Caregivers, Care Partners and People with Dementia: Brainstorming New Interventions for Dementia Care

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Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: My guest today on Dementia Matters is Dr. Eric Larson, a physician scientist and senior investigator at Kaiser Permanente Washington Health Research Institute. Dr. Larson is a national leader in Geriatrics Health Services and clinical research and has been elected member of the National Academy of Medicine since 2007. Dr Larson is here with us today to discuss a recent National Academies of Sciences, Engineering, and Medicine report on dementia caregiving interventions. Dr. Larson, thanks for joining us.

Dr. Eric Larson: My pleasure. Glad to be with you.

Chin: Before we jump into the recent report on caregiving interventions, I'd like to start out by asking you a question I ask a lot of my guests. What sparked your interest in becoming a geriatrician and Alzheimer's disease and dementia researcher?

Larson: That's a really interesting question and it harkens back to a fond memory when I finished my training. I was the chief resident at University Hospital in Seattle and a friend and colleague invited me to start a dementia clinic – the first outpatient dementia clinic in the country actually. The geriatrics and family services program, we called it. And I thought I knew everything because I'd been a chief resident. When I started seeing the people that we were seeing in our clinic as an internist, I realized what I'd been taught didn't fit with what I was seeing and what I was experiencing. Even when I went to the literature I would read papers and there's one paper in the Annals of Internal Medicine that I'll never forget on dementia, the silent epidemic or something like that. There was a table listing all the reversible causes of dementia in the elderly. I read through the papers, and all the papers were dementia in people under the age of 60. So it was like there's so much you can discover. At the same time, the needs were so great for these people. This was back in the late 1970s, so it was a long time ago.

Chin: Now the field of geriatrics needs more physicians, so what would you say to young medical students looking for a specialty and even considering geriatrics?

Larson: Well, I think from the standpoint of professional satisfaction, geriatrics has to rank way up there with almost any other specialty you can imagine. It's a specialty that you kind of grow into if you're young and you start out. If you're like me – I'm 74 now – all of a sudden I'm a subject. I've learned over these decades a tremendous amount and a lot of being, I think having a satisfying career is that sort of discovery – the lifelong learning aspect of medicine. You never master it, but you do get better and you feel that gain an understanding as pleasurable. At least I do.

Chin: And I would agree with you. I have great job satisfaction and reward in what I do as a geriatrician, but then knowing that, why do you think the field struggles to attract younger doctors?

Larson: I don't know. I mean I can speculate, but I do think that there is sort of a fear of getting older and there is a fear, I think, of being identified as somebody who just takes care of old people. I am a geriatrician in the sense that this is where I do my work, but I still think of myself also as a general internist. I got into all kinds of trouble at one point in my career because I argued that every general internist should be a geriatrician because you can't practice internal medicine over time if you're doing primary care without being a geriatrician and nobody was happy with that. I still believe that's true.

Chin: I think that's a really interesting comment because you're talking about stigma, right? The stigma or fear of getting older as a potential geriatrician, but obviously in the field that you work, in Alzheimer's disease, there’s a great amount of stigma too and that impacts the care that's delivered and the identification of it. It's a very interesting corollary that you've identified and it helps me segue, of course, into why we're here today, which is this report, this really important report that came out. The National Academies of Sciences, Engineering, and Medicine – they recently released this report called, “Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers.” So that's a mouthful but I think it's a really important –

Larson: – “A Way Forward.” It had that subtitle – “A Way Forward.”

Chin: “A Way Forward.” Thank you for correcting me. And so, what is the role of the National Academy of Medicine and why did it conduct and release this report on caregiving?

Larson: Well, the National Academy of Medicine was founded, I think, around the time of the civil war as the advisor to the nation on science. It was the National Academy of Science originally and the National Academy of Medicine came along about 50 or so years ago. And it was the same thing – to advise the nation on the science of medicine or science of medicine and health. You know, you qualify for membership. You volunteer and the academy is awarded support to take on meaty topics that need – the world or the nation needs advice on those topics. In this case, the National Academy and the National Institute on Aging said, ‘We need a consensus study report on this topic.’ And so a committee was formed and we worked for almost – it was three years to write this report because it involved not just convening a committee but setting the sort of parameters of what we were going to do and write about and then launching a search, an evidence-based medicine search of what is known and what qualifies to meet quality standards for proof. I've worked on a number of these reports but this one was a very, very important report. It took quite a long time because of this. The literature is thousands and thousands of papers out there.

Chin: Wow and I think that's important for our listeners to know. One, that you guys are all volunteers, that this is a collection of experts but they're all still volunteering to do this, and that, two, it took so long to review and then write this document.

Larson: Yeah, and we had consumers too. We had lay people who had an interest in dementia and especially dementia caregiving.

Chin: I'm glad you mentioned that too, to have make sure that that perspective was included. I guess with that in mind, can you offer us a brief summary of the findings or the key things that you think our audience should know about this document?

Larson: Yeah. I mean it starts with the title – “Meeting the Challenge”. I think it's evident to a lot of people, if not most people, that there is a challenge in terms of providing humane and effective care to people who are living with dementia, especially the people providing that care, the caregivers and the care partners. You know, I think that some of the key points of the report are a table. It's called Box 2.1. We came together with a set of principles for caregiving. There are six of them. The first is person-centeredness. You know, we have to think about persons living with dementia as persons. All too often I think that can be forgotten and it's not good. A promotion of well-being – it's not promotion of, you know, preventing cognitive decline necessarily – it could be – but it's well-being. That should be the target of caregiving. Respect and dignity – treat people with respect and dignity. Justice is the fourth principle, and again meet people with equal need equally. Racial, ethnic, sexual, cultural, and linguistic inclusivity. The last is accessibility and affordability. I don't know that anybody had ever enunciated those quite the way we did and that to me is probably the most important part of the report, establishing that. There's another table that follows looking at the core components – and you from an ADRC and a geriatrician, this would not be news to you – you know, detection, diagnosis, advanced care planning, the first and the last of several different boxes. Then what we did was we consumed the report that the Minnesota Evidence Practice Center developed for what evidence is out there. At the end of the day, we came up with two general categories of services, if you will, that would qualify for inclusion in efforts to disseminate because part of the question that we were asked is, is there anything ready beyond principles to disseminate and to begin to promote as ‘this is a good way to care for persons living with dementia and their care partners and caregivers’. The two were collaborative care models and those are directed to those providing the care and the principles for providing the care being collaborative care, and the other is these multicomponent interventions for informal caregivers and that's the REACH-type program. Those two were the two elements, if you will, of here's what we can start to work on as a country trying to do a better job or that way forward for caring for persons living with dementia.

Chin: And I'm actually going to get to those two particular programs in a second. Before I do, I wanted to ask you, what are the current limitations of the existing research on dementia care interventions for patients and caregivers and how can we overcome those limitations?

Larson: I think you know it's a good question. You know, we should always be aware of it. The problem is the heterogeneity of the disease and the heterogeneity of the situations where people are receiving care. To try to standardize high quality evidence in that much heterogeneity is really hard because too often you dumb down what you're trying to do in order to produce high quality evidence. When you have that much kind of noise in the system, which is heterogeneity, it just makes it difficult. You know, some of the papers that I thought I had worked on with colleagues in my career would have been perfect for this. They didn't meet that standard of the EPC. I think the challenge is really that we may need to rethink what constitutes convincing evidence in this field, but it doesn't mean we should stop trying to get the best, highest quality evidence of all.

Chin: Yeah I really appreciate you saying that because it does tell me that not only is the disease complex but so are our patients' circumstances, but perhaps even the care environment is different based on where you live and the state you live in and the region and the healthcare organization that you're in.

Larson: And the stage of the disease. What kind of care do you need if you're just having some mild cognitive impairment and maybe no dysfunction? Maybe none, maybe some. Who knows?

Chin: So in your title, I thought it was interesting that you said care partner and caregiver. You made an effort to use both. So what is the difference between care partner and caregiver as you note in the report?

Larson: Well, that difference – we didn't start out with that difference. We started out with caregivers. We heard from the field – and this was largely the advocacy groups and people that were providing care – that we're not just caregivers. We – you don't just give care, but we partner in the relationship we have with our – it's usually a family member – but the idea of a partnership seemed a lot less one way, if you will, because there's a dialectic going on. In fact, as you read the report and read some of the stories, we have to listen to our patients or our spouses or our parents who have dementia. We can learn so much if we partner with them as opposed to just give them the care, you know, we think to be given.

Chin: Well knowing that, I'm really – I really like your title. Initially I thought it was a bit wordy, but I think that makes a lot of sense. I think a lot of family members and care partners out there would appreciate that, that this is a two-way relationship, if not more with multiple family members.

Larson: Yeah, well it goes back to that principle of personhood and respect.

Chin: Many available interventions for patients and caregivers focus on the individual. What are some community or policy or societal interventions that really should be explored?

Larson: You know, I think the idea of trying to create dementia-friendly communities for example. In the Netherlands, of course, they built villages that are safe. Peter Whitehouse and his wife have developed these programs where you have persons with dementia being placed with young people in schools that learn and share joy together. I think that, at the community level, we've not been as creative as we could have been. Again part of the challenge is this whole evidence base. How do you prove something like this is really helpful? I don't think we've solved that at all, but to me there's a way forward in that space. I think we can look to other countries for guidance there as well.

Chin: Now I want to go back to what you had mentioned earlier about those two programs. So based on the systematic review, the committee found that those two programs had the most evidence of benefit and those were only supported really by low-strength evidence but still evidence. So the collaborative care model, for our audience, that really means integrating medical and psychosocial care. It's usually a multidisciplinary team and not just one provider. Then REACH, which stands for Resources for Enhancing Alzheimer's Caregiving Health, and that was an intervention aimed at supporting family caregivers. With that in mind, knowing that those are the two that we have, does that mean that we stop programs with low strength of benefits, and if not how do we continue to evaluate these programs and expand on them?

Larson: Well I'm one of those people that believes that searching for higher quality is a journey. You never quite get there, but it's a learning process and so you take these two programs as sort of some principles to work from and you continue to refine them based on different sites, different maybe ethnic racial groups, different socioeconomic situations, and so forth. If you are providing care and using the model, you have to be iterative about, you know, we're going to do this and hopefully it helps a person's well-being, or if it doesn't and our staff also can't handle it we may make adjustments. It's a virtual cycle, we call it, in quality improvement of plan, do, check, act from a program that you're mounting.

Chin: Well, if people are evolving and changing, so should the programs that help them right?

Larson: Right, right.

Chin: Well I do want to insert a couple of new updated questions with you because some recent things have happened that have affected the Alzheimer's disease field. And so now that the FDA has approved the first ever disease-modifying medication for Alzheimer's disease – aducanumab. Do you worry that more attention and resources will be pulled away from the care work and care partner, caregiving that's needed in research and clinical care towards this medication that slows disease?

Larson: Yes I do. I do. I remember when the cholinesterase inhibitors came on the market. I was still very involved in caregiving myself as a son, as a doctor, as a person who led a major medical center. We did see this notion of, ‘well we can make a diagnosis and all we have to do as providers is write the prescription and check with me in a year and see how you're doing’. That's not going to work and it's clearly not going to work with this new drug, which has not the most attractive safety profile of drugs. We don't know if it works. It's only been released with a proviso that it needs to be evaluated to see if it works in the field. So, I worry about that because there is a tendency to not want to confront the challenge of caring for a person living with dementia or supporting the care partner. I do think that, in the report, there’s clearly a call to say we've got to consider this part of our obligation as caregivers, and in my case I'm a physician or a son or a or a husband, but also as a society. Many people have said you can judge the quality of a society by how they take care of the people who are impaired and clearly this is an impairment. I think if we think about how can we take the impairment and the disability and allow that person to function in the level that it promotes their wellbeing and I'm not sure that these drugs are necessarily going to do something about wellbeing just because they remove amyloid.

Chin: I appreciate your insight on that, and you know talking to someone who was around when those medications first came out – those acetylcholinesterase inhibitors – is important. Many people have made a similar comparison of, well we thought that was a big deal then too but there's still more work to be done. We still have to provide great care to people living with this disease. 

Larson: Yeah.

Chin: In the beginning of the interview, I asked you what you'd say to a future doctor in considering geriatrics for instance. Now to end, I'd like to know what you'd say to someone about to become an Alzheimer's disease caregiver or care partner?

Larson: That is a really, really good question. I think I'd probably say, remember you're on a journey and the way you navigate this journey can have tremendous variation and will – it's hard to predict what's going to happen next, but if you can learn from the person you're providing care for, what their needs are, and what makes for improving their well-being and start from that place and then learn the skills that, for example, are available in a program like REACH, you will find it very personally meaningful. On the other hand, it can be exhausting. One of the things that you need to do is not just take care of that person you're providing care for but take care of yourself. In both instances, promoting something as vague, if you will, as happiness or well-being probably is a decent goal. Then as you move further into the stages of the disease, you cannot avoid the need for planning and planning, if at all possible, in a way that respects that person you're planning with, their values, and their wishes.

Chin: Well, that was a wonderful conclusion. Thank you, Dr. Larson. Thank you for your time today and for your review of this important document that's come out. I appreciate having you on Dementia Matters.

Larson: Thank you! It was my pleasure.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.