Accessibility and Community: Bringing Alzheimer’s and Dementia Resources to the Latinx Community

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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. I'm very excited to have with me Dr. Maria Mora Pinzon, a physician scientist with a background in health services research, health equity research, and preventative medicine at the University of Wisconsin School of Medicine and Public Health. Through her work, she aims to improve healthcare access for people in Latinx and African-American communities. In 2021, she worked with Us Against Alzheimer's on the Spanish Language Brain Guide, a free online resource people can use to manage their own or a loved one's brain health. Dr. Mora Pinzon, welcome to Dementia Matters.

Dr. Maria Mora Pinzon: Thank you so much for having me.

Chin: Let me start by asking you more about yourself before we get into this brain guide which is phenomenal. How did you get into this field of an aging population and people living with dementia?

Pinzon: That's a great question. After I finished my residency in preventive medicine, I started working in aging, particularly in how to disseminate evidence-based programs among older adults. Things that I knew by then -- many of the programs and resources that we have available are not available in Spanish, or they have never been proven in Spanish, or even worse they have never been done outside of an academic setting. So my work was like how do we get this to the masses? How do we get the things that we know work for health, for the people? Then in that field I started learning more, I actually - and I will start with my own misconception - I came to the field thinking, “Latinos, we do not get Alzheimer's.” And I went to one conference and was like, “Oh, not only was I wrong, I was very wrong.” Latinos are 1.5 times more likely to develop Alzheimer's disease, but we don't talk about it. I started going into that route like, I am a physician. I've been trained in prevention. I've been trained in different and very general aspects, and I didn't know this. What about everybody else? How many times we have had a family member - my grandma and aunt, oh they are getting old - and just disregarding things that we can do something about because of our misconceptions. So, that's how I started working on dementia. And I like to say, aging and dementia are so related. And then I remember, somebody told me it’s that you’re getting old but people think that you have everything figured out and that's never the case. There's not a manual that you get when you turn 60 or 65 saying this is how you're going to get old. So there's a lot of things that we don't know and my work is how to make sure that no matter where you are, no matter who you are, you can get access to the best information possible.

Chin: Well, that was so much in there that I want to ask you about, Maria. So first of all, you're right, we don't have a guide for what does it mean to get older. And I tell you I would love to be a part of creating that guide and then certainly having it in all the different languages because you're absolutely right. But the second thing, really what you touched on, what you've learned through your training and education, there’s three important things I just took away from that. One: there aren't studies really being done or targeted for Latinx individuals. Two: if they are being done, it’s really not outside of an academic center. It's not in what we would consider ‘the community’. And then three, how the heck do we disseminate this information once we've learned it? So you have a big challenge in front of you. We all do, but that seems like there's a lot that needs to be understood and then done.

Pinzon: Yes, and they are very close together. I think that's one of the things that I'm very grateful for my mentors in my work, that I've been able to see the connections. So between those three aspects, and by addressing one, I'm trying to make sure that the other two are better. I'll just give you an example. We design - we have a program or you have a best intervention or a treatment. If from the beginning you don't know if it's going to be acceptable and useful for Latino communities, there's no way to disseminate it at the end. But at the same time if it is acceptable and useful, but it requires 50 nurses, 33 hours, and a million dollars, it's not going to get disseminated either. So thinking about that end user from the beginning. From the moment that we're doing the study, is this gonna work when it's applied this way? Instead of the 33 nurses, we have just one, is it gonna work? If we use it in the way that's going to be used in the community, in the senior center, in the clinic, is it going to work the same way? And that's why I think I like - but as you said this - a lot of things packed in there because it's not only, “Oh, does this work?” No, it’s, “Does this work? Can it be used? Do we have the stuff? Do we have the resources?” But I think the more I learn and the more I do, the more people are interested in hearing about it. And I think many times I heard, “Oh, Latinos are not interested in research,” or “Latinos are not interested in dementia.” That's not necessarily true. It depends who is asking and how they are asking.

Chin: Such a good point and something we all need to take in mind here. I would, you know, one of the things you said in your introduction, too, is just this lack of awareness that Latinx individuals are at higher risk for developing dementia. And so I guess one of my first questions is the idea of Alzheimer's disease and dementia, is that something that's discussed in general, in a family setting, in a community of Latinx individuals? Is that - or is that really not something that people think of?

Pinzon: People don't think about that. I can tell you, I have only two in my mind, two representations in the media of what's that. And one is the movie Coco from Disney that was released a few years ago. That's the only thing that I will say. We talk about getting old; we talk about when people need a lot of care. But otherwise we don't talk about the terms. We talk about, “Hey, my mom is getting old. This is my responsibility to take care of her.” We never said the word dementia. We never said cognitive problems. We just assumed they're getting old, this is going to happen eventually. So we don't talk about it. We suffer the consequences. We address them. But then, many many - because it's assumed to be a responsibility, then a lot of people don't ask for help because they say this is my burden. This is my job. I'm the oldest daughter or they are the youngest daughter, or this is what I have to do in my family.

Chin: And then you mentioned a very important fact, which is that Latinx individuals are at a 1.5 times increased risk for developing dementia. Is there research that can explain this higher risk?

Pinzon: There's some. We know that we have higher prevalence of certain chronic conditions, but also less likely to have it well-treated. I think there's a little bit of research in that field that vascular dementia and in all the vascular factors, we are more likely to develop those. And I think that's also one of the things that in my early training, it was not clear. A lot of people die young before they start showing the symptoms of dementia. A lot of people have a heart attack, a stroke, so we assume the symptoms are due to the stroke and the vascular things but they might have already had symptoms of dementia. We were just never paying attention. Other things that we know about the risk - literacy. We know about the protective factors. Latinos are - particularly in the US - are less likely to have access to those protective factors. Just finishing high school, I think, just thinking about that metric, about 54% of Latinos have at least a high school degree. And when you look at the general US population, it’s about 36%. And that the years of education, we think about the access to additional resources for hearing aids - just as simple as that. All of those protective things are less likely to happen in the Latino community.

Chin: So you're really speaking to this concept of social determinants of health, not just disease but access to care, access to information, access to a hearing aid. I mean, I think that's a profound thing to say. And that's something that can be addressed though, when we think about it - we don't have a cure for Alzheimer's disease but certainly we can work to improve access for all individuals. Well I now want to get to one of the amazing things that you've done recently. So earlier this year, Us Against Alzheimer's released its Spanish Language Brain Guide, which is this online tool that allows people to take a memory questionnaire and receive a list of tailored resources based on those answers. So you are a consultant and a spokesperson for this website and rollout. Can you tell us about the tool, some of the resources it offers, and why it is so important to make it available to Spanish speakers?

Pinzon: Yeah! One thing I love about Brain Guide is that this platform is in both languages. It's in English and Spanish, and it's designed for everybody. That's something that I really, really appreciate. Many times we hear, “Oh, we have this resource available in English. We'll come back in Spanish eventually, soon.” But Brain Guide, from the moment it was launched, it was launched fully bilingual. That, for me, was very powerful and one of the reasons why I said, “Yes, let me help you. I want to work with you.” And it includes - the most important part of this is the questionnaire. They have a questionnaire that you can fill out over the phone or even on the website - eight questions. You say, “Do I need to talk to somebody about this? Is what - the things that I'm feeling for me or I'm seeing in my family member - is this something that should worry me or is this just normal?” It’s not dementia - it's not a diagnosis of dementia. It is not going to tell you you have dementia, but at least they will say, “You know what, it might be good that you talk to your doctor about this.” And they send you resources or links to information like, “Here, this is a couple things that you can tell your doctor that you were concerned about.” But also for caregivers, let's say if you already have a family member or a loved one that has dementia but you would like to learn more about the disease or learn more about resources in your community, learn more about things that you could do as a caregiver - they have all that information available. The website is very easy to navigate; it doesn't track any information. It's not like, “Oh, you need to sign in for your password and login now.” No, all the information is available and they have many, many resources for anybody that's looking for information. And it is something that when they tell me, “We will have the questionnaire available over the phone,” I say, “That's amazing. That's great. I love it.” And that's been one of the tools that the - at least in Spanish - has been used the most. People calling over the phone, answering the questions like, mark one, mark two. That has been very useful to increase accessibility. A lot of people are afraid of using devices to fill out questionnaires or they might not have enough bandwidth - it’s not fast enough - so just having it over the phone so everybody could call and then they say, “Hey, do you, will you like more information. Would you like us to send a text message?” And they send you a text message with additional resources that you can look at later. That, for me, is very powerful for getting to where the people are and giving the information in the language that they prefer.

Chin: That's amazing - so practical, but so helpful! And now I'm going to make it harder on you, because I don't want you to use that as an answer for my next question, which is really - in this amazing experience, can you tell us something that surprised you that you learned, something that you weren't anticipating?

Pinzon: Something that I was not anticipating... the response from the communities. When they launched, of course, they do a media campaign reaching out to different sources. I think I was surprised at the number of TV stations, radio stations, and other people that say, “I didn’t know about this. This is so important for my community.” And everybody that I spoke with in this process said, “I have a family member that I didn't know might be suffering from this.” Everybody. So it’s something that a lot of people don't want to talk about, but it's happening - affecting a great majority of us in one way and another. Maybe it’s not mom or dad, but maybe an aunt, maybe a godfather, might be a brother or a cousin. So that surprised me that everybody had a story to tell.

Chin: That's amazing. And for our listeners or those who are visiting our website, we're going to have Brain Guide, the website, listed for you as well, but it seems you could also google Brain Guide. Now you were also named a Wisconsin Alzheimer's Disease Research Center Research Education Component Scholar. They call that a REC scholar. And through this program, you will be exploring ways to increase Latinx participation in Alzheimer's disease and related dementia research through a community based approach. So, to begin, what are the barriers right now that Latinx people face in learning about brain health, dementia, and getting involved in research?

Pinzon: That's an extremely good question. I'll say it depends a lot on where you are located. For example, here in Wisconsin one of the main barriers that I hear over and over again is language. “Hey I go to the doctor and yes their interpreter is there but we don't have enough time to really - for me to ask all the questions.” Or, “I'm looking for extra resources so the doctor gave me this patient information and everything is in English. I don't know how to read this.” Just as simple as that. And think about many research studies knowing that they say, we only recruit people that speak English because we don't have the staff or the resources to get all the information in Spanish. Already there, even if somebody wants to participate in research  they feel stumped, they don't know how to get forward. In my studies when I recruit I - just something as simple as the voicemail. My voicemail is in English and people are afraid of leaving a voicemail. They don't know if they're calling the right person. Just that simple fact. I know - but when I see a number that I don't know I call back, always, because I don't know if it's somebody that's interested in  participating in my research. That is just that my voicemail was not friendly to them. I changed that now but still. It's just that very simple barrier. Then we have things like when people hear research, they think it's going to be trying a new medication or taking blood work and there's so many types of research that - and everybody when I say, “Hey this is what I'm doing and this is what I hope to learn,” ninety percent of the time they say, “I'd want to do it.” Ninety percent of the time, the other ten percent say, “I wish I could do it but I don't have that time,” or “I'm working that day.” One project I have is doing interviews, somebody said, “I don't have access to unlimited minutes. And I don't have a landline. I cannot do this interview over the phone.” And then I was like, “How do I address this? Short of sending them a new phone? There's - I cannot do it.” And the way the COVID-19 pandemic is like, all of the other priorities, all of the other things people that is facing, those are barriers that are very unique to each community. If you are in California, Texas, or maybe Florida - okay, maybe the access to the language is not an issue but they might be who is asking. Do the people trust you? Do they know that you have good intentions or do they feel that they're going to be used for that research project and never go back to information? They want to know what people learn about that in that research.

Chin: I mean that is so much information, Maria, and one - I really appreciate just even the explanation of it depends on where you are, because so often you know we try not to group and lump people together and make over-generalizations. But when we talk about the Latinx community, well it depends on where you are and what issues are facing that particular community. And so you can't apply one strategy to all people. Even if it's within a certain group of people of color, you actually have to know the community. Wow and that story about the minutes, I mean, that's something how would you - how would you know that? Or the voicemail, and not know - did someone tell you that or how did you learn that?

Pinzon: I saw there was a number that they kept calling, and this was early when I started recruiting for a study, and I was - I have four phone calls from this number. I called back and then they said, “Oh I didn't know if I was calling the right person.” So then it clicked and then I changed also and then I now, most of the time, tell me when I call you and I can call you, we can talk about this. So this is different, but even in that case, many people are never going to answer to a number that they don't know. So that's why I say, here's the number. You can save it in your phone. I will call you from this number.

Chin: Wow. And that leads me to - I mean you've identified some really key barriers and this is a big broad question - but what is needed to engage the Latinx community if you're a researcher? Or what kind of strategies would you suggest to people who are in research that want to include people in the Latinx community in their studies?

Pinzon: The first thing is they need to get out of the research center. They need to have their face but this is not just like, “Oh yeah I have 25 different billboards in the city.” No. They need to go where people are and they need to know the people. They need to get engaged in things that are not related to the research. Simple as, “Oh I'm doing research in health.” Well, there's three health firms that you can collaborate, contribute either time, effort, or money. Be there. That's the first thing to - one it will help understand what are the needs. What are the barriers that people are experiencing? But also, is this where - whatever I'm researching, is this something that's a priority or a need in the community? I've seen people like, “Oh we are using an app and we are developing this app and we want people to tell us if it works.” It's like, okay we are already starting at the wrong point. The app is not going to work. We know that in particular for seniors they are not going to download the app. The Latino seniors, for a study, we give them tablets and we have to give them detailed instructions and already everything set up for them to use them, and even there they are afraid. Many times I had ended up calling like, “Okay, it's fine. You can click in the button that says okay. It’s okay, it's not going to mess up everything.” So just think about if somebody doesn't know the community where they're working or how can they make sure that whatever the research is being done is going to be helpful.

Chin: And then when you think about education and raising awareness in the Latinx community, are there specific topics that you think are most important to them right now?

Pinzon: There's a couple things that come to my mind in education. Number one, we need to think about the families and the younger generation. They are a very good point of entry. And think about this, we have very close family units. If you teach a teenager, if you teach somebody in college, if you teach somebody in high school, about these things they will bring that information to the families and eventually sooner rather than later they will have - they will even feel that responsibility coming to themselves so they - but at least they know that, hey there's help out there. So that's a group where the education and awareness is specific about you might not be suffering from this but this is coming in a family member, so they know where to ask questions in the future. And for the older - the adults and I say in the closer middle age to closer older adults that one of the things to raise awareness is about is the burden to the families. Nobody wants to be a burden. Nobody wants to be dependent. But it's about telling them, this is one of the things that - there's things that we can do so that you can keep helping your family and that you can still be there for them and never be a burden or at least be in the best shape that you can be. That is a powerful message and a lot of people have responded very well when talking about this.

Chin: And so Maria for my last question for you, which is one I like to ask all of my guests, especially someone in preventative Medicine, a preventative medicine physician. What do you do in your own personal life to keep your brain healthy?

Pinzon: That's a very good question. I like to say always, what's good for the heart is good for the brain. So every time that - even if I don't want it but my partner says, “Let's go for a walk,” it’s like, okay, fine if that's good for my brain. I need to think about the future. But something that - for keeping the brain healthy, being curious. I keep learning, keep reading, keep learning something new and try to always make sure that I do not stay comfortable. I always challenge my brain and my activities in some way and another.

Chin: Keep curious. I like that. That's very catchy. Well, thank you Dr. Maria Mora Pinzon on being on Dementia Matters today and really discussing such a critical topic. I do hope that we can have you on as you have more research data piling in from your study and any way that we can help, please reach out to us.

Pinzon: Thank you so much for having me.

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.