Stan, Clarence, and Dr. Barry Baines (Health Chatter's new medical advisor) chat with Dr. Joseph Gaugler about long-term care, longevity, loneliness, and aging.Dr. Gaugler is a distinguished University McKnight Professor and Robert L. Kane Endowed Chair in Long-Term Care and Aging at the University of Minnesota School of Public Health. Dr. Gaugler’s research examines the sources and effectiveness of long-term care for persons with Alzheimer's disease and other chronic conditions. As an applied gerontologist, Dr. Gaugler's interests include Alzheimer's disease and long-term care, the longitudinal ramifications of family care for persons with dementia and other chronic conditions, and the effectiveness of community-based and psychosocial services for older adults with dementia and their caregiving families. Underpinning these substantive areas, Dr. Gaugler also has interests in mixed methods and implementation science.Listen along as Dr. Gaugler shares his expertise on long-term care, longevity, loneliness, and aging.Join the conversation at healthchatterpodcast.comBrought to you in support of Hue-MAN, who is Creating Healthy Communities through Innovative Partnerships.More about their work can be found at http://huemanpartnership.org/
Hello, everybody. Welcome to Health Chatter. In today's episode, actually, we're going to be covering a few variables today in the healthcare arena. One is long-term care, longevity. We're going to touch on loneliness a little bit and also aging. We have a great guest with us. We'll get to his introduction in just a moment.
As you all know, if you've listened to Health Chatter and some of our great shows, we've got a great wonderful cast that really helps us provide insights into the shows and also gets the shows out to you, the listening audience. Our researchers include Maddie Levine-Wolfe, Aaron Collins, Deandra Howard, and Sheridan Nygaard. Sheridan also does some marketing for us.
And then, of course, we have Matthew Campbell, who does our actually all of our production and gets the shows out to you, the listening audience. We have also our new medical advisor with us and on our team, Dr. Barry Bain. So welcome to you, Barry. It's great to have you aboard.
Thanks.
And then of course, there's Clarence Jones. We've had a great time doing these shows. He's a great co-host, brings a really interesting community angles to all the subjects that we bring to you. So Clarence, once again, It's great. It's always really great.
So also we have a sponsor, and that's Human Partnership, a great community health organization that provides a lot of services to a lot of different groups out in the community. Thank you to Human Partnership. You can check them out at human, H-U-E-M-A-N, partnership.org. And you can check us out at healthchatterpodcast.com. And so with all that, now we get into the subject for today.
We've got a great guest with us, Dr. Joseph Gogler from the University of Minnesota, Distinguished University Professor, Dr. Robert L. Cain, Endowed Chair in Long-Term Care. I knew Bob Cain for many, many years. He was a a wonderful colleague. He was also the Dean of the School of Public Health in the state of Minnesota.
Dr. Gogler's research examines the sources and effectiveness of long-term care for persons with Alzheimer's disease and other chronic decisions. He's applied gerontologists Interest includes Alzheimer's, long-term care, longitudinal ramifications of family care for persons with dementia and chronic conditions. It's great having you. And for our listening audience, how did I connect with Joe?
Well, there was an article in the New York Times that's really going to kick off our discussion here. There's an article in the New York Times, February 3rd, And the title of the article was When a Spouse Goes to a Nursing Home.
And without even reading the article further, I was saying to myself, wow, that really has a lot of implications, not only for the person that's going into the long-term care facility, but also the person that's placing them in the facility. So then, of course, then I read the article, and then, of course, Dr. Gagler's research was noted in it. So why don't we start out there, first of all.
Joe, why don't you give us just a sense of what it means to get or to place a person, a loved one, a significant one, in a long-term care facility, and what ramifications does it have for that person that's going into the facility, as well as the one that's perhaps left at home.
Right, yeah. This is a topic that I've been interested in as far back as my master's thesis back at Penn State. Gosh, it's been a while now. I'm not even going to say how many years. That's a great question to ask. It's also a very complicated one, in part because of the heterogeneity of
caregiving context, experiences, in some cases, functional or disease trajectories on the part of the care recipient, we'll use the term relative in this instance, and under what circumstances the decision is made to admit a loved one to some type of residential long-term care setting. When you factor in all of these different
Layers of perspectives, preferences, contextual issues, financial barriers, stress. I mean, the list can go on and on. It becomes very, very challenging to simply summarize, well, it's this way and this is what, you know, this family should be worried about versus that one, etc.
I mean, I will say, and I think in talking to many families and our research to some extent has borne this out, you know, for many families, it is a very challenging decision, particularly coming to the point where that decision needs to be made.
There's often conflict within the family as to whether, you know, some individuals, whether it might be a spouse or partner or adult children, believe it's the right decision to feelings of guilt. to then extending to challenges navigating the choice of a residential care setting and adapting to a loved one's placement in some type of residential long-term care setting.
So one has to think of it, I think, from the perspective of the care recipient, from the family, and then also from a temporal perspective in terms of timings. When does it happen under what circumstances does it happen?
For example, if someone is caring for a loved one living with dementia for many years at home and the decision is made maybe due to safety or some other reasons to, you know, we have to 24 hour care is needed. That's a very different circumstance versus let's say a crisis occurs, a fall happens, maybe wandering happens.
Someone is admitted to a hospital and then the discharge social worker tells the family, you know, you need to make a decision. we believe it's in the best interest for you and your loved one to go to a nursing home. Here are some beds that are available. That's a very, very different circumstance under which to make, again, a very complicated decision.
A decision, I might add, there's never a right or wrong answer to.
Yeah. You know, it's interesting. I remember when my sister and I had the discussion with my own mother that it was time for her to go, in this case, into an assisted living facility. And I remember prior to that, the discussion that we had about taking the keys from the car away. Okay. Which is kind of like, I almost perceive that as a step, you know, prior.
It's like one of those variables where you're taking away something from somebody. from somebody, frankly, for perhaps maybe the same reasons that you might be putting them into a long-term care facility or assisted with safety, health reasons, et cetera. Yeah, Clarence.
Yeah, thank you. Joe, I appreciate that conversation. What it does for me, you use the term complexity. This whole issue is so complex, especially when it comes to family. And I think that part of and I'm just going to share something with you. That's what health care is about.
OK, so I told my wife, if I ever get to a point in my life where I have Alzheimer's or dementia and she has to place me into a home to be OK with that, you know, and she doesn't have to worry about coming to visit me every day. You know, I'm just saying, just make sure that I'm clean and that I'm not being, you know, that I'm being taken care of.
But I think it's one of those kinds of things where it is a issue, as you're saying, where families need to talk about this before it happens. And so that's all I want to say is that it just brought up that emotional piece for me where I've already decided, like, you don't have to visit me every day. Just make sure I'm okay.
That's a great point, Clarence. And, you know, I emphasize the point of temporality. And what I mean by that is time. How often do families have the sufficient information and time to make that reasoned decision? We very often do not plan ahead when it comes to long-term care needs. I mean,
I don't know if any of you here on the podcast or the listening audience, I always ask this when I'm giving a community presentation, how many of you actually have long-term care insurance or something similar? Often, it's pretty rare. Now, again, there are issues with that too in terms of is long-term care insurance even viable at this point?
But nonetheless, do people actually think and plan ahead for these types of very significant transitions that can occur later in life? Not just from a financial standpoint, but from a social and personal one. And so Stanton, in what you're saying, and actually you're touching on issues that is of great interest to myself and our research team.
I had a chance a few years ago to visit Australia to give a lecture out there. And I met with some wonderful colleagues in some of the different institutions in Australia. And after my trip, it led to two different initiatives that we were able to kind of bring and tailor back to the United States.
One has to do with dementia-friendly airports, which is a whole other topic, and hopefully you'll pick that up on HealthShatter, in part because the Brisbane airport and some others have actually engaged in making themselves dementia-friendly. So let's put that off to the side.
But then the second thing, a group of researchers have developed a very compelling support and educational program to help older adults and families navigate driving cessation. specifically older adults with cognitive impairment. And we actually are working closely with those colleagues at the University of Queensland and elsewhere in Australia to actually adapt that program.
It's called Car Free Me here in the US. And we just piloted it. We actually had some very strong results. And again, I think part of the reason why those results emerged, both for this as well as other support programs we've tested and evaluated for other transitions like
the decision to place a loved one in, say, a nursing home or assisted living facility, is giving families that space and time to think through the pros and cons of, again, a decision that there is no right or wrong answer. I mean, I can't emphasize that enough. And, you know, I think back to Dr. Cain, Bob Cain's work. He was very interested in shared decision making.
And again, this idea of giving families and others tools to weigh out what are the positives versus what are the potential negatives of making this decision within chronic disease care context. And certainly in dementia, there are many of those decisions that occur. You talked about driving cessation as one, certainly having to potentially make a move is another.
And there's a whole series of other types of key care transitions that occur.
It's interesting when you talk about how it's done. Again, I can use my own family as a perfect illustration. My father passed away many, many years ago, and then my mother was left. And here it was, her kids... were here to help make those decisions. But the kids were adults and they had their own families to deal with. And so then it became, how is it that you actually make these decisions?
Like this article in the New York Times was referring to situations where a spouse, replaces a spouse, okay? So we can talk about that for just a second, but then also, you know, there's a situation, well, what about spouse isn't there? Okay, then it's adult children, perhaps, that are making the decision. Then it becomes adult children, are they living in the same city?
Okay, I mean, it just keeps going on and on, these variables that affect people's lives for those that are being potentially placed, and then also those that are trying to do what's best.
Yeah, I mean, I don't think I have much to add to that. I mean, one thing about the New York Times article that's interesting, and hopefully people have had a chance to take a look at that, is I always find the New York Times articles, not only the articles interesting, but the comments themselves.
Yeah.
A lot of the readers were really sharing heartbreaking stories of what their situations were like. And, you know, I think one could almost do a study of those comments. And, you know, the insights I think you would gather is, again, this great variability to the sense of shame and guilt and challenge around the decision, which is pervasive. And I don't think we always acknowledge that. Yeah.
But then third, again, there's a lot of variability too, and much of it depends on the care setting itself. It depends on the family dynamics. Certainly if family conflict is present, that greatly affects that situation. And getting back to the setting itself, I mean, does the facility do a good job in working with family, engaging with family, helping them through this challenging situation?
I remember once, Stanton, it was really interesting. This was some time ago, not in Minnesota, but I remember talking to a nursing home administrator and he said something along the lines of, well, you know, if we could just keep the family out those first 30 days, everything would be fine.
And to me, it's kind of like, you know, what are you trying to achieve in terms of person-centered care, quality care? I mean, family or other individuals who are close to that person are essential to helping the setting understand who is this individual as a person? What do they like? What do they want?
And, you know, if a setting doesn't approach it that way, I think, you know, there can be real challenges. Please, Claire, I'm sorry.
Yeah, no, no. I was listening as we were talking about this topic, long-term care, longevity, loneliness, aging. What is the process we should be thinking about? with this as we become older. I'm thinking that I'm more seasoned, and there has to be some kind of process that you have discovered in your research that we should be considering or thinking about as we become older.
Our bodies are changing. You know, everything is different now. What should we be looking at?
So Clarence, let me ask you, when you say process and what we should be looking at, process to do what? Stay at home longer? Live better? Both?
To live better. To live better. Yeah, because, you know, we could have early onset dementia. I mean, you know, but there's got to be something that we need to be thinking about, you know, with some of these scenarios.
Or meaningful, you know, it could be better and more meaningful.
That's right. I personally am a big believer, and I'm biased to this in this regard, given I'm in a school of public health, but, you know, adopting something like a social determinants of health framework to help us live in more age-friendly communities, communities that allow for vibrant social interaction, communities that are set up environmentally in ways that can facilitate aging well.
Offering opportunities for volunteering, social connection, perhaps even thinking about employment in different ways than we traditionally have in this country to allow older people, if they so choose, to maximize the many talents they have. You know, I was just in Florida this past week to give a presentation at the University of Minnesota Development Office.
The foundation, they had a gathering. Many, many alumni, as you could imagine, are living in Florida.
In Florida.
Or snowbirds down there, as you could imagine, right? So I gave a talk, and my whole talk was about... rethinking this notion of the quote unquote tsunami, the aging tsunami. I mean, I don't know if you've read the media much, but oftentimes you'll see many articles talking about where, you know, we're falling off this demographic cliff. It is an aging tsunami. What are we going to do?
It's a crisis. It's a calamity, you know, all these different things. And My feeling, Clarence, is, you know, as a society, we have to begin to view the aging of our population for all communities as not just a challenge, but also an opportunity. What is there to be tapped in innovative ways that we haven't done yet successfully?
I think if we take that philosophy first, then we can more readily achieve, you know, what I would consider and others such as the ERP, which has championed this idea of true age-friendly communities.
So let me ask you, do any of the ideas that you're talking about, Joe, have they been underscored, for instance, in Healthy People, the Objectives for the Nation, or not?
Well, social determinants of health certainly have been. Yes, that for sure. That's been incorporated into Healthy People 2030. Yeah. Whether aging specifically is unhealthy people 2030, I would have to look more closely. I don't recall there's a lot of significant focus just on aging per se.
But that being said, you know, certainly many institutes like the governmental institutes like the National Institute on Aging, Centers for Disease Control certainly as well, and others have advocated and have tried to focus not just scholarship, but more importantly, I think also policy and service development on
along these ideas of aging as a public health imperative, not just as a challenge, but as an opportunity as well, so.
Yeah, Barry. Yeah, one of the things that I wanted to just pick up on is what Clarence had mentioned, and actually all of us have talked about the complexity of this issue. And oftentimes it seems to me that there is a significant knowledge gap, and especially for families, in that they really, they don't know what they don't know. And so they don't know what questions to ask.
And as a result of that, my question is really more what resources might be available for either a checklist of things to cover, a script that they can have the conversation, just a sidebar. My wife and I were involved in having our well, Sandy's mom, but my mother-in-law who had dementia to move into a long-term care facility. And of course she said she never wanted to do that.
And soon after we did that, my wife and I had had the conversation that sort of like what Clarence was talking about as well, is that when it came to be that time, even if I might not like it, I know that in the bigger picture, that might be the best thing to do. And oftentimes, once you broach the subject and have the conversation, it's easier to talk about.
But many people don't know where to start. They don't know what they don't know, so they don't know what to ask. So I'm wondering what light you might be able to shed on that aspect of it from our resources.
Yeah, that's a great question, Dr. Baines. I developed this community presentation probably around 10, 15 years ago now. I called it The Turning Point. And what it was, it was for families and others that kind of provided not just information about, okay, what is residential long-term care?
What's the difference between assisted living, nursing home, et cetera, but then also various resources that families could leverage to help them make better decisions. And, you know, you really hit the nail on the head with this idea of a knowledge gap in that many families don't know that we have a Minnesota nursing home report card.
That actually goes beyond what is available nationally, which is called CMS Compare, you know, in terms of the different areas and citations and other domains of quality of nursing homes. The Minnesota Nursing Home Report Card also includes information around satisfaction of residents, number of private pay, you know, or number of single occupant rooms.
I mean, all this like key information, I think many of us would find very helpful and critical in making decisions, but many people just don't know about it and haven't heard of it before. That's one example.
CMS, as well as I believe the Assisted Living Federation, have also created really nice checklists that families and others can use when presumably visiting different settings and making decisions and helping them just with the various types of questions to ask and think about when they're taking a tour, talking with the staff and whatnot.
And then the third resource I think is really helpful is, I believe it's University of Ottawa, or the Ottawa Health Research Institute. I forget the acronym, forgive me. But they actually have a whole compendium of different shared decision-making resources, many of them evidence-based, for a range of different healthcare decisions.
And one of them includes making the decision to enter a nursing home or residential care setting. And it's very nice and it's very interactive. And again, it helps... families weigh the pros and cons, and it's tailored to each situation as to whether it's potentially the right decision or not. Again, these are all great resources. They've been developed and created.
The issue, as it is with so much of knowledge and innovation and science, Barry, is less about do these tools exist and more about disseminating and implementing them effectively. That whole latter piece to me is, again, something I'm really interested in, but In large, I think many of us, particularly those in academia, have not done a good job in attending to.
You know, it's interesting when you think about resources that are available, you know, for many of us, you look for resources when you need to look for them. And it's like, you know, if all of a sudden you're diagnosed like with cancer and you've never dealt with cancer before in your life, it's like, where in the hell do you start? Okay. Same idea here.
With long-term care issues, I have a sense that people have at least been thinking about it a little bit longer. Overall, but the problem is, is that, you know, still where to go to find these resources that'll make decision making easier. So we touched on one thing, you know, payment, you know, you talked about long-term care insurance and all this other kind of stuff. So here's what was curious.
Actually, one of my colleagues asked me this question. He said, make sure you ask him this. How do people pay for placing a spouse in long-term care? Is it separate insurance kicks in? How does that work? In other words, is it like if I decided I have to place my spouse in insurance, who's responsible for the payment mechanisms of that? Or is that all worked out with,
social workers and i think it's usually just like we we started the program off with stanton i mean it it varies and it depends really on what are the financial resources of that particular family i mean uh in in most instances payment often will begin although i can't even say most instances i'd have to look into this more yeah but often for many families it'll begin with some
private pay option yeah uh you know if one is lucky enough to have long-term care insurance and again very few do that can cover some aspects of services at least at the beginning but i think where it becomes challenging for many families is if someone and we know with people living with dementia it could be many years um someone who's living in residential long-term care at some point you know the resources that one has available are going to run out of 401k exactly
All of those things. And so then, you know, the very challenging decision has to be made about, quote unquote, spending down where then public insurance covers it, which is Medicaid. That then also limits options, limits availability in terms of where people can go, where they can stay. And so, again, it becomes a very fragmented process.
series of financial decisions that often families are confronted with.
Yeah. Which complicates it all.
Right. Medicaid, when it was originally designed and developed in the mid-60s, was never intended to pay for long-term care. It was health insurance, medical insurance for the poor. It's become, in many ways, de facto... financing, public financing for long-term care and maybe broader long-term services, but specifically residential long-term care.
There are many scholars who have explored how can we better refinance long-term services and supports. And when I use that term, long-term services and support, broadly thinking of not just residential long-term care, but community-based supports, how can we better come up with refinancing models that can allow people to stay at home longer, which again, most of us prefer.
But that may also provide some cost savings to us as a public as well.
Yeah. Yeah. I want to ask you this question. I want to go back and talk about this. Can you identify some age-friendly places and spaces? And what is it that we should be learning from them?
You know, that's a great question, Clarence. I'm sure there's a list. I know I just had to cite this for a paper I was writing a couple of months ago. There are hundreds of age-friendly communities in the U.S.,
Um, and usually what that entails is kind of building coalitions and partnerships often amongst organizations that maybe wouldn't originally think about themselves as being on the forefront of age friendliness. You know, it could be the local library, the local police department, local businesses, et cetera.
And then those communities go through this process to more or less become quote unquote age friendly. Now, I'll share something what I think, Clarence, and this is an issue with age friendliness. If you drove into an age friendly community, would you know it's age friendly? I'm not sure you would, and I don't know. You know, ideally, what should an age friendly community look like?
There should be infrastructure built in such a way that can allow older people to more easily navigate their neighborhoods, to identify the social and other resources and access those resources more easily. Whether there's a blueprint out there where I can say, look, Clarence, take this checklist, go to, you know, Albert Lee's a good example. You know, that's a blue zone.
I'm sure many people consider that's probably age-friendly. Go down there and hear Clarence. Here's the checklist. Come back and let's rate it. I don't think the age-friendly movement has gotten that far yet. It's much more been focused on what are the partnerships and relationships that need to be built to begin to think about how, you know, each community can make themselves age-friendly and
But there's a lot more work that needs to be done, for lack of a better term, and forgive me, I'm a researcher, but to measure age-friendly. There have been tools developed, but I don't know how widely they've been applied to communities. So if I drive down to Albert Lee, can I say with all confidence, this is age-friendly?
The other thing I'll say, too, about age-friendly and this whole movement, this principle is is age-friendly has gone beyond just communities. There's an age-friendly university movement. So we engaged with the leadership at the University of Minnesota, our Center for Healthy Aging and Innovation, and the University of Minnesota became the first age-friendly university in the state.
And really all that was was just a series of actions we had to take, including some assessments and other things, to become age-friendly. But then it kind of stopped. And so luckily, under the leadership of Rajan Moon, Dr. Rajan Moon, who's one of our associate directors, we have a very vibrant age-friendly council. We have age-friendly university day, et cetera.
But we have work to do to go beyond just creating a checklist saying, okay, we did this, this, this, this. Okay, we're age-friendly. And more about measuring and evaluating and identifying metrics to ensure that you indeed are age-friendly. Similarly with age-friendly health systems, et cetera.
So does age-friendly, at least the way it's defined so far, also include sickness-friendly?
That's a good point, Stan. I haven't heard that term used in the context of age-friendly.
Yeah.
I have not heard that term, so yeah.
So I want to kind of talk about some other variables that kind of linger in this conversation, and that's the ideas of loneliness.
Mm-hmm.
Being alone and those types of things. So just for our listening audience, if you have a chance, Dr. Vivek Murthy, who used to be the Surgeon General of the United States, has really taken this upon himself to address this. loneliness. And it's interesting, he really defined, and we can link it to this conversation for sure.
There's intimate loneliness, what he described, intimate loneliness, relationship loneliness, community loneliness, and isolation, living alone, all together. And when you place a spouse or a significant other in a long-term care facility, I can't help but think that you're going to be dealing with some of this stuff. Some level of isolation, some level of loneliness all of a sudden.
I mean, even if that person might've been so sick that you placed in long-term care, but just their presence, just being out of the house, can, I would assume can lead to that. Yet, you know, according to the article that came in out in the New York Times, it, there's also a sense of relief, too. Relief and stress reduction. So I wonder if you could comment on that a little bit.
Yeah, you know, and yeah, I'm glad you brought that, that latter point up in particular. Um, that, you know, that is what we found in our research actually. And, and we found it across multiple data sources. So my sense is, you know, it has some validity is when, when, when families were assessed on measures of stress and depression over time. So let's say, uh, up to a year after placement.
and such, sometimes longer, we would find generally pretty significant, in fact, clinically significant reductions in depressive feelings of depressive symptoms, as well as feelings of stress per se. And so, yes, certainly over time, there's a sense of relief on the part of families, at least as it relates to care related stress. And it makes sense if you think about it. I
in many instances when someone is admitted to a residential setting. However, that doesn't mean there might be other stressors that arise that aren't being captured by these measures of care-related stress. Dealing with the staff. We talked about payment, financial issues, having to advocate for a loved one to ensure that they're getting what they need. These can cause other potential stressors.
And one thing we seem to be, you know, I think we get at least, at the very least we've gotten signals in our work is these pressures tend to be most prominent in those first few months after admission, usually. That's usually when the biggest issues are occurring.
To get to your first point of loneliness in general, certainly in the context of nursing home admission, but maybe even more broadly for both families as well as relatives as well. And it was a tragic, I would say a very tragic natural experiment we all witnessed was the COVID pandemic. And what did we see? And I heard this from many families
Staff and others was when families could no longer visit that the residents were were suffering significantly. People were using terms like they almost saw it similar as like failure to thrive amongst these residents and. What that really, I think, emphasized and demonstrates. Now, do I have a great scientific findings to share with you to say, look at what I've seen?
I haven't seen that necessarily, but I've heard enough from the field to suggest that it was an issue. And many, you know, there's probably many of your listeners and others who experienced it firsthand is, you know, this whole, this idea of social connection, social interaction is critical to health. Certainly it's critical to successful aging.
It's a core component of social determinants of health. And, you know, at the very least has been elevated as an issue of public health concern. And again, getting back to this whole conversation and discussion about age-friendly communities, what is an age-friendly community? How can we achieve it? This idea of creating social connections for older people is critical.
And, you know, one point I wanted to make that I didn't get to when talking about this Florida presentation is, I really wanted to emphasize for that audience when we talk about, okay, what can we do to make our society more friendly is what is good for older people often is good for all of us.
So when you're talking about social connection, creating greater social connections, social engagement, whether it's through volunteering or whatnot, I would argue that has benefits across the life course for all segments of society, not just older people. Similarly, when you talk about how do we create a greater age friendly health system?
I mean, to me, the knee jerk obvious response is we need to incorporate geriatric principles. more effectively within health care systems. Well, quite frankly, that's good for anyone, I would argue, because good geriatric care is really good chronic disease care. And again, our health care system, at least in some instances, maybe in many, has fallen short in that regard.
Dr. Godler, I want to ask you this question. What does the research say about self-care during this process without feeling guilty?
Yeah, I mean, self-care is generally a recommended strategy and approach in many, many support programs and interventions for families who are caring for loved ones with dementia, either at home or those who are trying to navigate this placement experience. And it is very hard, I think, to get many caregivers, number one, even identify that they're a caregiver.
There are many people, you might know some in your own lives, where you see them, they clearly are extending a lot of energy and caring for, say, a partner, a spouse, a parent who is living with a chronic disease. But if you try to get them to identify themselves as a caregiver, oftentimes that doesn't even register.
Well, I'm just doing this because I'm their son or I'm their wife or husband or partner. And so that self-identification often is critical in a first step to then open the conversation as to you're doing a lot for your loved one. You know, in some cases you're doing a heroic amount of work.
However, you need to take care of yourself in order to be the best possible caregiver, son, partner, spouse to your loved one. And here are some strategies on how to do that. And oftentimes that's a light bulb moment for many families because they don't think about that.
Oftentimes, sometimes when people approach us for our studies, even though we're very clear about, you know, this is a study about dementia caregiving or caregiving support, they often will enroll because they either want to do it to help somebody else, whether it's their loved one directly or some other caregiver out there, altruism, and never really identify what their own specific needs are per se.
So that to me is a critical first step often in helping families with this entire situation of care and caregiving. And You know, we hold an annual conference each year at the University of Minnesota, a free one called Caring for People with Memory Loss.
It's all about tools and resources for families, people living with dementia, as well as healthcare professionals, and how to best help someone living with cognitive impairments. And let me, let me ask you, you know, can I just make, I just want to finish this real quick, Stan. Yeah. And the one thing, and it's getting to Clarence's question.
And the one thing that always strikes me is when people come to the conference, particularly for the first time, you know, their reaction is always, I never knew there were this many other people in this situation. And so, you know, again, this all dovetails with the loneliness thing, but then also the issue of self-care, as you mentioned, Clarence, sorry, Stan.
So, you know, there's, All this, I mean, it's a lot when you really think about all the variables and all the implications and timing and costs and all that. So based on everything, what do you believe is the lowest hanging fruit, so to speak, in order to really have some strong implications for our communities? And how is it that we communicate that effectively?
The lowest hanging fruit, that's a good question. I should think about that more. You know, I think the lowest hanging fruit, I believe, I do think is, and I know I keep bringing this up over and over, I do think it's, you know, working with communities to begin the age-friendly community process. It's not very costly. It's not a real heavy lift. It helps break down silos, right?
amongst organizations and people who might not necessarily think about aging as an important issue for their given community. And then I do believe it begins to open up doors to maybe other types of action. whether it's advocating for certain types of services and supports to be available, whether it is moving towards different infrastructural advancements.
So that to me is, I think, I hesitate to call it low-hanging fruit because it is work and it is effort. Thinking of the big picture, so much innovation comes from communities themselves. It's not necessarily flowing from academia to the community all the time. I think many you know, academics like to think that.
I think oftentimes the solutions, the best solutions that are most tailored to the needs locally come from the community themselves. Creating a mechanism for that to happen, I think is best, not only for the communities, in the end, it's best for us as researchers as well. Because then we can begin to identify ideas, innovations that then could be tested more broadly and disseminated more broadly.
So in the end, that to me, I think are critical first steps.
You know, I think of, you know, long-term care is avoidance behavior. You know, it's like none of us really want to, and for many people, you know, they want to live at home and all this kind of, so it's avoidance behavior. So how is it that we can get beyond, it shouldn't be avoided, okay? It shouldn't have a negative connotation in that sense.
How is it that we can truly make long-term care possible? easier, more user-friendly, more engaging for all of us in the sense that it's not as hard to navigate for those that really need it and for those that are behind. So Clarence, other thoughts that you have?
I was thinking about this. I want to live longer. How do I how do I do that? I mean, you know, I mean, you've studied a lot about, you know, Alzheimer's and things like that. I'm trying. You know, I know that that forgetting stuff is a normal part of getting older and things like that.
But, you know, are there some things that we could be doing that would, you know, some low hanging fruits again that we could be doing to to be better, have a better way of life?
You know, before this, we had a show right prior to this on the illusion of immortality. Oh, yeah.
Yeah. Yeah. Well, you know, I mean, I'm sure you've read this story. I mean, one thing you can do, Clarence, is you can spend the $2 million that that 49, 46-year-old tech billionaire is doing to try to live forever. I mean, good luck with that, I guess.
Yeah, right, right, right.
So, I mean, what are reasonable ways to think about living better and longer? And I don't think anything I'm going to say should be a surprise. And again, it gets back to this idea of we kind of know some of the answers. It's a matter of whether we and do we have the resources available to do it. And so I think one thing with longevity is certainly good heart health.
Heart health certainly has links, as we know, to cognitive health, dementia later in life. So managing one's hypertension, managing one's weight to a reasonable extent. managing one's diabetes. I mean, these clearly are all factors that can contribute to potential longevity. Others, as well, as you've heard me indicating, certainly is social interaction and engagement.
And again, I acknowledge that not all of us are social butterflies. Not all of us like to be around people talking all the time and engaging in activity. But that being said, there certainly is pretty good literature suggesting living alone and probably more specifically loneliness is associated with a number of adverse health outcomes in late life, including dementia.
Absolutely, yeah. And human beings are really hardwired to be more interactive.
They very much are. And I think that's something that, you know, you can make a good case, could be rapidly eroding, given our technology addiction as a society. You know, and I'm guilty of that, I'll admit it. So, I mean, that's another area, Clarence, and You know, I think a third is, again, moderate exercise, clearly.
Limiting alcohol intake, again, which is probably linked to heart health too, if not eliminating it entirely. And again, the literature really vacillates a lot. Is red wine good or not? Is a beer every once in a while? I mean, it seems to go back and forth. But again, clearly limiting alcohol intake is important.
Moderate exercise that I would argue would include aerobic exercise, flexibility, and then strength training too, but moderately. That seems to be pretty important as well. I think if you mix in all of those different factors, and I noticed in some of the pre-podcast notes, you had alluded to some of the studies that have been examining this, that have looked at kind of these factors.
Lifestyle behavioral interventions that include social interaction, you know, diet and exercise and such. And, you know, they have shown at least in a preliminary fashion, some promising results.
Yeah.
Now, one thing you can't discount, you know, genetics plays a role in longevity. We can't ignore that. That being said, though, for example, if you look at dementia and lifetime prevalence of dementia risk, and you can probably look at mortality factors and dementia risk, and there's probably quite a bit of overlap in those two.
You know, the most recent evidence of synthesizing all the available literature suggests, you know, 40% of dementia risk is modifiable, which is significant, but it also necessitates really a life course, lifespan, if not public health approach to achieve that, so.
You know, when you talk about genetics, it's kind of like, you know, for myself, I feel like I have like a split personality because it's my father died when he was he was he was quite young and I was young. And then my mother died when she was quite old. So where does that leave me somewhere genetically in between? Right.
Yeah, I mean, we could spend all day thinking of, well, you know, I had my, this grandparent did this and this father. Yeah, exactly. I mean, you know, I guess the best way to approach this is what are the elements that you can control?
You know, if there is a history of certain significant health factors in one's family, you know, is to be screening that and determining how one can, if not prevent it, manage it effectively and, you know, proceed the best way possible that way. You know, one tried and true way we know extends the lifespan clearance, but none of us want to do. What do you think it is? Let me ask you all.
What do you think it is? There's one tried and true way. At the very least, an animal model seems to suggest is the case. What do you think it is?
The tried and true exercise.
No.
Better sleep. Activity. Activity.
It's caloric restriction.
Caloric restriction, okay.
Significantly. Clarence, if you're willing to live on 1,100 calories a day, you can live longer. Is that good for your mental health? No, it's not. I think it's for the quality of life. Would I like to live longer? Yes. I would never want to live the life of that tech billionaire and what he's doing to himself, which is odd beyond belief.
Exactly. Does that mean that I have to forage or what? What does that mean?
Yeah, pretty much. You can't eat. You just don't eat a lot. I know some people try to submit. They subjected themselves to this regimen. Sure. Who knows what's going on with that.
Okay. I'll take your word for it. I won't try that one. I'll stick with it. I will say this about the whole lifestyle thing.
you know, approach is we have to be very careful. I think when communicating this and engaging with different communities about this and using culturally appropriate and tailored messaging content with doing that,
I mean, I'm Italian and I know what the Mediterranean diet is, but that doesn't mean I can go into different communities and say, you need to do the Mediterranean diet and you should eat this. I mean, it may not resonate with different communities.
And so I've seen really great examples, for example, in the indigenous communities where they have, you know, identified brain healthy diets, but aligning with, you know, traditional food and, you know, and such and ingredients in from those traditions and communities. That is, I think, the best way and an important way to try to engage all with this message.
You know, there's that infamous one-liner. I believe it's attributed to Jimmy Durante, you know, a comedian way, way back. If I knew I was going to live this long, I would have taken better care of myself. Yeah. Barry, any comments from you, Barry?
Well, I think the balance here is between quality of life and quantity of life with a lot of these things and kind of deciding. And that's where it gets very individual that each person has their priorities and they'll move ahead. So calorie restriction for me, 1100 calories. I don't know if that. the juice is worth a squeeze.
You know, live another year, you know, longer, but I'll be, you know, going through the cupboards all the time that, you know, that that's not necessarily a positive.
But I think also some of the other things, there are some, there are some basic things that people can do that I've been reading about, especially related to dementia is getting enough sleep and getting good quality sleep that there's been, quite a bit of research there.
And also, I just come down that it's this idea, I think if you have some friends, and you stay connected with them, you know, humans are, you know, sort of hardwired to be interacting with other people. And And it serves purposes, not only social, but checking in every day, making sure people are doing okay from day to day. And it's that everyday interaction that I think helps.
And one other question, just a real brief one, is that when you do have a loved one, let's say with dementia that goes into long-term care, it would seem to me that frequency of visits, though short, is probably qualitatively better than feeling like you have to be there for eight hours.
I think it is certainly from the standpoint of the well-being of the family member. And I've heard stories, it hasn't really come out of our research too much, but I've heard stories certainly of spouses, they'll go there every day and spend hours a day. And in those instances, you can make the case that,
Even though I would argue with nursing home admission or residential care, caregiving doesn't end. It changes usually, but doesn't end. In those instances, you can make the case, well, has caregiving really ended at all? And maybe it got worse. I mean, and, you know, just like you said, Clarence, this idea of self-care, it becomes really critical in those instances.
Because in the end, you might have the spouse or whoever that might be, the person who's visiting, you know, is probably being stressed might might be at risk for, you know, reduced well-being isn't necessarily that great for the care recipient themselves. It may be. It may not be. Who knows? And then third is how is this person being there all the time? How are they interacting with staff?
Is it confrontational? Is it helpful? Are they working as a team or not? You know, I mean, so again, it's it's hard for for some to let go. It's hard for some families to recognize that the role has changed. And again, that is where support during this and similar types of transitions is important.
That's why I asked the question about guilt. That's why I asked the question about guilt. Is that, I mean, you know, if somebody's up in there for eight hours a day, I mean, like, Well, clearly, I mean, that's what I mean. I know you love people. You know, you love people. But, you know, that that's, you know, if you talk to them, they don't know what you're saying.
I mean, it's like, what's what's going on? I'm not trying to be funny. I'm just trying to I'm just saying these are the things that I have struggled with. I want to say one other thing, too, is that I have been a caregiver of a caregiver and that's hard work.
So I think that, you know, for people to understand why it's so important to do self-care during this process, because this is a lot of work that you want to do, but you also have to take care of yourself at the same time.
You know, as human beings, we are given practice, right? along the way, I don't think we necessarily think of it that way. But, you know, when people, for instance, have a knee replaced, they need to have, you know, some support at home, or when somebody just gets sick at home, and you know, it's going to be, you know, it's, yeah, it's not chronic, but acute. We are given some tools.
Yeah, it's just that we don't embrace them in such a level. That we're talking about here.
Yeah, to some extent, Stanton. But, you know, again, this is because my area is in dementia. Yeah. I think when you start talking about dementia, it kind of is a different animal.
Yeah, yeah, yeah.
Dementia is tough. When you start, you know, factoring in the stigma related to dementia, caring for someone with dementia, the nature of the disease.
Yes.
Potentially all-encompassing nature.
Absolutely.
It can be opposed to a caregiver. And certainly research has shown that.
Yeah, and an incredible adjustment of lifestyle, not only for that person that is suffering from dementia, but also those that are caring. Well, this subject, subjects, can go on. We greatly appreciate your insights into this, and
We hope we can reserve the opportunity to call on you again for some other subjects that come up related to this that we think that, geez, you know, Joe would be a good voice for this. So stay tuned on that. With that, we have great shows coming up on Health Chatter. Our next show, believe it or not, will be on childhood diabetes.
And so that also will be of great interest because we're seeing higher incidence of diabetes in younger populations. So with that, thank you for being with us. Thank you for all the comments from all of us on the show. And to all of you in the listening audience, keep health chatting away.