How Society Can Improve Care for People with Alzheimer’s Disease and Related Dementias

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SHOW NOTES

Dr. Karlawish's new book is The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. Learn more at his website.

Dr. Karlawish is co-director of the Penn Memory Center.

This is part four in a four-part series. Listen to Part 1, "The Past, Present and Future of Alzheimer's Disease Research." Listen to Part 2, "How Culture, Society and Politics Shaped Alzheimer's Disease Research." Listen to Part 3, "The Healthcare System's Role in Alzheimer's Disease."

Transcript

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: Welcome back to Dementia Matters. This is our fourth and last episode with Dr. Jason Karlawish on the very important subject of The Problem of Alzheimer's Disease. His book with that very title is out and available on print and in audio format. Jason, you must be tired of my questioning and I'm hopeful you have the endurance for this last conversation, which I suspect is the one that feels your passion in this field. What can be done? What must be done? To start, I'm going to ask you a question you've asked in your book. How do you live a good life when you're slowly losing your ability to live life?

Dr. Jason Karlawish: Yeah, it's to recognize that autonomy actually is relational. It's interdependent. That I think is the case in life in general, but it's especially the case in the life of a person living with cognitive impairment, whether that's mild cognitive impairment or disabling cognitive impairment or, in a word, dementia. Once you see that interdependent nature of autonomy, that relational aspect of autonomy, you begin to ask yourself – well, how have we structured a society to allow that to foster, to allow that to flourish? I think actually there are some things that have happened over the last forty years that are actually good, that we should listen to. There's a lot more that we now need to do. I guess the last part of the book, I call it, “A Humanitarian Problem.” We have to see dementia – we have to see the problem of Alzheimer's as a humanitarian problem. What's a humanitarian problem? It's a problem that isn't just caused by and solved by sort of a package of things, like it's caused by a disease that we just need to treat. There's a host of things other than just the disease that are going on here that need to be addressed beyond the biomedical space.

Chin: Now the setting in which we live matters, and so you describe two important places – home and work – in your book. You actually have very interesting stories for each of those. How do they fit into a life after a diagnosis of mild cognitive impairment or dementia?

Karlawish: Well, you know, let's start with work. Particularly as we start to diagnose these diseases early and early and early – when the very barest symptoms are present or few at all – it's presumptuous to think that therefore a diagnosis of Alzheimer's disease means you can't work. You can't continue your work. The question is how do you continue your work in a way that allows you to work well? First, we have to recognize the stigma that's going to surround our colleagues knowing, for example, that you're on aducanumab or donanemab because right away you've signaled that you've got Alzheimer's disease so every mistake you make at work, every slip of the tongue, et cetera, becomes overexaggerated, et cetera. And yet we have to recognize the other side of it, which is you may get worse. You may have more decline and at some point work may not work anymore. We have to think about ways that the workplace employment protections recognize these progressive cognitive disabilities. I chronicle in the book how, in some sense, some jobs already allow people to be monitored in ways that are somewhat awkward. I recount a patient who's ratings on RateMyProfessor show that clearly he's having problems because he's repeating himself in class and whatnot. There's a host of jobs that involve your interactions with technologies. I'll leave you with one that I find. I think cognitive testing of physicians who are over 75 is rather amusing. Why don't we just look at how they're using Epic and the degree to which their Epic behaviors and changes in their Epic behaviors show that they're having problems? I think that's a far more real-world way to capture whether there are problems there. That's the workplace. Then for home, I think there's tremendous opportunities for technology here, for monitoring and detecting impairment, et cetera.

Chin: People can develop many different types of symptoms as they progress in dementia. However, there are two that families often struggle with how to address specifically. Can you share your recommendations or your thoughts on home-looseness and Time Slips?

Karlawish: One of the revelations I made when I was writing the book was this idea of home-looseness. It's a neologism on my part, I'll admit. It's this sort of liminal space between feeling at home and being homeless, if you will. I think in the lives of persons living with dementia, many of them experience home-looseness. Namely, home just isn't working anymore despite the best of efforts by loving, caring family. I think the classic example of home-looseness is when a person living with dementia turns to their relative and says, ‘I want to go home. I got to go home.’ And you say, ‘Well we are home. This is the home we've been in for 50 years.’ Or ‘Who are you,’ or ‘When is mom coming home’ – mom who's been dead for 50 years. I do think that we need to recognize that sometimes home just isn't going to work for a person living with dementia and a new home is needed. I sort of ask for us to reconsider the value of the asylum, in the true sense of the word of asylum meaning a place of refuge and sanctuary and nurturing. Then that says well then let's look at what those other options are to address home-looseness. I think this is where the residential long-term care industry is struggling. I chronicle in the book these efforts to create these communities that are sort of modeled after past communities. The intention by the folks that are creating these places in San Diego that looks like San Diego circa 1950 – the intentions are nothing but good. There's no question that the residents, the folks who attend these places and live in them enjoy them, but what bothers me about them is they're grand acts of deception. I mean, they're architectural and aesthetic deception. There's another issue, too, which is in time you're going to have to update them because at some point 1950s San Diego is going to seem a little out of date for the crowd. How do you decide that? I actually asked one of the creators of a place like that and he just kind of scratched his head and said, ‘Yeah, it's a good point, I suppose.’ What I think is needed is a better sense of aesthetics. I think that we have to respect that some people like contemporary, some people like classical, some people like modern, some people like colonial. I'd want to see residences set up to respect those differences in taste as opposed to creating some sort of bizarre, nostalgic fantasy land like, let's go back to Eastern Connecticut circa 1970 with like storefronts that look like it's 1970. I find that very odd. To address home-looseness, I think we have to think very carefully about what the choices we simply have to make around the homes that persons living with dementia are going to live in. The last part of the book, “A Humanitarian Problem,” has two chapters, which are very much kind of a conversation with each other – “The Worlds We Create” and, in the last chapter, “The Worlds We End”. In “The Worlds We Create”, I take on the decisions we simply have to make around the kinds of environments we create for persons with dementia. There's no default position here. I had a fantastic interview and read the work of Anne Basting, whose book Creative Care is, I think, it's just a standard textbook that all dementia practitioners should use. In Creative Care, Anne Basting sort of posits a third way forward. The third way in some sense is well, when you're dealing with individuals who are so home-loose that you're struggling with whether to deceive them or tell them the truth. Deceive them, ‘Oh mom is coming back from the store tomorrow or later today,’ when mom's been dead for 20 years; or “Mom's been dead for 20 years.” Her way is to approach care thinking that the person living with dementia is still capable of creativity. Namely, for example, “If mom were here, what would we do with her?” Or, “Tell me something about mom that you really like.” In other words, to harness the creative aspects, the creative skills, that still remain in a person with dementia. I talk about how at a nursing home in Tennessee, she works with the staff there and the residents together to create a play about Wendy of Wendy's Neverland. It's really quite impressive. It's not just a, ‘Oh let's put on a show to do something this afternoon.’ It's months of work to write the script and create the setting and create the decorations with everyone participating as they can, including the families. It's really quite impressive, in part or mostly I think really, that she shows how persons living with dementia are still capable of creative engagement. We just have to foster it.

Chin: I'd like to move into the topic of wealthcare but before we do, you spent some time just now talking about improvement to our care facilities. Do you have any other suggestions, because I will say, as a geriatrician in a clinic, there's a lot of fear in making that needed transition to a care facility. There's just a lot of hesitancy because of the history of care facilities. Do you have any thoughts on what can be done now to improve that environment?

Karlawish: Yeah. I mean, I think that the approach that Anne laid out with Time Slips is an approach for training staff and, frankly, the families for how can we live well in this setting. I also think we have to walk away from the model of nursing homes as extensions of the hospital. You know, I think that the creation of skilled nursing beds and things in nursing homes frankly are – they're there for the money because they certainly bring in revenue, but I think the COVID pandemic revealed just how poorly staffed and really under-resourced they are to provide the kind of hospital care that they've been providing. Let's revisit and revamp and recreate these places truly as asylums and homes as opposed to sort of little mini hospitals.

Chin: Well then speaking about money then, can you talk to us about wealthcare, what that is and how that fits in this discussion?

Karlawish: Yeah, wealthcare. It's a clever plan of words. I'll admit I coined it. W-E-A-L-T-H-C-A-R-E; wealthcare. It makes – it's a public health perspective on two intersecting problems, namely cognitive impairments early on cause people to have troubles managing their finances and cognitive impairments cause people to need their finances for long-term care. Cognitive impairments cause people to become victims of fraud and abuse, typically meaning money is stolen, diverted, taken. You have the sort of nexus of the banking and financial services industry, the healthcare industry, and frankly law enforcement industry. That to me describes a public health problem. The idea of wealthcare is to say, look, people want to preserve their health and they want to preserve their wealth. If you want to detect problems with health, one way to do that is to look at their wealth. Are they double-paying bills, mis-paying bills, making repeated phone calls to your call center with the same problem, transferring assets in ways that they've never transferred before? I had the joy of writing a fascinating editorial about a fascinating paper called, “The Financial Presentation of Alzheimer's Disease.” Essentially what Lauren Hersch Nicholas and her colleagues showed was that, years prior to an incident diagnosis in the medical record of Alzheimer's disease and related disorders, you can pick up changes in people's credit scores and related other signs of financial behaviors. Well, I mean the financial services industry is essentially on the front lines of detecting cognitive impairment. It's time that they step up and work with our industry to think about a more rational way to identify seniors who are at risk and provide support and protect their assets. I think some firms clearly recognize this and are beginning to make steps in this direction. I think, though, it requires also recognition in the legal and in the regulatory sphere about this. Slowly you're seeing some changes that, I think, point in the right direction.

Chin: When you speak to providing support and care, you're not just speaking to the person with the cognitive impairment but also the caregivers who are often family members. So many have said it's not just the patient who receives the diagnosis. Similarly it's not just the patient who needs support. Why haven't caregivers been given greater support in our current system and how can we change that?

Karlawish: Well, the core thing that we're missing is a system of long-term care services and support for caregivers. We don't have a national long-term care social insurance program that would provide long-term care services and support for disabled older adults. In other words, for their caregivers. My colleague in the School of Law here at Penn, Allison Hoffman, has this – coined this idea of “next-friend” risk. What it is is that we are all at risk of becoming caregivers. We often think of becoming at risk of being disabled but there's this other risk: the risk of being a caregiver. It's a good argument to add to the arguments for a system of long-term care services and support. Alone among most developed nations, this country does not have a social insurance program. Germany, for example, has had one since the 90s; it's paid out of a payroll tax. It provides a sort of core infrastructure base of support. It's self-funding. It has required some legislative jiggles along the way but it's worked and it continues to work in that democracy. There's no reason why we don't have that here except we just lack the political will to make it happen.

Chin: In your book, you talk about caregivers' role with time, tasks, and truth. I really like that alliteration. What do you mean by this and what are the moral challenges in caring for people with Alzheimer's?

Karlawish: Yeah, and that is the heart of the matter; that caregiving is a moral challenge. I mean, when we typically think of caregiving we sort of run to helping with the basic activities of daily living – bathing, dressing, grooming, feeding, toileting. There's no question that that's part of caregiving in the lives of persons with dementia, particularly in the later stages of the disease, but early on it's about helping with instrumental activities of daily living. That gets to things that are more about self-determination, identity, and frankly decisions. Decisions about, what are we going to eat tonight and what will you wear? Will we grow your beard out or will we shave your beard, et cetera? It gets even more interesting when you start to think about how those decisions require how to met out, put out, describe the truth. It can take very quotidian forms but the morals behind it or the ethic behind it are intense. I mean, I have family members who tell me, ‘I don't tell my wife about upcoming doctor's appointments until the day of the appointment.’ Why? Because if I talk about it three days earlier, for the next three days it's, ‘When am I going to go see Dr. Karlawish?’ and I can't deal with the repetitious questions so I'm going to control the truth and I'm going to allocate when we talk about those appointments now. The example is quotidian. Yet behind that is a very morally intense activity, which is I'm going to met out the truth, hand it out, as I see fit. I think that aspect of caregiving is really the heart of what caregiving is about and it's the one I think is least recognized. Once it's recognized, I think it changes your whole perspective on taking caregiving seriously. Then you have to ask, well, how well do we really support these folks in these roles? How well does the healthcare system respect their roles? The COVID pandemic, I think, revealed this in vast and tragic dimensions when we kept caregivers out of long-term care residences and out of the hospital for good reason early on in the pandemic, but we saw the dramatic harms that occurred to individuals in hospital and in long-term care settings when those essential caregivers – namely, these family members – were kept away.

Chin: What are some of the steps that we can take now to improve the wellbeing and the dignity of people living with cognitive impairment and those family members, those caregivers?

Karlawish: Yeah. One that I kind of close the book with is we need to really have a conversation about the language we use, the words we use, and confront how it cultivates stigma. I talk about in the book an ad by the pharmaceutical company, Biogen, to promote their amyloid cascade hypothesis work. They have this drug, aducanumab, which, as you know, very well might even get FDA approval. In an effort to raise awareness of the amyloid cascade hypothesis, they have these ads that depict these stone-faced individuals staring you head-on and they say things like, you know, ‘He may just be starting to forget where he put his keys, but amyloid data has been accumulating for years.’ The imagery that they show is essentially the imagery of what looks like a Phantom of the Opera-type face. Namely, half the face is covered with this sort of white, chalky-looking, what we're supposed to think, I guess, is amyloid coating his brain but the effect makes him look like, like I say, the Phantom of the Opera. I just think that that kind of imagery evokes the horror story, gothic horror story, imagery, part and parcel with words like ‘vegetable,’ ‘out of it,’ ‘death before death,’ et cetera. I just don't think that that's very helpful language to help people live with and come to terms with. I think it's one of the reasons why we sort of have this culture of death that surrounds Alzheimer's. Namely, if I get the disease, shoot me, or if I can't feed myself, don't feed me. I think let's walk back from what has led us up to positions like that before we sort of embrace that kind of thinking about an approach to the disease.

Chin: And you just used the word and you write about it – stigma. The stigma haunts the lives of Alzheimer's patients and their caregivers. Can you explain to our audience what you mean by stigma, what these stigmas are, like you just mentioned for that one example in Alzheimer's, and then what effect it has on people with the disease and their family members?

Karlawish: Yeah, well stigma generally refers to a mark, a label that's put on someone that causes them to be treated differently and in ways that demean or otherwise strip their dignity. In Alzheimer's disease, we see public stigma. Namely, the things people say about people with dementia lead them to want to avoid them or stay away from them. Early in the book, I quote Walter Annenberg, Ronald Reagan's former ambassador to the United Kingdom, saying, "I prefer to remember him as a vigorous fellow than what he is now and so I stay away from him," which means, of course, he stays away from Nancy Reagan which is spillover stigma. Namely, the stigma that applies, that is labeled and put upon the persons living with dementia, spills over to their family members to their caregivers. I think you see this in your own practice. Patients and family members say, our friends are all gone. They don't see us. They stay away from us. Self-stigma then, of course, is the experience of an individual of stigma. Namely now that I have this label, I feel less of myself. I feel like I'm not capable of doing things. I'm reluctant to tell other people because I'm afraid they're going to treat me differently. Self-stigma, public stigma, spillover stigma; those are the three kinds of stigmas that haunt this disease. And boy, do they haunt this disease. I'm cautiously optimistic that we can begin to sort of have a turning in our culture to recognize how there are aspects of our language, for example, that we can change. I'll give you one example. It's personal. I used to say freely and openly, "Oh he's demented. Yep, he's got, you know,... that demented person, that demented patient." You know, I don't talk that way now. It's ‘a person living with dementia.’ I make great efforts to make sure in my writing and in my speaking, I talk about persons living with dementia to sort of try and separate that that disease is not them, that they are a person who is living with dementia.

Chin: And so knowing about these stigmas and that they exist and that they have this profound impact on people, what worries you about stigma and then the future of Alzheimer's disease research and Alzheimer's disease care?

Karlawish: What worries me about stigma is that it will lead to a culture that says dementia is like a living death and once people are demented, we should think of it as that's the end stage of the disease. I'm hesitating my language because we have had a few suicides in our practice and I chronicle one of a person who had MCI who asked for technology. It was technology she was using that was detecting more decline. She went ahead and committed suicide, a very planned, deliberate act. That's rare, but I think that the sentiment that allowed her to arrive at that is not just her own self-determination. It's the culture in which her life is unfolding. I talk about Margot Bentley, a woman in British Columbia, who wrote in an advance directive that essentially said, ‘If I can't feed myself, don't feed me.’ And yet when the daughters went to implement her advance directive, the nursing home wouldn't implement it because she still wanted to eat and when they offered her food she ate it. There's nothing about Margot Bentley's life that's glamorous. I mean, it's an awful disease. There's nothing about dementia that's glamorous by its nature. I mean, we're dealing with disease states. I think to approach them by saying, well, let's view mild stage dementia as terminal illness… I'm very uncomfortable with that kind of conversation. I close the book with talking about episodes of paradoxical lucidity. That is to say, periods of intense communicative and emotional engagement between a person with advanced dementia and their family member indicating that there is some presence of mind still there going on, albeit fleeting. I think we need to listen to those kinds of episodes, those kinds of events, which are very common before we sort of make these rash judgments that persons living with advanced dementia are mindless vegetables out of it or another kind of hot button rhetoric.

Chin: And so this is a two-part question now with a new presidential administration, the president with us. What should be at the top of Biden's administrative priority list when it comes to preparing for Alzheimer's? And then the second part, what should be our priority list just as people invested in the health of each other?

Karlawish: Well, the Biden administration should make sure that the National Alzheimer's Project Act is on their legislative agenda to be renewed. It expires in 2025. Obviously that's just on the other side of his second term, should he get that, but we should begin to prepare congress with the idea of renewing that. More immediate though, we need to take caregiving seriously in this country. His platform does call for a $5,000 tax credit. I think that's a start to open up a conversation but I don't think we need tax credits. I'll make a bold statement. I would urge him to start a conversation with America about caregiving and the need to support America's caregivers. Let's make the 2022 elections a referendum on that topic because, quite frankly, I don't see the other side of the aisle keen to create the kind of tax changes that are needed to make that happen. Let's have the American people vote on this. I mean, the argument that's typically put out for not creating a long-term care, social insurance program is that it's socialism. That's pretty much the platform that I hear counter arguing for that side. That's socialism and, of course, implicit in that is a taking of money, a surrender of liberty to the state, right? Well, you know, long-term care social insurance is not going to take away our liberty. Dementia is what is taking away our liberty, both as an individual and also as a caregiver having to care for them in a system that's not supporting them. That is what we have to face, which is that's what's taking away our liberty. I do think – and I think we need to end the waitlist for Medicaid access to long-term care services and supports. States, still now because it's a demonstration project, can say we only have so much to hand out each year and so you'll just have to wait a few months, if not a year or so, for long-term care services and supports. That just has to end. The days of the demonstration project need to end. We need to increase the amount of money, frankly, that flows to the long-term care workforce so that they are sustained in their positions and they can remain in those jobs, as opposed to kind of going from job-to-job which is the reality. The turnover in CNAs is enormous. That'll improve the quality of care. It'll lessen trips to the emergency room. It'll lessen the sort of adverse events that happen right now courtesy of the marginal care some patients receive in facilities. You know, that's my sort of legislative roadmap for President Biden. Again I would hope the midterms become America's conversation about long-term care social insurance.

Chin: And so then I guess I'd like to end by asking you, a few times in this interview you said you're cautiously optimistic. Why, given your meticulous account of our history and our failings, why are you still cautiously optimistic about the future?

Karlawish: Believe it or not, it's because of a disease, which is totally different than a slowly progressive disease of protein misfolding in the cortex. Namely, it's because of a single strand RNA virus called COVID. I am cautiously optimistic that COVID taught us how diseases reverberate not just in the individual who gets them, but in the people who are around them and how big, vast diseases reverberate through society. I think COVID showed us how important it is to have an infrastructure of care like schools and in transportation to get to schools, gyms, communities you can go out and walk in. COVID was a big wake up in how solidarity is so valuable to live as humans and to thrive. We will get through this pandemic. I mean, we've got three effective vaccines. The science there is elegant. It's beautiful and it's amazingly efficient and productive. My hope is that out of COVID we've recognized how interconnected and interdependent we are and how fragile is that system we have and how we need to support it. That's why I'm cautiously optimistic. I will admit, that's highly ironic. I mean, a viral pandemic might finally teach us how to live with a slow burning pandemic of a chronic neurodegenerative disease.

Chin: Well on that slightly positive note, I'd say, I'd like to thank you, Jason, for your time and your perspective. You shared a great deal on Dementia Matters over these past four episodes and I believe our audience and I have a new appreciation for the past, present, and hopeful future of Alzheimer's disease.

Karlawish: Well thank you, Nate. It was a lot of fun and thank you all for listening. If you have a chance to drop me a note about the book out there, do. I’d love to hear what you think.

Outro: Please subscribe to Dementia Matters on Apple Podcasts, Spotify, Podbean, or wherever you get your podcasts. And 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 was produced by Rebecca Wasieleski and edited by Bashir Aden. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments email us at dementiamatters@medicine.wisc.edu. Thanks for listening.