that and education. Now you got something you just can't have education because then we lose you.

Chin: So Mr King, to end, what would you like our listeners to know? Those that might be interested in engaging in research particularly those that are either Veteran or American Indian, what message would you like to share with them?

King: I would like to share to look back and to do your research. It's never too late to understand things. And that's what I do, even now, when I tell people, “Your parents are getting old. Maybe you better settle things now. Ask them how they want to be buried. Do they want to be…” Oh I don't want to hear that. No, you have to. That prevents a lot of things from happening down the road which we did. And that's why I feel my aunt and my mom tell me those things and talk to my sisters and brothers so there is no arguments between anybody. This is what they want, so this is what they're going to get. So I encourage people, yeah, find out about Alzheimer's and dementia. There's nothing wrong -- I don't care if you're 20 years old, find out. Be prepared so you don't have to put all this stress on yourself and that you know that this is a part of it and this is certain steps and here's the help that you could get by calling or having this pamphlet. And that's what I like about referring people. I don't know everything. They can probably help you a little more, but on the cultural end as your nation, bring it up. Talk to your tribe. Talk to your elders. Maybe they have something back there that they knew way back then that we don't know now. And it's all new and that's amazing, so that's why I would encourage people to research everything, find out and learn. Never stop learning.

Chin: And thank you Mr. King. That's a great message. For you, Dr. Carlsson, what have you learned in this research in engaging with an underserved population, both Veteran and American Indian. What needs to happen in our research field in order to do more of this and to do a better job?

Carlsson: Well I think in order to do a better job we need to make sure that the research that we're doing includes people who are at highest risk for this disease. So there have been some unfortunate examples recently, even the approval of this new medication for treating Alzheimer's disease. That study was done chiefly on white upper-middle class individuals with low amounts of other medical problems, so other things like high blood pressure, high cholesterol. We need to have studies that include people who are from diverse backgrounds, so we need American Indians. We need Latinx. We need African Americans. We need people who have been in the service and people who haven't been in the service. We need to be able to have people in these studies who are the ones who are at risk for dementia so that we can make sure that treatments and the things that we're doing really reflect the best way to treat people and make sure that everyone's safe in the treatments we offer them. I think as far as next steps our field needs to make sure that we include research participants who are from diverse communities but also researchers who are from diverse communities and scientists are asking these kinds of questions. And then just making sure that we're willing to learn as scientists so that we can make sure that people feel welcomed into these studies and that they're willing to engage and invest in them for the long run too and bring that back to their communities.

Chin: And really with that, you know, I'd like to thank both of you for being on the podcast today and really sharing -- Mr King sharing your personal story and Dr Carlsson sharing your experience and engaging with these important populations and I do hope to have you both on in the future. So thank you.

King: Thank you for having me.

Carlsson: Thank you so much Dr. Chin.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing.

Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers.

This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions.

To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.