S.4. E.4: Researching Aging and Long-Term Care

Learning for Life @ Gustavus host Greg Kaster interviews Gustie alum and expert on healthy aging at the University of Minnesota, Dr. Joseph Gaugler.
Posted on September 25th, 2020 by

Gustavus alum Joseph Gaugler ’95, Professor and Robert L. Kane Endowed Chair in Long-Term Care and Aging at the University of Minnesota and Director of the Center on Healthy Aging and Innovation there, on the impact of his Gustavus education in psychology, history, and football; the focus, rewards, and policy implications of his research; accessible and effective long-term care systems; anti-science in the U.S.; and what to look for when choosing a college.

Season 4, Episode 4: Researching Aging and Long-Term Care

Greg Kaster:

Learning for Life at Gustavus is produced by JJ Akin and Matthew Dobosenski of Gustavus Office of Marketing. Will Clark, senior communications studies major and videographer at Gustavus, who also provides technical expertise to the podcast, and me, your host, Greg Kaster. The views expressed in this podcast are not necessarily those of Gustavus Adolphus College.

In a June 2020 report, the U.S. Census Bureau estimated that the number of people 65 and over in the United States has grown by more than a third over the last decade, an increase driven largely by aging Baby Boomers like me. This same demographic, as we all know by now, has been terribly hard by the novel coronavirus pandemic currently raging in this and other countries. Even apart from that tragedy, our aging population raises all kinds of interesting and important issues about how and where people age, the effects of aging, senior care, and how both in our culture and our policies we view and treat older Americans and their caregivers.

I am proud to say that one of the leader experts in aging in Minnesota and the United States is Joseph Gaugler, Gustavus Class of 1995. Joe is Professor and Robert L. Kane Endowed Chair in Long-Term Care & Aging at the University of Minnesota, and Director of the Center on Aging in the University’s School of Public Health. A double major in honors psychology and history at Gustavus, and member of the football team who graduated summa cum laude, Joe went on to earn a Ph.D in human development and family studies from the University of Pennsylvania in 1999. He is a prolific researcher with a long list of scholarly publications, and also a frequently interviewed expert in the media. At the Center for Aging, he is involved in numerous research projects related to senior care, dementia, and Alzheimer’s, with funding from the National Institute on Aging.

And I’m delighted he can join me to talk about this quite interesting work and its important policy implications. Welcome, Joe, it’s great to reconnect after all these years! I think we haven’t reconnected since you graduated, and during which, I should note, we’ve both grown older, and let’s also say wiser as well.

Joe Gaugler:

Yeah, I hope so, Greg, I certainly do! It’s great to talk with you. Gustavus holds such a special place in my heart, and even after all these years, I think so fondly of Gustavus and all of my experiences there, so it’s a real pleasure.

Greg Kaster:

Well, likewise my pleasure as well. And let’s start with Gustavus and your path to it. Tell us a little bit about where you grew up and how you came to be a student at Gustavus.

Joe Gaugler:

Sure. So I grew up in Chicago, actually. I’m-

Greg Kaster:

Oh, my hometown! My goodness!

Joe Gaugler:

Yeah!

Greg Kaster:

I forgot about that!

Joe Gaugler:

So yeah, I grew up in Chicago till I was 15 in a suburb called Melrose Park, which is on the western side of Chicago. And I completed two years of high school in Chicago. I actually went to a Catholic preparatory school called Fenwick High School. At the time it was an all-boys school, and since then it’s become coeducational, but at the time, it was an all-boys school. But my dad worked for 3M, and so he had an opportunity… He obtained a promotion and as part of that promotion, he had to move here close to the Maplewood headquarters of 3M, because he was working in that office complex.

So we moved here and we settled in Woodbury. This was roughly around 1989 or so, and I finished my last two years of high school at Woodbury High School, and then the time came to start thinking of potential colleges. And I had played football through high school, and that was something I was interested in completing, and one school that I’d received information from was Gustavus. And I remember clearly, before my senior year, visiting the campus during the summer, and I fell in love with the campus walking on it for the first time, just being on the campus and seeing it and feeling what it was like, even though there weren’t really many students around at the time. It was the summer. And I really felt at that time this was where I wanted to go.

I did know that Gustavus had strong… I would argue holistic academic excellence, and that was something as well that of course intrigued me and was important to me. And I made the decision really almost right then and there to go to Gustavus, and it’s one I certainly didn’t regret ever since.

Greg Kaster:

Wow, glad you did. And it’s funny, I grew up in Park Forest, by the way, the south suburbs. I completely forgot about our Chicago connection [inaudible 00:04:43]. So many people have that experience coming to Gustavus, coming to the campus, which is so, so beautiful. And yes, you used the word “holistic.” I couldn’t agree more. My wife Kate… I should note you took at least one course with Kate, never with me. Nope, that’s fine, not to get personal! Kate, who also taught in the history department, Kate Wittenstein.

But in any case, she attended a small liberal arts college. I did not, but I attended a big state school, not a big private university for graduate studies. But that’s really true about Gustavus, and I suppose all liberal arts colleges at least in theory, but Gustavus really does do, I think, a good job of that caring about the whole person or the whole student, nurturing the whole student. You were on the football team. What’d you play? I don’t remember, what position did you play?

Joe Gaugler:

Oh, sorry, I was a defensive back, so that was my position. I played that same position all four years when I was at Gustavus.

Greg Kaster:

How’d the team do in those years?

Joe Gaugler:

It was… How can I say this charitably? Average, let’s put it that way.

Greg Kaster:

Okay!

Joe Gaugler:

It was an average team! Overall, roughly, around .500, give or take a couple games.

Greg Kaster:

All right, we’ll call it average. That’s good.

Joe Gaugler:

Yeah, that’s probably the best way to put it, but that was a great experience, playing football and again, being able to fully immerse myself not just in athletic activities but then more importantly, academic ones. I remember really clearly, and I think this is what sparked my interest in probably an academic career, even though I probably didn’t realize it at the time, was, in high school itself, I can’t say I was entirely engaged academically. I did fine with grades, obviously. I wouldn’t have been to get into Gustavus otherwise. But I was never really inspired when I was in school, and I remember really clearly taking some of my first classes at Gustavus that first semester fall year, both in history and psychology, which ended up being my dual majors, with Tom Emmert, you know, in history?

Greg Kaster:

Oh, yes.

Joe Gaugler:

And then Dick Martin in psychology, both of whom ended up becoming my academic advisors. And I really took classes with them right away that first semester. And at that point, I really fell in love with the class experience, the learning experiences, and it’s something I think I’ve held with me all this time.

Greg Kaster:

Well, that anticipates a question I was going to ask you, and we should note that professors Dick Martin and Tom Emmert, professors emeritus at Gustavus, really were major figures on the faculty in psych and history, respectively. But it sounds like you didn’t know coming to Gustavus that you wanted to major in psych and history. Is that correct?

Joe Gaugler:

Not entirely.

Greg Kaster:

Okay.

Joe Gaugler:

I think psychology was something I was potentially interested in. History, not so much. And in fact, I think I might’ve… Yeah, when I first came into Gustavus, there was some sense that while I was potentially… I was considering computer science, and I took some of the introductory courses in computer science and didn’t really feel like it was a fit for me and I wanted to do moving ahead, and luckily, I had the chance to take those classes early to make those decisions. Whereas, based on my exposure with history, with Tom Emmert and others on the faculty, Dr. Nordstrom was another person I took courses with Kate Wittenstein, and as I progressed along after that first year, it became fairly evident that in fact, probably the two majors I wanted to focus my time on were psychology and history, because the course content of those two disciplines were among the ones that excited me the most.

Greg Kaster:

And that’s Byron Nordstrom. In fact, I’ve been telling you before we started recording, I interviewed him for the podcast too, another professor emeritus in history. But I wonder, did you… Some people might think, “Why psychology and history? What does that… ” And apart from enjoying both, or finding both interesting and rewarding, did you find at the time, and have you found since, that they were/are complementary, including in your current work, either directly so or indirectly?

Joe Gaugler:

At the time, I probably didn’t realize this as much beyond interests I may have had in identifying certain historical figures and understanding how they developed and grew up, and how did that influence, perhaps, later decisions or involvement in key historical events per se. But now, I think you can see how they both influence each other, both at the individual level, but then at a larger sociological level too, I think, in terms of sociohistory. I think all of us are influenced by our past in some way, and that extends well beyond us as individuals. It also extends to our families. It extends to the various institutions we come into contact with on a day-to-day basis. And so applying and thinking of current challenges, issues, in society from a historical lens is pretty critical.

Now again, history isn’t necessarily predictive and it’s certainly not self-replicating, but at the same time, understanding the historical precedent of, again, issues related to public health, issues related to other key areas of interest, politics, policy, et cetera, is pretty critical. Otherwise, I don’t think we are in a position to make the right kinds of decisions.

Greg Kaster:

That, of course, is all music to my ears. I couldn’t agree more, and I know so many people, myself included, who have been thinking about, “Well, gee, in the current pandemic, what other pandemics have we been through?” And of course, 1918, the influenza pandemic comes to mind. But that’s so true, and I’ve actually come to appreciate that much more in my last, I don’t know, 15-20 years or so, the importance of history to public policy and policymaking decisions, as you just said. How can we make the right or good decisions if we don’t know anything about the way the past is informing the issues we’re trying to decide about, including in public health?

My memory is, and correct me if I’m wrong, that you already had an interest as an undergraduate, certainly by the time of your senior year, in gerontology or in aging. What is it that drew you to that in graduate school, and still draws you to it?

Joe Gaugler:

Yeah, I think it really came about based on my extracurricular work I had done at Gustavus, not so much anything that had happened in the classroom. One of the great things about Gustavus, at least I felt at the time, was there was a heavy emphasis on volunteering on a civic engagement part of students.

Greg Kaster:

Yes.

Joe Gaugler:

And how that manifests itself for me was really through volunteering at the time really at one of the senior high-rise apartments in St. Peter, where we’d just visit and play cards with the residents and that. That occurred, I believe it was my sophomore year. And then as I moved into my third year, one of the things I had wanted to do was to do a summer internship, and one of the internships that came about was working with Catholic Charities in St. Paul, and at the time they had a geriatric social work unit, actually. These were social workers who would do home visits, essentially do case management for older people in the St. Paul area that needed additional help and support.

And so I got connected with them, and I remember vividly the very first day, I went on a home visit with one of the social workers, and the home visit was to a couple. The woman was caring for her husband with Alzheimer’s disease. And right there, I saw firsthand what that experience was like as far as for the gentleman living with dementia himself and the challenges he was facing on a day-to-day basis, and he was very much in the moderate to severe stage in retrospect, now that I think about. And also too, the emotional impact that caregiving experience had on his wife. She would frequently break down in tears. There were other kinds of issues and challenges that she would go through on a day-to-day basis.

So at that point, when I saw that, I really felt, given my background in psychology and thinking of the future, this is an area I want to focus on. And it really just evolved from there, from volunteer work to the internship, to then later, in the summer before my final year, doing a summer undergraduate research experience here at the University of Minnesota, interestingly enough, in their psychology department, where I learned more about the science of adult development and aging, and then also what are the potential academic professional tracks that one could take in this area. So again, it was all rooted in my initial experiences at Gustavus, and interestingly enough, really rooted in, you could argue, the core principles of Gustavus, which I think has always been based on this kind of academic community synergy.

Greg Kaster:

Yes.

Joe Gaugler:

And that’s really what led me to pursue this focus in gerontology, and specifically in Alzheimer’s disease and long-term care.

Greg Kaster:

Yeah, I couldn’t agree more. You’re a case study or perfect example of what a Gustavus education can do, where you’re inspired by professors who inspire you to major in psych and history, and then you have that internship opportunity, also the community opportunity. And by the way, yes, service learning or community-based learning is alive and well at Gustavus, probably even more so now than when you were there, and just all those opportunities that helped steer you, I guess, in a way, or helped you steer yourself toward what you do.

As I was preparing for this podcast, this conversation with you, I was thinking about my own experience with my wife Kate Wittenstein, and caring for her great-aunt, who lived to be 100. She’d been in Florida, and we moved her from Florida up to Minnesota in one of the long-term care facilities here, where we were really just overseeing her care. She went from assisted living to memory care to the nursing home. But I was thinking about the cliché… So many people say that “aging is not for the faint-of-heart,” and I wonder about studying aging. What do you feel about that? Do you find… So many people think, “Alzheimer’s, dementia? Oh, my God, how depressing! Who wants to spend time studying that?” But what are the rewards of the kind of work you do for you personally?

Joe Gaugler:

In the end, I think the rewards for me really are, I’m immersed and focused on an issue that has immediate relevance to almost everyone I meet. You’re a perfect example. And oftentimes, when I talk with people, either in academia or definitely outside of it, it becomes pretty clear how common this is. I’ll give you some interesting stories related to this.

So a couple years ago, the Academic Health Center at the University of Minnesota, they had this event where once a month, Thursdays, it was kind of in a happy hour setting, they would have a faculty member come and speak to other faculty in the Academic Health Center about their research interests. Oftentimes, the faculty who attended these tended to come and hail from more basic science departments, so very much focused on issues related to, say, proteomics or genetics or again, viewing science very much through this basic lens. And so I was very much worried that, going there as a behavioral social scientist, that I would have to more or less defend my research and how I did it and my approach, which was admittedly very much in a psychosocial framework.

But what was so interesting when I went to the event is, no one wanted to really talk about my research per se. They weren’t questioning me about my studies or “Why did you do this or that?” All of them starting talking about their own caregiving experiences. “I’m caring for my mom. What should I do?” “We want to move Mom to a nursing home. What should I be thinking about when doing that?” It was all rooted in these personal experiences. And that’s one example of why I take great value in doing the work we do.

Another example is this, is as part of this position, I’ve been wanting to visit every county in Minnesota to give presentations on dementia and offer dementia education for free to attendees, to people throughout Minnesota, and then also too to have conversations to hear what’s going on in the lives of people on a day-to-day basis who are living with dementia or caring for someone living with dementia. I went up to Alexandria last year, I think it was in January or February, and it was really amazing the turnout that I got at this Alexandria event in particular, but then some others as well.

So in Alexandria, my first presentation was in the morning. It was in the local library, the Douglas County library. I don’t know if anyone has been there before, but it’s pretty small. It’s not very large, and we ended up getting a hundred people show up for that event. And then later in the day, I did an event with Alexandria Tech College. They have what they call a senior university, where every spring and fall semesters, they’ll bring in a speaker a month, and it’s open to all in the Alexandria area. And basically, 350 people showed up for that event. They basically had to… They were worried about the fire code, because so many people wanted to come to talk about and learn about Alzheimer’s disease.

So these are the kinds of things that I really, I guess, internalize when I think about, “Why are you doing what you’re doing? Why is it important?” It obviously matters to a lot of people. Again, when we’re younger, we have the response that you offered initially, Greg, which is “It’s depressing, why do you want to do this? It’s all downhill [inaudible 00:19:39].” But then when you actually starting talking to people and understanding, people take… It’s not just a journey that’s all negative. It’s not just a journey that is one full of depression and stress, although that certainly does happen. Let’s not lie to ourselves. But that being said, many families or others who provide care to people with dementia take a great deal of pride in what they do, and it’s a matter of great intimacy to them. And for me to be allowed to take part in that journey, to help people provide assistance where necessary or when asked for, in the end, that’s all, I guess, I can ask for.

Greg Kaster:

Yeah. I’m glad you said that, that it’s not all negative. That’s exactly right. That was the case of my experience with our great-aunt, who, maybe I said earlier, lived to be 100. Both in her case, some of it was sad to witness, but some of it was also funny and very humane, but the caregiving was just incredibly inspiring by the staff at the facility. And I’m so glad that you look at not just the individual going through dementia, but also the caregivers. That’s such an important part of your work, I know, and we’ll get to that shortly.

Maybe first, let’s have you say a little about the Center for Aging at the University, how you came to be involved in that, and also about, I think it was Robert Kane, I’m not sure about his wife Rosalie, but Robert and Rosalie Kane if you would.

Joe Gaugler:

Yeah, so both were towering figures in geriatrics and gerontology for many, many years. I’ll start with Bob. You know Dr. Kane, Bob Kane, was a geriatrician. He arrived at the University of Minnesota in the mid-1980s, [inaudible 00:21:38] the Dean of the School of Public Health. And he was Dean there for roughly three to four years. He stepped down. And what he did then was, he decided that he wanted to make the study of long-term care central to aging research at the University of Minnesota. He embarked on a really novel campaign to raise funds to create what eventually would become the Minnesota Long-Term Care Chair on Aging, and this chair was endowed, not just from one individual, which is usually what happens when these special types of professorships are endowed, but in fact, he was able to solicit donations from many, many organizations and individuals and families across Minnesota to create this Minnesota Long-Term Care Chair on Aging.

And so it was initiated in 1989. He was named that chair at the time, and soon after that, five years later in 1994, he created the Center on Aging at the University of Minnesota. The goal of the Center on Aging was really to be a university home, a university community for students, faculty, and then staff and others as well to more or less come together and coalesce around key issues related to aging. So Bob led that center from 1994 to around 2017, and that’s when he passed.

So at that point, I was in the School of Nursing at the University of Minnesota. I started at the University of Minnesota in the School of Nursing in 2005, so I’d been here around 12 years when Bob passed. And to take a step back, I had known Bob for a long time and collaborated with him. I did what was called a post-doctoral fellowship at the University of Minnesota after I received my Ph.D at Penn State, and so that’s where I first met and started working with Bob and Rosalie. So I was colleagues with them, and had been colleagues with them really since 1999, roughly, and so I’d known them pretty well.

And when Bob passed, it was a major loss to aging research, and really geriatrics and gerontology in general. Bob was a pioneer in understanding how we deliver care to older persons, what are novel, innovative models of care that could result in better outcomes for older persons as well as others, and really he was an incredible intellect, very sharp intellect, an intimidating one, too. When I first met him, it was challenging to work with him just because he was the type of individual who, at first, would seem quite abrasive. He would dismiss ideas he felt weren’t worthy, and it took a certain type of person to overcome that to continue working with him, and luckily I was able to do that.

One of the ways I was able to work with Bob, it’s interesting linking this back to Gustavus, is, I remember a coach telling me, “When you’re yelled at on the football field, never worry about how someone says something. It’s what they say.” And I took that to heart when I listened to Bob, because more often than not, even though he might say things that we weren’t necessarily used to an interpersonal level, everything he often said tended to be fairly accurate. So by keeping that in mind, it helped both of us forge, I think, a very productive working relationship.

Greg Kaster:

It’s funny you mention that, because I literally was going to ask you, or quip/half-joke that your football experience must have prepared you to cope with that abrasive style!

Joe Gaugler:

Yeah, it definitely did, Greg, and [inaudible 00:25:23] that was interesting now that I reflect and think back on that. But one of the things that was interesting working with Bob, too, and again, getting back to this whole caregiving issue, is Bob, I think, became even more interested in research on caregiving after he himself had to start going through caregiving. He and his sister cared for his mother. It resulted in two really interesting books that he wrote, one called It Shouldn’t Be This Way: The Failure of Long-Term Care, and the other is called The Good Caregiver. Both, I think were deeply rooted in his experiences caring for his mother.

And so while that was happening, and while my research was evolving in this space of family care, dementia, Alzheimer’s disease, long-term care, I think we really became close colleagues. And so when he passed away in 2017, it was a loss for many of us, and many of us at Minnesota. And so both the Endowed Chair that Bob had founded and held, as well as the Center on Aging, more or less did not have direction after he passed. Basically, in terms of his stature, he wasn’t easily replaceable. But the opportunity raised itself, and I was invited to apply for the Endowed Chair in Long-Term Care & Aging, now called the Robert L. Kane Endowed Chair in Long-Term Care & Aging, and rightfully so. And I was lucky enough to be offered this in 2018.

And along with the Endowed Chair was also the opportunity to more or less redesign and initiate the Center on Aging again at the University of Minnesota within the School of Public Health. It’s now called the Center for Healthy Aging and Innovation. We really spent the last 18 months or so redesigning the Center, really thinking carefully about, “What is our mission and vision now as a center on aging? What do we want to achieve and accomplish? How do we want to design our Center? How do we want to make it a truly collaborative place for faculty, students, and staff, as well as individuals outside the University of Minnesota, to engage with us to help us better understand the aging experience?” And it’s gone very well, and we’re actually ready to launch the Center for Healthy Aging and Innovation early September. So it’s been a lot of formative work getting this off the ground, but we’re very excited about what the future may hold for the Center.

Greg Kaster:

That sounds exciting. Congratulations on that. And then, what about Rosalie? Was she collaborating with Bob on the research?

Joe Gaugler:

Yeah, Rosalie and Bob together, they were a formidable academic and intellectual pair. They were different personality-wise. Rosalie was trained in social work, so her academic background was very much versed in social work. Her focus and emphasis was really on, how do we and how can we achieve and measure and understand what many of us call person-centered care in residential care settings, so understanding how can people live the best possible life that they are able to within residential care settings.

I think her work was very much formed in the 1970s, at a time when there was much criticism, much work focused on how long-term institutional care for older persons really was of poor quality, in some cases wasn’t safe for many older persons, and there were many key anthropological studies, ethnographic studies of nursing homes that occurred out of that period. And out of that came Rosalie and her work in trying to really reframe and redesign long-term care so it can better meet the needs, can better help, again, older persons live  what she called “a life worth living.”

And that’s where her work was most influential. She participated in several White House conferences on again, I believe. She was very central to what’s called the culture change movement in nursing home care, to really, again, give people choice in residential long-term care, trying to have residential care settings understand who is it that they’re caring for. You need to get back to history again. What is the history of the person I’m caring for? Who were they? Who are they? And how can you redesign care around that and that understanding versus making it a solely task-based enterprise? And I think Rosalie’s work influenced all of that.

And both of them together, they published many books together and conducted many joint projects together across different topics related to long-term care. And so again, losing both of them more or less is the end of an era in some ways in the field and discipline of gerontology and geriatrics. At the same time, it also has given us a strong foundation on which to build off of in terms of how we want to pursue scholarship in aging for the future.

Greg Kaster:

Yeah, that’s just a wonderful story, and that’s also history, right? Your own connections, the Center’s connection to that history that you’re going to build on, and I know you will do it so, so well. Talk a little bit about your research. Maybe we can start with the cared-for. What are you learning about, what questions are you asking about memory loss? And then from there, we can talk a little bit about your research into the caregivers.

Joe Gaugler:

Yeah, I think a lot of our work in my team really focuses on, how can we best support people living with dementia and their families? Are there innovative ways to do so? Are there ways to do so in the community itself? I think if you broadly try to describe my research in one or two sentences, that more or less would encompass it. I think the one topic I’m coming back to a lot, the more I think about long-term care in the U.S. and family care, is really the fact that caring for older persons on the part of families, friends, acquaintances, it’s most often families, but others can also care for older persons with health needs who aren’t paid, how important this is on a public health level.

And the reason why I say this is the fact that, when you look at long-term care in the United States, usually when we think of long-term care, the first thing that comes into our minds is a nursing home, right? But in reality, long-term care is the provision of ongoing help and support to a person with a health need over time, and if you use that as a really rough definition of “long-term care,” in fact, the individuals most likely to be involved in long-term in the U.S. aren’t nursing homes, not home health aids. They’re families. 80%, or more than 80% of older persons with health needs, they receive the care they need, sometimes solely the care they need, from these unpaid individuals, like family members.

So number one, you can see families themselves are the bulk of long-term care in the U.S. They’re the core element of it. But alternatively, can we continue to rely on families doing this in the future? As you noted, there are more older persons than ever before, and that’s not necessarily a bad thing. That’s a great public health achievement that we’ve been able to live this long, and there’s so many of us living long and fairly healthy at this point.

Greg Kaster:

Thank you.

Joe Gaugler:

Yeah, so [inaudible 00:33:04] there’s always different ways to think of this. But with that being said, one thing we do know is old age is a consistent risk factor for many chronic conditions. Because of the advancement of medical care in the U.S., people are living longer with chronic conditions than ever before, thus necessitating help and support. Because of the way healthcare has been designed and delivered and paid for in the U.S., families are having to assume more and more responsibilities for providing care in home-based or community settings, for example, the drive to discharging people out of hospitals sooner and quicker, generally for cost efficiency reasons.

But that being said, you again have families serving the central core need for long-term care, but when we look at the future, because a number of, again, sociodemographic, historical trends in terms of women’s increased participation in the labor force, currently family caregivers for older persons, two-thirds of them are women. But as women have increasingly been involved in the labor force, that, along with trends such as divorce, with lower fertility rates, all of those combined over the past several decades has meant that in probably the next 20 to 30 years, the number of family members available to care for older persons in need is going to drop considerably. I’m almost… The ratio now is roughly… There’s roughly seven unpaid individuals for every older person who needs help in the U.S. That number’s going to drop to roughly three to four in the next 20 to 30 years. How are we going to overcome that gap? What are we going to do? How can we supplement those families who are currently caregiving or will be caregiving, and at the same time substitute for the potential drop-off of family caregivers?

That’s why I think this is a really critical, important public health issue. Again, it’s not one necessarily that elevates to the top of policy discussions per se, but that being said, it is one of, I would argue, considerable concern. Who is going to care for older people if families or other unpaid individuals aren’t available? And so when thinking of that and thinking of that context, this is where I think our research tries to operate in. What can we do to identify and develop and evaluate innovative services/programs for caregiving families or people living with dementia or other chronic health conditions that can offset the need to provide potentially stressful care and assistance?

Greg Kaster:

And hopefully the Center can help elevate all of that to the top priority. I think it should be. Of course, I have skin in the game as someone who’s about to turn 67. Speaking of innovation and everything you just said, if you could design the Gaugler, the ideal system for long-term care of the aging, what would that look like? What would some of its hallmarks be?

Joe Gaugler:

Well, I think first, it would be, and some states have made more progress on this than ours have, unfortunately, is first, is rethinking how we finance long-term services and supports. When I use the term “long-term services and supports,” it really means the gamut of programs available to assist older persons in need. And I think first and foremost, we probably have to rethink, “How do we finance long-term services and supports, particularly community-based long-term services and supports, so when we or our relatives are in the situation of needing help, that they can access and obtain that help?”

One of the issues and problems, and again, depending on one’s political lens, you can interpret this in different ways, but one of the key concerns, I think, when thinking of how we care for older persons in the U.S. has been, many times, it’s too expensive. It’s so expensive for people to obtain help and support, even community-based care and support. Nursing homes by and large are oftentimes priced well out of what we can afford. Depending on the statistic you look at, nursing homes on average will cost $7,000 to $9,000 a month.

Greg Kaster:

Right. Yeah, no, that’s-

Joe Gaugler:

Very few of us are saving that amount of money to pay for nursing homes. Very few of us are using or have long-term care insurance to offset that, and even if we do have long-term care insurance, the market is in such flux, many of the long-term care insurance providers didn’t anticipate for older persons to be living this long or the ongoing need for the level of support. So again, that didn’t necessarily work, having a purely private long-term care insurance market. So what are the solutions to this?

Well, one is, can people save for, say, using community-based care, which isn’t as expensive, like, say, home health, adult day programs, other types of various community-based supports. Two, if not offset the need for residential long-term care, like a nursing home, at least delay the need for it for some period of time. And so again, the issue becomes, is who would pay for that? Many of us don’t save for the need for long-term care. We just don’t do it. It’s not something we plan for, unfortunately. So some states have begun looking at innovative ways to potentially finance these community-based long-term services, of course, with the understanding that if people use these supports, it can help offset the very costly need for more formal residential long-term care.

The one state that’s doing, I think, exciting work in this area is Washington. Washington this past year, they passed a bill. It’s a state-financed long-term service and support system. It’s called the Washington Trust Act, I believe, and what it does is, it’s based on a payroll tax where people who are employed for a certain period of time, they pay into an account that they can then use to purchase long-term services and supports. They can accumulate up to $36,000 in this account. Now, does $36,000 mean a lot if you need a nursing home? Not really. But it means a lot if you can use those funds to pay for daily attendance in an adult day program, pay for home health aid, pay for home modification. Those different kinds of programs that are out there, these funds can be used.

Now, I will say one thing that I am excited about. The Center for Healthy Aging and Innovation, we put on a forum this past January on what are the options to refinance long-term services and supports in Minnesota. There are many, many other models beyond the Washington model that could be considered, and we’re hopeful that those conversations will lead to some policy progress in this area.

So that in part, I think, answers your question, Greg, in terms of what I would see as the ideal kind of long-term service support program. One is a program that allows individuals to access needed help and services, primarily in the community, before they actually require residential long-term care. I think the second part of that to me would be, in addition to having these services and supports available, ensuring that the quality of them are as high as possible. And when I say “quality,” is that, are these programs that are provided, are they based on evidence that we know is associated with positive outcomes on the part of older persons, caregivers, et cetera? That’s more of a question of dissemination and implementation of science into day-to-day practice and services. That’s another area of great interest of mine.

And again, in reflecting on that and thinking of the whole point of this conversation, Greg, linking it back to Gustavus, we were talking earlier about service learning, taking academics and your academic experience and how you apply it in the community. I would argue my interest in dissemination and implementation, or taking research evidence and figuring out the best ways to put into practice, is very much based in that same philosophy in a lot of ways, which is, it’s not enough to simply conduct research or publish papers and a journal article. I mean, that’s great. In academia, that’s how we’re incentivized. That’s wonderful. But beyond that, many, many, and we know this… It takes on average 17 years from an innovation that’s published in a research journal to actually reach healthcare practice.

Greg Kaster:

Good Lord!

Joe Gaugler:

That’s really unacceptable.

Greg Kaster:

That’s unacceptable.

Joe Gaugler:

If you’re a taxpayer, it’s utterly unacceptable! Time and taxpayer money is invested in delivering, say, conducting randomized control trials on some kind on intervention or program. If it’s shown to work, why is it just sitting on some shelf in an academic journal, or in this case, digitally in some journal somewhere? What can be done to take these innovations in put them into practice? And more importantly, as scientists, how can we design our interventions to ensure that if they do indeed work and, say, reduce caregiving stress, help people live at home longer, if they work, how can we ensure that we can truncate that pipeline, truncate that pipeline so the scientific evidence is ready to go into the field more quickly and more rapidly?

That, to me, is another key element to this ideal long-term care system, where you have a long-term care system that you can call it, and I’ve heard this term used in other healthcare systems, as “learning health systems,” having a learning long-term care system where evidence is generated and then it’s cycled back into day-to-day practice so when people are receiving these services, they’re getting the highest quality service possible that they can feel fairly confident works.

Greg Kaster:

I think that’s incredibly important. Couple of observations on my part here: one, yes, the quality of the care is really important and that care ought to be based on evidence and scientific understanding. It’s important to have companionship, right? We saw that with my wife’s great-aunt, but it’s also important to have people who know something about the outcomes linked to certain kinds of activities. I’m thinking here about recent studies, you can say more about this if you like, but recent studies about the role of art and music in caring for Alzheimer’s patients.

The other thing that I think you’re saying that is really important is that getting that time gap shrunk, and maybe here there’s a silver lining in the pandemic where this race to get a vaccine… It looks like we might get a vaccine much sooner than would typically be the case, maybe that will have some positive spillover effects into other areas of research.

Joe Gaugler:

Yeah, it’s interesting. If you’re using the pandemic as an example, and again, in this larger context of quality of long-term care, healthcare, et cetera, is with the pandemic and the development of the vaccine, it more or less spurred on the need to truncate this implementation timeline per se to the degree which you’re doing these rapid, randomized control trials on very large populations, gathering real-time evidence in many instances, and then having that real-time evidence to make determinations as to, “Does this actually work or not? And as importantly, not only does it work, does it also not have adverse effects?”

Greg Kaster:

Good point.

Joe Gaugler:

Which is very important, I think, really in pharmacological interventions like drugs, but then really in any intervention per se. So it’s having a strong understanding for both of those sets of data points.

And then, and I think I’m assuming this, we’re going to see if it actually happens, to me the implementation consideration here is, okay, you find a vaccination that works. Number one, can you manufacture that vaccine quickly enough and to the extent that we need in the U.S.? I think that’s very much a question that is up in the air. It’s not clear to me if we can. I hope we can, of course. And then number two, once that’s manufactured, can you get it and deliver it effectively to the population, which then becomes a public health issue? You have this vaccination. You develop it. Do we have the public health infrastructure to get it out to the people who need it most? Will we create some kind of a tiered process where the people who most need the vaccination get it first?

In an ideal world, you would answer, “Yes, we have all these things in place.” Recent history, I think, suggests that we may want to be more skeptical than perhaps we wish we didn’t [crosstalk 00:46:27]-

Greg Kaster:

Yeah, history offers hope, but it also offers a sobering… It sobers one as well, even as it offers hope. I think about how long it took for certain vaccines to be developed and also to become effective and safe.

The other thing, of course, and I know you know this, certainly as a history major and as a public health expert, is this anti-vaccine movement, right? There’s also that question. So let’s imagine we enough vaccine. We can do it. We can get it to… How many people are going to refuse to be vaccinated, and what might be done about that? I don’t know if you have any thoughts about that, if not.

Joe Gaugler:

I definitely have thoughts about that in terms of the righteousness or lack thereof of those who would refuse the vaccine. From a scientific standpoint, there’s very little, I think, reasoning to do so. I think most public health professionals would agree with that. To me, but again, stepping back from that, the historical, we’re coming back to history again, is how anti-science has moved and operated in the U.S.

Greg Kaster:

Yes.

Joe Gaugler:

How it’s influenced policy, politics, also perhaps even our public health infrastructure too. It’s a movement, like all… Anti-vaccination probably seems like it’s a fairly recent phenomenon, but I would argue it probably has historical precedent-

Greg Kaster:

Absolutely.

Joe Gaugler:

In how science has been perceived, and how science is interpreted by people on a day-to-day basis. Now, admittedly, scientists might be very much at fault in this whole conversation in terms of how scientists have communicated medical information or research findings to the greater public, how that information is disseminated effectively. So certainly, the biomedical science infrastructure could do much better in terms of how results, scientific information is communicated to the greater public. There’s no doubt about that.

But that being said, I think there’s a populist vein… And quite frankly, I don’t think it necessarily exists on side of the political spectrum versus the other.

Greg Kaster:

No, I agree.

Joe Gaugler:

You could make an argument that most of us, as a kneejerk reaction, would say, “Well, this is mostly coming from the right of the political spectrum,” but quite frankly, the far-left of the political spectrum in some ways has had some degree of animosity towards science and how it’s conducted as well. And that’s an entirely different conversation as to whether it’s warranted or not. In some cases it is warranted, and in other cases, it’s not. And it does influence, again, when you have an instance like the pandemic, COVID-19, an instance of immediate public health import, it influences how we get out of that.

Greg Kaster:

Absolutely.

Joe Gaugler:

How we experienced it up to this point, how we got to this point, and then how we’re going to get out of it. I think all of these things are important to consider.

Greg Kaster:

Absolutely. You’re absolutely right about the anti-science… And I think you’re right. Some scientists themselves have… All academics, we have a responsibility to try to convey and communicate to the general public the importance of what we’re doing in our research and what the importance of our findings is. And you do that, by the way. One thing I like about your work: you’re very much engaged with the public, whether on TV, in print, or, as you mentioned earlier, speaking before various gatherings. Incredibly important. And one thing I do really take pride in at Gustavus is its strong science program. I sometimes think our tagline should be “We believe in science,” but as you say, that’s another story.

Joe Gaugler:

I’ll say this, Greg, because this is an interesting conversation to have. This is where it moves into more philosophy of science. I will say this, is oftentimes, when we think of science, we think of science through the lens of very much the classic sense of “There is truth out there, truth can be measured, it can be empiricized, and in order to understand truth, we must do it in an as unbiased approach as possible.” It’s the classic positivist/post-positivistic scientific paradigm, per se.

That’s not to say there aren’t other paradigms that are very worthwhile that operate much differently in terms of our understanding of truth, whether we can ever be truly unbiased, which I think is very important to consider when we’re conducting our research. Are we ever truly unbiased when we are studying phenomena X, Y, or Z? I think individuals in basic science oftentimes approach questions, not all of them of course, but many times approach questions of phenomena of interest solely within the positivistic/post-positivistic lens, and really don’t even question or challenge it oftentimes. Whereas those of us in behavioral/social science, I think it’s been a much more robust scientific conversation that’s really has occurred over the past 35 years or so about, can we ever be truly unbiased? Again, what is the nature of our relationship to truth and reality, and how does that influence the questions we study, the methods we choose, et cetera? And I don’t think that’s an anti-scientific conversation. I think it’s a really [inaudible 00:52:18] conversation.

Greg Kaster:

No, I agree. And it’s a conversation we have in history, right? You may remember. So right, I try to tell my students, the question isn’t “Oh, this historian’s biased, therefore the history here he wrote is bad.” No, I think some level of bias is inevitable, including in science as well, because we can’t escape who we are or what we are, but is it good science, is it good history as measured against the discipline’s standards and criteria?

Joe Gaugler:

And I will say this because I think it’s important to mention, is we’re in the era now of greater understanding of the pernicious effects of racism, certainly in public health, after the murder of George Floyd. And I think the issue of racial bias, how that’s influenced, for example, the type of research that’s been done, how that research has been interpreted, et cetera, is it’s more important now than ever, so understanding the role of bias in the kind of research we do has a great deal of relevance. It’s something I think about a lot when we do our work.

Again, and [inaudible 00:53:29], a lot of our work can sometimes… Sometimes it is in this post-positivistic lens. I’d say a lot of it is in terms of the methods we utilize. But we’ve been, and I’ve been very interested, in addition to simply collecting and analyzing numbers, is also understanding narratives, the narratives of our participants, caregivers, people living with dementia, care providers, whether they’re professional or otherwise, and taking that information and merging and integrate it alongside our empirical work, because I think in a way, it gives a much more robust picture and a better explanation for why we’re seeing what we’re seeing in our empirical data.

Greg Kaster:

Yeah, I’m reading a little bit about that research that you’re doing with collecting narratives of… Is it narratives of caregivers only or patients as well? I can’t-

Joe Gaugler:

It varies depending on our study. A lot of the times, the reason why I like collecting this open-ended information from people, whoever the participant may be, whether it’s the person living with dementia or the caregiver, whoever else, is, a lot of times when you’re doing research, and I think you see this in a lot of studies, you may find an association between X and Y. “This intervention was shown to influence this outcome,” or maybe “there was no effect.” And then, as a researcher, you’re more or less left to speculate in terms of interpreting this association or lack thereof. The nice thing about getting narratives is, it starts to give clues to the researcher as to why or how this relationship is operating. Why or how does this intervention actually work? What is it that works?

And again, getting back to this whole concern about implementation, a lot of times as researchers, what we are most valued for is doing a randomized control trial, showing whether it works or not, and then publishing that. But what has happened is you have that information, but then if you try to take… Say I take the intervention and go to a community care provider or healthcare system and say, “Hey, look, I have a great intervention and it works! Let’s adopt it! Let’s implement it!” Oftentimes, the concerns that come up is, “Okay, why do you think this intervention works? Why do you think it would work for the population in my healthcare system or the clients I’m serving? Is it actually able… Why do you think staff would want to deliver this?” Et cetera, those kinds of key process questions.

Narrative data can actually help answer those. And if you collect those simultaneously with your empirical data, it allows for, again, creating results that are much more useful in the end.

Greg Kaster:

It’s also… It makes me very excited to hear you speak about this because it’s, again, relevant to history as well as science, that the narratives are a kind of oral history in a way, and the way you describe working with them, seeking patterns, clues, it’s very much a part of historical thinking, historical detective work.

We’re out of time, and I would love to continue talking, but in the minute or two remaining, how about some advice for entering Gustavus students? In your perspective, what key pieces of advice would you give the entering class?

Joe Gaugler:

It’s funny. I was thinking about this earlier in our conversation. I work with many students, and sometimes they’ll ask me for advice and such, and have many family members too, and I don’t know if I would recommend they do what I did, which is basically, you walk on a campus and then right there make a decision to go to that institution! It’s probably good to shop around and talk to students and get a better understanding of what the college is like, and Gustavus is included.

I think any time a student is making a decision, it’s really about, number one, does the place I’m going to, does it give me the opportunity to pursue what I want to pursue intellectually, academically? And sometimes students, when they’re at that age, they may not know the answer to that question per se, but does the campus, does the place I’m looking at provide the sense of community/community resources that would allow me to do that? And again, that’s why Gustavus was such a special place to me. A lot of places don’t necessarily offer that or, if they say they do, they can’t necessarily point to how their college is an actual community.

And with Gustavus, I think the proof is in the fact that… Look at how many multiple generations of family members have gone to Gustavus. That’s pretty impressive when you think about it, and it shows that there’s this sense of community in Gustavus, and sometimes it’s hard to put one’s finger on, that makes it a fairly unique place. I’m sure there are other colleges that also boast that too, but there aren’t many that I know like Gustavus. And again, when I go out in the state, and I’m in different counties and such, and I say I’m from Gustavus, inevitably someone will come up and say “Go Gusties!” or something.

Greg Kaster:

Yeah! I agree. Kate and I were traveling in London once and ran right smack into, I think, a member of the board and an alum. All well said. We’re so glad you chose Gustavus on that day of your visit, and congratulations on your current position and best of luck with all your work. Great to talk to you and I hope… Let’s see, it’s been more than 20 years, maybe, since we reconnected, so I want to do so before I turn 90, if I’m lucky to make it that long.

Joe Gaugler:

I hope so.

Greg Kaster:

So thanks so much, Joe. Take good care.

Joe Gaugler:

Thank you, Greg. Really appreciated the opportunity.

Greg Kaster:

You’re quite welcome, likewise. Bye-bye.

Joe Gaugler:

Bye.

 

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Media Contact: Director of Media Relations and Internal Communication JJ Akin
jakin@gustavus.edu
507-933-7510

 

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