24. Improving the Current Body of Evidence on Dementia Care with Dr. Eric Larson

Published May 5, 2021

Listen and subscribe to This is Growing Old, a podcast from the Alliance for Aging Research

Show Notes

According to a new report from The National Academies of Sciences, Engineering, and Medicine, the current body of evidence on dementia care does not reflect the experiences of diverse populations.

On the latest episode of This is Growing Old, Alliance President and CEO Sue Peschin interviews Dr. Eric Larson, a senior investigator at the Kaiser Permanente Washington Health Research Institute, and chair of the committee that wrote the report.

Episode Transcript

Sue Peschin:

Hello and welcome to This is Growing Old, a podcast from the Alliance for Aging Research. My name is Sue Peschin and I’m the President and CEO of the Alliance for Aging Research.

Sue Peschin:

According to a new important report from the National Academies of Science, Engineering, and Medicine, the current body of evidence on dementia care does not reflect the experiences of diverse populations, including people of different races, ethnicities, ages, genders, sexual orientations and abilities. Here to talk about this report and why it is so important is Dr. Eric Larson, senior investigator at the Kaiser Permanente Washington Health Research Institute and chair of the committee that wrote the report. Dr. Larson, it’s an honor to have you on today. Thank you so much for joining us.

Eric Larson:

Thank you for having me. I’m looking forward to this.

Sue Peschin:

Great. Well, as I mentioned, you chair a National Academy of Sciences, engineering and Medicine committee that recently released a report titled, Meeting the Challenge of Caring for Persons with Dementia and Their Care Partners and Caregivers: A Way Forward. What was the purpose of the report and why release this report now?

Eric Larson:

Well, the purpose of the report was to review the evidence that had been published and the committee was to write a comprehensive report saying what we found and what we could recommend for implementation and dissemination for caring for persons living with dementia and their carers and caregivers. And why now? It’s one of these things where the need is just so great and as people began to realize more and more how many people there are and some of the suffering that people and their caregivers endure, it clearly needed to be done. And part of the reason is because so much that has been written about this disease has been around the neuroscience and looking for a cure. And what the committee was charged to do was to look at care, how do you care for people and do a better job caring for them? Representing their personhood, respecting their values and dealing with them where they are, as opposed to constantly thinking for some kind of magic bullet to make this go away.

Sue Peschin:

Well, the report found that the current body of evidence on dementia does not reflect the experiences of diverse populations. Can you tell us why that was the case and how we can promote research that better reflects the diversity and ranges of experiences of people living with dementia?

Eric Larson:

Yeah, that’s a very important point that the committee came to and we wanted to highlight that in the report. Why is that the state of nature, if you will? It probably is not unique to our area of caring for persons living with dementia. We do have a lot of disparities and structural racism and there are underrepresented populations who have only recently become to be recognized. I think over time what’s happened is the body of research has been done in the academy and often in the case of dementia care research, it’s done in centers that draw off people who work their way into a research center and that’s not the real world. And the committee knew that and there are very few places that really address the issue of how do we find everybody and not only include them in our research, but also address the disparate conditions under which people live in our country?

Eric Larson:

And so I think that was an important part of the report. And I also think that at least the NIA and most of our federal funding agencies are essentially telling researchers, “You better get your act together.” And we now are always looking for ways to improve both the subjects that we see in our research and make sure they’re representative, but also the research workforce, the faculty and staff that are part of research teams. And I’d like to think that’s changing. It’s been a long road though.

Sue Peschin:

Yeah. Yeah. I’m very glad that that was one of the focuses of the report. I think it was good to call it out. It’s a good time in the moment that we’re in. It was good to see. And we wanted to ask about that. I just want to back up a little bit and ask you to talk a bit about the main findings of the report overall. And one thing we sort of noticed was there was mention of caregiver and then care partners and wanted you to just let our listeners know what you see as the difference there. If you could just talk about the main findings of the report and then specifically with regard to caregiver and care partner.

Eric Larson:

Okay. Well, the main findings of the report. I think one of the things that’s important in the report is a table that appears even before we make any recommendations, which talks about principles and there’s a list of principles. And those principles include recognizing a person’s personhood. I think all too often, people think about individuals with Alzheimer’s and dementia as being not quite human, that’s just not true. And so one of the first recommendations in that principles was recognizing personhood.

Eric Larson:

And the second was focusing on wellbeing. I think too many times, we researchers tend to focus on what we want to know about, which may not be what our subjects or their carers and caregivers want to know about. We advocate this notion of measuring and aiming for wellbeing and that wellbeing can be quite individualized.

Eric Larson:

In terms of the actual recommendations, there were two programs we felt had good enough evidence for implementation and dissemination and they are the collaborative care model and so called REACH II. And those two recommendations are in the report. And the way we phrase the recommendation is important because we want it to imply that this is a continuous improvement kind of approach that you’d want to take when you institute this sort of work. Care of dementia persons and their carers and caregivers is complex. The disease is progressive. We used to say in the early days of my career, you’ve seen one person with Alzheimer’s disease, you’ve seen one person with Alzheimer’s disease. We emphasize that. And then you asked me one other thing and I’ve forgotten what that was as I kept talking.

Sue Peschin:

That’s okay. We notice that there was a mention between caregiver and care partner.

Eric Larson:

Yes of course. Yeah. That was really, really an important and interesting part of the committee’s work, where part of our work was reading this giant report that the evidence based practice center had done. But then we also had conversations with community members and advocacy groups. And the notion is that there are caregivers where the relationship is one of caregiving, because that’s what the person living with dementia needs, but care starts at a very early stage. And in many cases, the person is more a care partner where the there’s a bidirectional dyadic kind of relationship in which the person living with dementia and the carer are care partners, not just a caregiver providing for another person who is dependent on that caregiver.

Sue Peschin:

Ah, I love that. Yeah and it’s also, I think not infantilizing the person that has the dementia, to allow them to do what they want to do for as long as they want to do it. And instead of just sort of taking over, because it seems like the easiest thing to do.

Eric Larson:

Yeah. I love your use of the word infantilizing, because I think you can see this all over and when you take the time to listen to a person who is affected by dementia, you often realize they’re so different in terms of what a person is thinking about, what a person wants. And they’re able to express that, it just is a little different than the way they had the ability to express it maybe five years before they became demented.

Sue Peschin:

Right, right. The report found limitations with a lot of the existing evidence and you mentioned REACH II but there were notations made earlier on, even in the earlier drafts of the report about limitations with even that program, even though it’s been adopted system wide by the Veterans Association. And I was just wondering from your perspective, why does research on nonpharmacologic interventions tend to fall short? And is there maybe a need to reconsider how these types of interventions are evaluated, moving forward different from randomized clinical trials for medical interventions, for example?

Eric Larson:

Yeah. I’m supposedly speaking as the chair of this committee, but I want to tell you that you’re asking me for some opinions and I think I’m happy to give them, but I’m supposed to say, this is the committee and this is Eric Larson. And I’ve been in the field since the late seventies so this is a tremendously complex condition and the situation in which people receive care is complex and different. And the randomized trial and the standards for how we do randomized trials and what is convincing, were developed for pharmacologic and for screening. And originally the US Preventive Services Task Force and the Canadian Task Force on the Periodic Health Examination sort of founded the field of, if you’re going to say something that’s going to apply everybody, you better have really good evidence. And if somebody is not sick, you better make sure you’re not harming them and that your evidence has to be very convincing.

Eric Larson:

That’s really tough for nonpharmacologic interventions. And so the committee to some extent, confronted that by going beyond just the randomized trials and we looked at time series analyses and so forth, but my own personal opinion is you have to develop a kind of weight of evidence and using multiple methods. The IMPACT Collaboratory, which is a big new effort, great effort funded by the NIA is beginning to do that. But it’s going to rely on pragmatic randomized clinical trials. And I think that over time, I would hope that some of our really, really bright statistical and epidemiologic colleagues can help us say, “Well, when is it convincing enough to be gold standard, even if it’s not a randomized trial?”

Eric Larson:

And I think we’ll get there someday. And in fact, people are already taking action on the basis of things that may not be as good a evidence, but that’s why we said in the report, “Think about this continuous quality improvement cycle where you make a hypothesis, you design a program, you implement it, you measure, you look to see if you’re getting the results you want or if you can improve and you’re constantly trying to improve that effort.”

Sue Peschin:

That’s very well said, I think. And you’re very familiar. the REACG evidence was first studied over 30 years ago now. It’s been around for, it’s certainly been looked at for quite some time. And so to your point, I think that’s a very well way to put it is when is enough enough in types of interventions that it’s a little less cut and dried than you would get with a pharmacologic? And speaking of pharmacologics, the evidence review, this was something that the Alliance actually weighed in on when the framework was first put out for comment. The evidence review didn’t consider combination interventions that use both pharmacologic interventions with nonpharmacologic strategies. And this is brought up a lot as clinical development trials go on with the FDA around are there behavioral interventions that are also put in place and all that? Considering that many people living with Alzheimer’s disease take one or more medications to help manage symptoms and several medical treatments are under study, do you think that this is an area for future exploration?

Eric Larson:

Yeah, I think my views on that are we do need to continuously evaluate not only behavioral and other so called management techniques, but also the drugs that people are getting. And in my own view, we need to figure out ways to determine if they’re helping or hurting. And there are in geriatric research, as you know, there’s lots of enthusiasm nowadays for de-prescribing and if you look at the preface that I wrote for this report, when I entered the field, we were tying people to Geri Chairs, we were putting feeding tubes down people and we were essentially putting them in chemical restraints and causing them to be more demented than they needed to be or to be falling or to be incontinent. And so, fortunately we’re doing less of that, which I would have considered harmful even then, but we still got a lot more work to do.

Eric Larson:

And I’ve written a book on this, Enlightened Aging it’s called, but the idea is not to always reach for the medication but to ask if you need that medication or to ask if it’s still needed if it’s one that a person is on and I think it’s an area, as you said, do we need more work? That’s easy to ask a scientist a question, of course, just show me the door and I’ll walk through it. But it’s really important that we do the right work. And that’s why this is important. This notion of personhood and wellbeing. When we work on these programs and or an individual person’s care, always ask ourselves, “How is that person’s wellbeing being served? Or are we serving ourselves as caregivers? Are we making it easier for our unit to operate by whatever we’re doing?” And sometimes that may be necessary, but by and large, the best approach is to think about that person’s wellbeing as the desired outcome.

Sue Peschin:

Absolutely. I’m a person who has a history of the disease in my family and my great-grandmother had Alzheimer’s and it was into my teens so I remember it very well. And my mother and I helped care for her and she had dementia related psychosis and there is a lot of stigma around those types of issues. And there is also a lot of guilt I think that family members have when they’re not able to talk someone out of it or direct someone out of it. I do think that there’s a balance and because of the stigma, we talk a lot in dementia about cognitive issues, but we tend not to talk quite as much about the difficulties for the individual, to your point, as well as for caregivers and care partners, with things like agitation and psychosis, depression, that are very, very common.

Sue Peschin:

I hear you and I definitely think there’s a balance. I certainly hope and I’m glad you walked through the door because I do hope to see research in the future that fuses the two approaches together. Because we need to understand that. We don’t want an either or situation where someone’s just getting medication or necessarily just getting a behavioral intervention if they maybe need something more.

Sue Peschin:

Much of the focus of dementia research has been on individual level interventions. Can you provide examples of community policy and broader system interventions that you think are worth exploring?

Eric Larson:

Yes I can. And there’s a broad range of them and as the report says, they just haven’t been studied. The one that came up and always comes up is the dementia communities in the Netherlands that have been around now for quite a while. And are they a good approach for certain areas? How do you create a dementia community from a standpoint of the needs and making sure people are safe and both physically and from financial and other kind of exploitations?

Eric Larson:

I just heard in the last couple hours that there’s been a bill introduced in Congress to ask CMMI to figure out how do you fund in the CMS fee structure, collaborative care? Now that to me is an example of a policy that begs for good research when we think about implementing that and I don’t know what Congress is going to do with the bill and I haven’t even had a chance to see it, I’ve just heard about it, but those are the kind of examples of things that I think we haven’t studied it enough. And if we do, we’ll probably advance the field and our ability, this way forward that the committee talked about.

Sue Peschin:

The CDC and others have projected that the number of people with Alzheimer’s and other forms of dementia is going to double by 2060, especially among minority populations. How do you think we can prepare for the caregiving demands? And having been a caregiver yourself, do you have any advice to people who may be in that position one day?

Eric Larson:

It’s a big question. It’s been one of those questions that has been around for a long time. I was on the OTA committee that led to the NIA advancing Alzheimer’s disease as that’s where this lives in NIH. One of our reports said in the eighties that minority ethnic communities are the fastest growing parts of the population. And now 30 years, it’s the same. I think we just need to be a lot more inclusive about our research teams and caregiving teams and realize that the culture affects how people experience dementia and how people are able to care for persons living with dementia or provide care as partners or as caregivers and embrace, if you will, the diversity, as opposed to this reductionist nature of science is always to try to harmonize as much as possible. It will be diverse and we should basically realize that.

Eric Larson:

And in terms of being a caregiver yourself, my wife and I we recently redid our durable powers and this that and the other thing. I’m 74 years old so I’m entering that golden age if I’ve not already entered. And I would began to learn about the disease, learn about the best way to care for the disease and also put yourself in the position of that person who you’re caring for or you’re a care partner with and try to know what that person would want. What would be a person’s goal for care or wellbeing? And focus on that and the skills you need to achieve that.

Sue Peschin:

Here’s a question that we ask all of our guests. When you were a kid, what did you imagine growing older would be like?

Eric Larson:

I knew what I wanted to grow older to be like and I’m a Norwegian American and my grandfather lived in another state on a family ranch, but I would have liked to have been like my grandfather. He lived on the ranch, like to ski, would hook up a tractor motor or to create a rope tow to go skiing. And eventually he would go to an area and he skied until he became too blind to ski. When I think about growing old in an aspirational sense, I would just like to stay as active and engaged as my grandfather did. And yet at the end, the best he could do would be to sit in his living room and just feel the sunshine and that’s also something I could imagine happening to me as I grow old.

Sue Peschin:

All right. Well, what do you enjoy most about growing older now?

Eric Larson:

Oh, I think the pandemic has made me really enjoy, I have a loving wife and that we could be partners in such close proximity for so long, but also my children, our children, between the two of us, we have six and we now have nine grandchildren. We have two little ones more and during the pandemic. We saw the last one this past weekend when we finally got on an airplane. And those are really enjoyable things, both staying the same in terms of intimate relationships and also seeing the change that happens with people growing up.

Sue Peschin:

Well, thank you so much. This has been such a pleasure today.

Eric Larson:

Yeah, and thank you. Thank you for having me. And if I could say a couple of thank yous myself, not just to you, but to the members of the committee for the National Academy and the staff that wrote the report and also to the research subjects that have been part of our research here in Seattle for all these decades, because we wouldn’t have learned anything if it weren’t for the fact that people do participate in research and want to give to others by being research participants.

Sue Peschin:

Lovely. Thank you. Thank you so much for listening to This is Growing Old today. Our theme song is City Sunshine by Kevin MacLeod. Props to Kevin MacLeod for City Sunshine. Please stay tuned for new episodes every other Wednesday and please rate and review us if you’re enjoying the show. Thanks for listening to This is Growing Old and have a great day.