Visions common among healthy Ojibwe elders, UMN study finds

CATHY WURZER: Those of us who've had a loved one suffer with dementia know they can have delusions or hallucinations. That's one of the hallmarks of a specific type of dementia called Lewy body dementia. But the University of Minnesota finds a fascinating discovery, that visions of the non-physical world are common among cognitively healthy Ojibwe elders. What might that information mean in the context of researching dementia and hallucinations?

The lead author of the study is Dr. Will Mantyh, a dementia focused neurologist at the medical school at the U of M and M Health Fairview. The co-author is Anna Marie Hill, who is an enrolled member of the Red Lake Nation. Dr. Mantyh and Ms. Hill, welcome to the program.

WILLIAM MANTYH: Thank you. It's great to be here.

ANNA MARIE HILL: Yes, it's good to be here.

CATHY WURZER: Thanks for being with us. This is, I understand, a first of its kind study. And there's always a backstory to any medical study. Doctor, what was the spark for this research?

WILLIAM MANTYH: Yeah, I think going through my training, I realized that there was a huge underrepresentation of American Indian-- sorry, American Indian individuals from dementia research. And at the time of us launching this research to give you a number, there were two out of a total of 40,000 American Indian individuals who were participating in dementia research in the United States. So two out of a total of 40,000 in the general US population.

So that really struck me, and I think it was a call to action to try to make a difference. And I was very grateful for Anna Marie's help. And one of our colleagues Neil Henderson, who really opened the door for me. Again, that data really drove home the point that if we're going to make a difference, we have to do a better job of including underrepresented groups.

CATHY WURZER: And we should say that as many as one in three Native American elders will develop Alzheimer's or some other form of dementia. Do we know why?

WILLIAM MANTYH: Yeah, that's still an unanswered question. Actually, one of the key parts of our research is trying to figure out what's going on there. We know that things like diabetes is certainly generally higher in American Indian populations. We know that there's obviously a lot of socioeconomic factors that play a role. It's a massive undertaking, and we're really humbled to try and at least scratch the surface with the study we're doing right now.

CATHY WURZER: So as I mentioned in the introduction, hallucinations are most common among folks living with Lewy body dementia. And the information as I read your study was quite interesting, because I'm wondering in the case of the Ojibwe elders studied, there's something going on here that's quite interesting. Anna Marie, could you explain, and then Doctor, could you maybe add your thoughts?

ANNA MARIE HILL: Sure. Well, you say it's interesting what's going on. However, it's something that's very common and known in our communities, is that at the end of life, many of us experience seeing things like our relatives and others who've walked on before us. And that is a common experience. And within our community, it's accepted. It's completely accepted as a normal process, a normal part of departing from this physical world and going into the spirit world.

And we do not categorize this as anything is wrong with us there's not a delusion. There's not a hallucination. And we just accept that. And one of the concerns of our community is misdiagnosis. I've been working in this area somewhat related advocating for health care in all sorts of areas. And we are very concerned that we're seeing or were not known how we represent our community. And so that's how I explained-- I mean, that's how I explain how it's interesting or how it's just not unknown.

CATHY WURZER: So let me see if I understand. So a Native American elder comes in to talks to his or her physician. And if it's somehow made clear that the elder is seeing visions of the non-physical world, will the doctor then misdiagnose that individual with dementia?

ANNA MARIE HILL: Well, I think that's a good question for Dr. Mantyh. And I think yes, I think commonly, I think commonly, we can be misdiagnosed. Because the cultural understandings are our culture, our traditions, our beliefs are not known. Even from our family doctor, who might be from a different community and say not from the Native community. And that's because there's a lack or this-- we haven't bridged the gap of knowing each other and community. So Dr Mantyh, you might want to put more in there.

WILLIAM MANTYH: Yeah, Yeah. So I always use this number, too. The average doctor's visit in the United States is 16 minutes long. And frequently, it's quite rushed. And unless if you have a good information or a good handle on a patient's background and culture. And if you hear something like a patient saying, I have visions of an ancestor of mine standing in the room with me, and then a couple seconds later, they leave, that normally, I think, would trigger a lot of suspicion on the evaluating physician that this person could be, having a psychiatric or a neurologic disease.

And that would go down the path of potentially an incorrect diagnosis, administering drugs that the patient wouldn't need and could actually be harmful. So yeah, I think especially when you're in the field of brain disease, you really have to know how a patient's culture is going to impact their presentation. And as Anna Marie explained, I think there's just a huge lack of that information in American Indian communities. And again, that's one of the driving factors of why we're doing the research.

CATHY WURZER: See Anna Marie, how do you distinguish between seeing spirits and hallucinations?

ANNA MARIE HILL: Well, that's a really good question. Particular in what we're talking about in the end of a life situation. And I'll speak to my father, who was passing away when he was in the veterans home and we were all visiting with him and around him around the bedside. He had called me over to the bedside and said that he had seen his relatives and some of his friends. And he was ready to go there. He was ready to go home, is what he told us.

So to me, very distinctly, that is not a hallucination. That is a wonderful, wonderful thing that eases everybody's mind and heart and the hardship in the room, because you know that they're going to this other place. And that is not clearly by what I-- my lived experience in being from Red Lake and and here is that we know these are our traditions, these are our beliefs. And we know that that's not a hallucination.

I'm not an expert in diagnosing hallucinations. I'm not a doctor. So if I were to flop over to something that's, say, I have experience in substance abuse and it's a substance, that would be a whole different, perhaps, category of diagnosis. Does that make sense?

CATHY WURZER: Yeah. And in fact, where I was reading this was recently actually, that as many as 80% of folks who've lost a loved one report seeing or hearing or feeling the touch of that dead person. And that's even among Euro-Americans, too, evidently. So it's pretty common. And it's quite interesting, which actually I think would bear more research, right. Are there future research ahead on this topic.

ANNA MARIE HILL: I would imagine there's a lot of research ahead. I would hope there's a lot of research ahead. And for the reason is to ease the pain of all-- when you mentioned Euro-Americans. Of course, American Indians. But everybody to ease their pain and sadness or hardship over something that's as natural as death and dying. Passing on to the next world, which many of us all-- I mean, all of us, we can't escape it, can we?

Right? But Doctor, maybe a little bit more about research that's coming up.

CATHY WURZER: And anything else, Doctor, that you want to learn about this?

WILLIAM MANTYH: Yeah. Well, I'll say this much. I think at the end of the day, we have to be very humble about what we understand about the brain. Even people who have spent their entire career trying to understand it. We don't understand the basic things about what makes us who we are. How do we remember something? , We know that if you take away an area of the brain that that will affect your ability to remember things.

But we really don't understand the basic mechanism of memory. Again, things like personality or what makes us who we are. Certainly how a hallucination happens. So can we understand a little bit about the neuroanatomy. But we're very much in the dark ages when it comes to our ability to explain why we perceive things the way that we do and why we remember certain things and not remember other things. Again, it's still quite a mystery.

But there is a lot of research happening in the field. And there's a lot of new technologies like brain imaging that can look at the brain in ever higher magnifications. There's new cellular components to look at. What the different neurons are doing and how they communicate with one another. But we're at a very exciting time in neuroscience. But again, we're still very much at the beginning of understanding these complex processes.

CATHY WURZER: I appreciate your time. Thanks for doing this work. And I hope I get to talk with you both again sometime soon in the new year.

WILLIAM MANTYH: Thank you for having.

ANNA MARIE HILL: Thank you very much. I hope so. Thank you.

CATHY WURZER: Dr. Will Mantyh has been with us. He's a neurologist at the U of M Medical School in M Health Fairview. Anna Marie Hill works at the U of M Medical School.