Considerations for Caregivers in Indian Country

Dr. J. Neil Henderson is an expert on diabetes and dementia, as well as creating culturally specific caregiver training programs for people who care for American Indian elders. Dr. Henderson, who is Oklahoma Choctaw, discusses cultural influences on caregiving and his work in improving brain health among American Indians and rural populations. Guest: J. Neil Henderson, PhD, professor, University of Minnesota School of Medicine, Duluth campus; executive director, Memory Keepers Medical Discovery Team on Health Disparities

Show Notes:

  • Trainable caregiving skills: 1:07

  • Impact of culture on caregiving: 6:29

  • American Indian and rural health disparities in memory: 10:35

 

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doctor neil henderson
Dr. J. Neil Henderson

Show Notes

J. Neil Henderson, PhD, is the executive director of the Memory Keepers Medical Discovery Team. Visit them online to learn about the team's work in understanding the dynamics of diabetes and dementia as interacting conditions among people living in tribal and rural communities.

In the podcast interview, Dr. Henderson and Dr. Chin discuss "The Savvy Caregiver in Indian Country" trainer's manual, which can be found online through the National Indian Council on Aging website.

Dr. Henderson offered the keynote address "Diabetes and Dementia among American Indians: Connections and Prevention " at the 2019 Wisconsin Alzheimer's Disease Research Center Fall Lecture. Watch a video of his lecture on the Wisconsin ADRC YouTube channel.

Transcript

Introduction: Welcome to "Dementia Matters," a podcast presented by the Wisconsin Alzheimer's Disease Research Center. Our podcast is here to educate you on the latest research, caregiver strategies, and available resources for fighting back against Alzheimer's disease. I'm your host Nathaniel Chin. Thanks for joining us.

Nathaniel Chin: Today on "Dementia Matters," we are honored to have guest Dr. Neil Henderson. Dr. Henderson is a medical anthropologist, an expert in diabetes and dementia among American Indian people, and a caregiver trainer. After working as a dementia and diabetes researcher at the University of South Florida and the University of Oklahoma, Dr. Henderson moved to the University of Minnesota School of Medicine's Duluth campus, where he is the executive director of the Memory Keepers Medical Discovery Team on Health Disparities. This team is focused on ending American Indian and rural health disparities. Dr. Henderson, welcome to "Dementia Matters."

J. Neil Henderson: Thank you, Dr. Chin, I'm very glad to be here.

Nathaniel Chin: Now, in addition to your research in the biological side of dementia, you are also an expert in caregiver training and the author of a training manual titled “The Savvy Caregiver in Indian Country.” Some people may see caregiving as a natural intuitive role, but there are trainable learned aspects to this role that can help improve life for both the person with dementia and a caregiver. So what are some of the trainable caregivers skills and strategies that you teach?

J. Neil Henderson: “The Savvy Caregiver for Indian Country” is a descendant of an original earlier manual called “The Savvy Caregiver.” And Dr. Ken Hepburn led a team in, actually it was in Minneapolis many years ago. And so it was a class for caregivers, to in six two-hour lessons. Learn how to bring about what he called contented involvement in the effected person that had some kind of cognitive impairment. And he's very realistic. It's not that you can just convert the person's confusion and angst and anxieties and things of that sort into this really mellow condition. That's not it. But it is to increase the number of times and the amount of time that the affected person might feel secure, feel safe, feel loved — that's contented — and to not be just a lump over in the corner of the room, but to have some involvement with people around them, even if the effected person didn't fully understand what was going on. And the theme here is that the caregiver needs to learn how to interact with the affected person in ways that don't overstimulate them. Because if you give them too much information, if there's too much active noise around and too much activity around and you're asking them to do things or are forecasting: Well in 30 minutes we're going to stand you up; we're going to walk to the bathroom and we're going to get you undressed; we're going to give you a shower. That is likely to produce some agitation in some stages of this. So the idea is to teach them to stage the progression — the cognitive decline in the person — and have their caregiving techniques match that stage. And in the manual, this is all spelled out. Through a grant from the National Indian Council on Aging and what used to be called the Administration on Aging, now the Administration on Community Living, I led a panel of people to indigenize “The Savvy Caregiver” that was made in an urban setting and with a non-Indian population. And so the outcome of that is that each of the six lessons has for the caregiver trainer — that's imagine that trainer is in someone's home, they're sitting at their kitchen table — the caregiver has a manual and the trainer has a manual. So it's not like you've got to memorize anything, it's just you're being guided through this manual. And the trainer is given some ideas at the front of each lesson about how to make this fit their local community. So is your community a multi-part community such as, for example, Laguna Pueblo, west of Albuquerque, about 45, 60 miles, is actually made up of several different areas that constitutes Laguna Pueblo. And depending on whether a family is one community or another community that may make a difference of who they're related to and who their caregiver resource bank could include or not include. It includes things for the caregiver to say to themselves, you know, elders across Indian Country are really given high esteem and honor. And so as a caregiver, if I get tired and burned out, well I shouldn't feel that way. I owe this elder everything I've got. And part of it then is to give that caregiver permission to take a break. That yes, honoring the elder is an important thing and for  you to sustain your ability to do this over probably a few years of time is another way of honoring them. And then last just as one other example of how it was indigenized and that is to think of caregiving as an actual ritual of honoring the elder. That what we think is caregiving tasks become symbolically important tasks assisting them as they walk toward the other side. A lot of these kinds of facets of social and cultural psychological meaning I have a not heard in Anglo support groups. And so that was a part of how we then develop this Savvy Caregiver in Indian Country approach.

Nathaniel Chin: What are some of the other ways in which culture, as you're speaking to it, has an influence in the way people talk about dementia or approach caregiving, as a community even?

J. Neil Henderson: There are going to be a variety of ways across different tribes from coast to coast, North to South and Alaska natives, as well of course. And one of these, let me give two examples. One of these comes from my tribe, Oklahoma Choctaw tribe. And it was a woman who had both diabetes and dementia. At the point in time that we're talking about it, she was bedfast, she had a below the knee amputation due to the diabetes, and she was probably with regard to cognitive status was in a mid to lower mid-range, so significantly impaired and yet able to feed herself if someone provided food, able to be aware of other people around her, and those kinds of things. But, a standout feature at the time that I was around this family was that in medical terminology she would be having hallucinations. But the family, in particular one of the granddaughters specifically, said to me, you know, pokni, which is the Choctaw word for grandmother, pokni sees things we don't. Now think about that. She didn't say she sees things that aren't there. She did not say that. It was, she sees things that we don't. And in fact, the idea was here that people around her that were lucid were observing her communication to people on the other side, even though she had not yet gone there. She would talk about and name people, relatives that had walked on before, even favorite horses and favorite dogs, talk about the garden. And so the lucid people hearing these comments derived from that a sense that there really is this other side. Number two, there are people that we will know and recognize over there and it will look kind of like what's going on now. And so in some ways there was a little bit of positive honor brought to that household into that elder at that time, completely different than a strictly pathological tragic decline in brain power and brain function. So that's one. Then I'd like to mention another one that comes from the associate director of Memory Keepers Medical Discovery Team. And that is Dr. Kristen Jacklin, who with her team, Dr. Wayne Warry, Dr. Melissa Blind and others in Southern Ontario, had likewise looked into how First Nations people think about and define a dementia. And so they were working on a poster to develop that could be put in tribal offices and healthcare programs to alert people, to sensitize people, to dementia and then next what to do about it in terms of caregiving. And they had come up with kind of a pebble lined path that started out in the early stages of the impairment wide and it gotten narrower over time. One of the Native Knowledge Keepers there said just the opposite — it expands over time. And as we're medically thinking about all of these signs that we can talk about of worsening, they are talking about more and more life experience of a different nature that we can't even imagine that they have. So those are two examples of how cultural factors, and this could be not just American Indian people alone, but any culture group.

Nathaniel Chin: You mentioned Memory Keepers, and you are the executive director of the Memory Keepers team. And you are focused on ending American Indian rural health disparities. And so I'm hoping we can end our interview by having you explain to us what are these disparities that we should know, and how are you approaching them.

J. Neil Henderson: First of all, I would like for you to wish me a whole lot of luck about ending these things. It's quite a task. So health disparities, this simply means that there diseases and conditions are not evenly distributed across the population. And there are many reasons for that, one of which has to do with issues related to socioeconomic status. Issues related to actual geographic location. And so for American Indians, for example, with diabetes being about three times higher than other populations, the question is, so why is that? Most of the explanation for that high prevalence comes out of social determinants of health — relatively low income, relatively low education, relatively isolated living conditions. Although let me quickly state that recent census information shows a little more than half the native people in America live in urban areas. Nonetheless, there are reservations that are in more remote areas too. And access to health care then is not quite as easy as it might've been if you just drive or take a bus down to a clinic. The psychological stress of those factors, I’ll put it this way, less ability to keep up with the majority population in money, in education, in a lifestyle that doesn't involve quite as much toxic stress, those kinds of things, add up to poor food choices, inability to get to good food, and affordability of good food. Occupations that are high-risk for physical injury, then you get injured and then you have money problems … it's a set of compounding factors that produce these health disparities. Well, the reason I asked for some good luck on trying to deal with this thing is that many of those originating forces causing the health disparities are way beyond my control or any individual's control in that they lie in the foundations of the economic system of this country, how the economic system distributes money on evenly, and you can imagine that there's all kinds of politics built into this and that is quite correct. I might cite the Nobel Prize-winning economist Joseph Stiglitz that says we do know how to end poverty, we're just not willing to do it. Because it would require a significant amount of redistribution of wealth, and that's just not going to happen. So what we find ourselves doing is that those distal causations, those foundational economic forces we can't budge, cause us to move to the more intermediate or the more proximate kinds of things that we feel like we can at least make some difference in. One of those his health status, and that means functional status, that more people would be able to have a longer high functioning life with complete brain function as long as possible.

Nathaniel Chin: And that itself seems to be a worthy goal. 

J. Neil Henderson: It is a worthy goal. And we are addressing this kind of like a game of inches, one small step at a time and a few tribes at a time. We are looking at not just that we could improve blood sugar values or cognitive assessment values, but also from what we learn, what might these translate into regarding policies, policy changes in the healthcare system. And then we might have a chance to expand our footprint with regard to addressing health disparities.

Nathaniel Chin: Well, thank you for doing what you're doing, Dr. Henderson.

J. Neil Henderson: You're welcome. And I'm glad to glad to be a part of it.

Nathaniel Chin: And with that, I would like to end "Dementia Matters" and welcome you back again in the future.

J. Neil Henderson: Oh, thank you. I'd love to do that.

Closing statement: "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 was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.