Thursday is World Alzheimer’s Day. The disease is the most common form of dementia, which covers a group of symptoms related to memory loss and cognitive decline.
Some research has shown that Native Americans are more likely to develop dementia than the general population. And they face barriers to effective care and diagnosis. A team of researchers at the University of Minnesota is partnering with tribal nations to improve treatment and support caregivers.
MPR News host Cathy Wurzer spoke about this effort with Jordan Lewis, associate director of Memory Keepers Medical Discovery Team, and January Johnson, a community-based researcher with Red Lake Nation.
Note: This audio has been corrected from the live version to accurately state Jordan Lewis’ name.
Use the audio player above to listen to the full conversation.
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A team of researchers at the University of Minnesota is partnering with several tribal nations to improve treatment and quality of life for caregivers. Joining us to talk about this effort is Jordan Lewis, associate director of Memory Keepers Medical Discovery Team, and January Johnson, a community-based researcher with the Red Lake Nation. Really a pleasure having you both here. Thank you, Jordan and January. Welcome.
JORDAN LEWIS: Thank you.
JANUARY JOHNSON: Thanks.
JORDAN LEWIS: Pleasure to be here.
JANUARY JOHNSON: Glad to be here.
CATHY WURZER: Jordan, I'm going to start with you. What are some of the unique challenges facing Native American communities when it comes to dementia?
JORDAN LEWIS: Yeah. So I would say, based on our research and what we've explored so far, some of the unique barriers, of course, being, given the mistrust in the health care system over generations of unethical research, resulting in some of those challenges in getting people to go in to seek a diagnosis, to get more insight on, what is cognitive health? What are some of these memory changes they may be experiencing?
Another big barrier or challenge is the lack of culturally sensitive, culturally safe cognitive assessment tools that are appropriate for American Indian, Alaska Native communities. Those, I would say, are the top two. And I could, if it's OK, ask January to give more insight from the community perspective.
CATHY WURZER: Right. January, what about that?
JANUARY JOHNSON: Yes. Happy to do so. So I believe mistrust within the health care system stems from the historical traumas of our people that were faced during the colonial genocide and boarding school era. Indigenous people have been treated poorly by the government ever since. And the trauma that our ancestors endured caused chronic stress, which then altered the DNA they had passed down to our grandparents and parents.
That change in our DNA wired us to release more of that stress hormone, cortisol, more than we did in the past. So when the brain and body is exposed to those high levels of cortisol constantly, it becomes damaged over time. We become susceptible to cancers, high blood pressure, insulin resistance, obesity, which then puts us at a greater risk of developing diabetes, stroke, hypertension, heart disease. And currently, within our Indigenous populations, people do have high rates of diabetes and heart disease co-occurring at the same time.
CATHY WURZER: And we should say that there is this link, a potential link between diabetes and dementia, right?
JANUARY JOHNSON: Absolutely. Yep. So with diabetes, if it's poorly managed throughout the course of their disease, it could put them at risk for developing a dementia. But that doesn't necessarily mean that someone with diabetes is going to develop dementia.
CATHY WURZER: Right. Right. But there are high levels of diabetes in Native American communities, and heart disease as well. You know, I'm wondering here, dementia-- and you both know this. There's a lot of stigma around dementia, right? It's tough to talk about. So January, how do you approach these conversations in your communities?
JANUARY JOHNSON: Well, I think the best way to go about it is educating and just giving our people a safe space to come and talk with us. And then there, in turn, we'll be better able to answer some of the questions they may have for us, and then really, in turn, just listening and gaining their perspective and learning what their needs and wants are and their experiences with dementia and being a caregiver for someone, one of their loved ones with dementia.
CATHY WURZER: Jordan, what is the Memory Keepers Team doing right now to try to improve treatment?
JORDAN LEWIS: Yeah. So Memory Keepers Medical Discovery Team, we are-- our executive director, Dr. Kristen Jacklin, and her team have secured funding from the National Institute on Aging, which is part of the National Institute on Health, for a project called AMICA, which is the American Indigenous Cognitive Assessment. And it's a multisite project looking at culturally adapting cognitive assessment tools and caregiver tools to be culturally safe for American Indian communities.
It's a very large project. Started about a year ago, so it's very early in the stages. But very exciting work that's building upon Dr. Jacklin's work they've done in Canada with First Nations people. And it's been a partnership through some of the work done in Australia as well.
CATHY WURZER: Is that part of something called-- and you both can help me out here-- Two-Eyed Seeing? Can you talk about what that means in the context of care?
JORDAN LEWIS: Yeah. I can answer. And then, if January has anything to add-- so the idea of Two-Eyed Seeing is, in the work that we do, we value both perspectives, the Indigenous perspective as well as the Western perspective. And each of those perspectives are on equal level. No one is more important than the other. And how do we culturally intertwine those together, recognizing both have equal value and contribution to the science that we're doing?
CATHY WURZER: Mm-hmm. January, do you want to make a comment about that?
JANUARY JOHNSON: Yeah. Absolutely. So it is a strength-based approach. And we do incorporate that Two-Eyed Seeing model when analyzing the data, which allows us, like Jordan said, a view of things from both a Westernized and Indigenous point of view in order to capture the significance of the local knowledge shared with us.
CATHY WURZER: Say, a lot of this is very, very important, especially when it comes to-- and January, this question is for you. Because Indigenous elders hold so much important knowledge about language and traditions, dealing with memory loss has to be really tough in these communities. How do you work with that?
JANUARY JOHNSON: Well, I think it's important that we make sure that we honor our cultural traditions and beliefs and taking care of our elders and respecting them and really listening to them when they share that knowledge with us.
CATHY WURZER: Mm-hmm. Quick question here because I have about a minute left. Jordan, are there lessons in this effort that can be applied to other health issues that affect Native people?
JORDAN LEWIS: Yeah. I would say the number one lesson we've learned but also would love others to learn from the work that we're doing is the incredible value community brings to the work that we do-- our unique model of our center not only using team science but having community members be part of the research team. They assist us through all aspects of our work.
And their insight and their value and their cultural groundings bring such an important perspective, like January said, a very strength-based, helping us develop culturally safe outcomes in our work. And so I would say that's really important, that we encourage people to engage with their communities, learn what their priorities and needs are, and build upon those strengths that exist in their community.
CATHY WURZER: All right. I appreciate your time, both of you. Thank you so much.
JORDAN LEWIS: Thank you.
JANUARY JOHNSON: Thank you.
CATHY WURZER: Jordan Lewis, associate director of Memory Keepers Medical Discovery Team. January Johnson is a community-based researcher on the team, who works with the Red Lake Nation.
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