Where are we with Alzheimers? Are we about to see a revolution in how we diagnose and treat it with Amyloid PET scans and the amyloid antibody aducanumab (which is currently on FDA’s desk for approval)? Or are we still in the same place where there is no meaningfully effective treatment? Or is it somewhere in between, given the data that we have on comprehensive dementia care?
We talk today with Jason Karlawish, a professor of medicine, medical ethics and health policy, and neurology at the University of Pennsylvania Perelman School of Medicine. In addition to being a geriatrician extraordinaire, he is the author of the new book “The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It.”
In addition to talking about PET scans and new drugs like aducanumab, we discuss with Jason about the history of Alzheimers, the history of how we care for and fund caregivers, and where we go from here.
So take a listen and check out Jason’s book!
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And, Alex, who is our guest today?
Alex: We are delighted to welcome to the GeriPal Podcast Jason Karlawish, who is a geriatrician and is Co-Director of the Penn Memory Center and a Professor of Medicine at the University of Pennsylvania, Perelman School of Medicine. Welcome to the GeriPal Podcast, Jason.
Jason: Thank you. Great to be here, Alex and Eric.
Eric: It’s great to have you. Alex and I just finished reading your book, The Problem of Alzheimer’s, and we’re really excited to talk to you about it. It is really a truly wonderful book. So very researched with stories that I’ve never heard about before, about the history of Alzheimer’s, the history of geriatrics. It is quite amazing. But before we get on that topic, we always start off with a song request. Do you have a song for Alex?
Jason: I do. Robert Johnson, Sweet Home Chicago.
Alex: And why this song?
Jason: Two reasons: one personal and the other ties to the book, believe it or not. Personal, I came of age in Chicago. It’s where I went to college and then I went to medical school and then came back for fellowship, and critical points in my personal and my academic intellectual development were in Chicago. So it’s really just my sweet home.
Jason: But also Robert Johnson, an interesting story, kind of forgotten, kind of disappeared from the scene, but then rediscovered. Kind of like Alzheimer’s disease, nearly forgotten, but then rediscovered. So I just thought it had a nice symmetry.
Alex: That’s great. Here’s a little bit. (singing)
Jason: All right.
Eric: That was awesome. I can’t believe Ken Kovinsky hasn’t yet made us do that song.
Alex: No, he did. We did that on our first podcast.
Alex: That was better than the first podcast, but I still am not good at the blues. That’s good. I hope. People, if you’re listening and you’re a future guest, please request the blues because I will get better over time, I promise.
Eric: Jason, again, thank you. First of all, where can people find this book?
Jason: So The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It is available in hardback, in Kindle/e-book, and in audio book, wherever fine hardback, Kindle/e-book, audio books are sold.
Jason: Bound, please, if you can, but also your local bookstore, Amazon, yada, yada, St. Martin’s Press, a division of Macmillan. If you get the audio book, you get to listen to me read the opening chapter and the closing chapter. In between is an actor.
Eric: Nice. I’ve got to start off by asking, because we had a fair amount of authors come on our show. We talked about their books. This was incredibly detailed. The amount of references and the stories and going into the history, we’re going to go through all of that. It must have been … This is your second book. How did you decide, “I’m going to write a book on the problem with Alzheimer’s”?
Jason: The idea had been gestating, germinating, pick your odd biological metaphor, for probably a decade, and I’m so glad I didn’t write it when I first thought of it, because I really had to arrive at this book the way it was done. A lot of attention in creating it was how much is this book about me as a doctor of Alzheimer’s care versus about the disease, and I finally think I arrived at that reconciliation.
Jason: It’s interesting, the working titles for the book originally was My Profession: Confessions of an Alzheimer’s Doctor, a wonderful play on profession and confession. That helped move it along. Then I’m like, “No, no, no.” Then it was called The House of Alzheimer’s to capture this construction of the disease, if you will, dare I say social construction, and that didn’t work, actually. That hung on for a while.
Jason: Then it was called The Disease of the Century. Then I was at a party during the pandemic, a small party, socially gathered. Very socially gathered. I told something about the book and they said, “Oh, it’s about COVID, the disease of the century.”
Eric: COVID screws up everything, man.
Jason: I know. But then this is the title, The Problem of … Anyway, so it was a journey to get to that … Those titles, I think, showed the journey of getting to the book as it is now. I agree, the observation with the prior book and this book are both heavy with using history as a means to tell a story. I dare would never call myself a historian, just like a historian doesn’t call themselves a neurosurgeon. But many neurosurgeons like to become historians, but that’s another story.
Eric: Then taking another step back, even before the book, why Alzheimer’s? Why is this such an important issue? I mean there are a lot of problems in geriatrics, caring for older adults, in medicine. Is there something that drew you to Alzheimer’s?
Jason: Yeah. I lay that out in the book. In part three, I bring things up to present time and put myself into it and a bit of the story how I moved from critical care to geriatrics, and then within geriatrics made Alzheimer’s the focus. Some of that’s personal, events around the destructive care that my grandfather received, and some of it’s academic, namely long-standing interest in issues of ethics and human values.
Jason: If you had to pick the one specialty, I would argue, that most brings those things together, it’s geriatrics. It’s certainly in the top, I think. Then if you had to pick the one disease within geriatric syndrome, it’s dementia.
Jason: And so, for me, it was, has been, and I think, for a while, at least it’s going to remain the focus that allows me to do what I like to do across all those areas.
Eric: Yeah. Alex, before we’re talking on the four sections, any other questions that you have?
Alex: I just want to say that I also agree this is a tremendous book. Really enjoyed reading it. So delighted to see familiar characters in it, including yourself, of course. But also Mike Weiner, who’s at the VA in San Francisco, where Eric and I practice, and Rita Redberg, who is a professor of cardiology at UCSF and played an integral role in steering this committee about should we be screening for Alzheimer’s with amyloid PET scans, and Steve Pearson, who was my residency director and is now head of ICER, Institute for Clinical Effectiveness Research, of which I’m a part and have a meeting on Thursday, as well as just learning all of this tremendous history about the formation of Alzheimer’s Association, policy changes. We’re going to get into some of this now.
Alex: But also very different from your prior book, Open Wound: The Tragic Obsession of Dr. William Beaumont, which I read and we reviewed on GeriPal previously … I think Dan Matlock wrote that review … which was much more of a historical, fictional account, whereas this is nonfiction.
Jason: This is definitely nonfiction.
Alex: This is much more similar to being mortal, with more history, but still including the personal stories which bring it home and make it very particular and specific for the readers. So kudos to you on writing this, and we should launch into it.
Jason: All right.
Eric: All right. We’re going to break it down by section. The first section, and correct me if I’m wrong on any of this, is really the changing meaning and definition of Alzheimer’s disease. Again, really encourage, if people want more in depth, really do read this book if you’re interested in Alzheimer’s disease or the history of dementia, history of geriatrics. It’s like it’s all in there.
Eric: But I’m going to start off with one quote, where you actually … You tell one of your patients’ wives that, “Mr. Harrison pushed back when I labeled his wife as mild stage. ‘Her anger was so disruptive, this had to be severe,’ he continued. The counter severity of the emotional behavioral problems are not factored into staging.”
Eric: I’m just going to stop there. It was really lovely written. It was the first time I thought, “Oh, yeah.” When I say mild disease, I’m thinking it from my medical lens, but there are so many other lenses including like from a personal perspective for this husband. “It’s not mild. It’s taking all of my resources.”
Jason: Exactly, yeah. So it must be severe, yeah. Yeah, I know. Part One: Alzheimer’s Unbound is all about the changing meanings, emphasis on meanings, plural. The particular quote that you pulled there was this husband who … I’m staging the disease by the way we’re supposed to, which is the severity of impairments and IADLs and then BADLs. We don’t put behavior into that because it waxes and wanes, as we know.
Jason: And yet for him, it was all about the severity of her anger, which made the disease, at least we would say, so I think subjectively, ethically, if you will, severe. That theme runs through that part, which is how do you see what is this disease and, therefore, what do you talk about when you talk about Alzheimer’s? Much of it, of course, Alzheimer’s Unbound, about how the professional community has had its changing meanings.
Jason: I started out with the view … I was trained in the dementia and then is it Alzheimer’s. I realized as I wrote the book that I occupied personally, this transformative period where we want from you must go through the door of dementia to enter the house of Alzheimer’s to now this unbound sense of what Alzheimer’s is where you don’t have to have any clinical problems, if you will, to be labeled with it.
Jason: And so, that’s what that part’s about. We truly, I mean you guys too, have lived through that revolution and redefinition and recasting of the disease and all the messiness that follows from that.
Eric: Well, let’s talk about that. So what does it take to get a label of Alzheimer’s disease now?
Jason: I think now it depends on where you go, and I don’t mean that flippantly. But if you think of the disease the way that the field is transformed, and I talk about that in the Republic of Alzheimer’s Disease, the chapter about this coalescing of the biomarker revolution into a recasting of the disease as a biomarker, biological diagnosis akin to cancer, et cetera. There’s a lot of logic to that for many reasons that are commendable.
Jason: But what that does is it unlimbers the disease from many clinical correlation, any clinical reality. If you had to pick one disease that was so hard bound to clinical care, it was Alzheimer’s. You had to have dementia.
Jason: Of course, there’s that interregnum period of mild cognitive impairment where you don’t have dementia, but you’re not normal anymore. You’re in the middle. That’s one other way to define what Alzheimer’s is. That is to say the clinical state of MCI or dementia caused by Alzheimer’s. Or maybe never mind that, that’s just the syndromic staging and it’s all about the biology.
Jason: My point is that I wanted to put the origins of all those streams of thought out there. How did we get to them and what have been the controversies that surround them now and going forward?
Eric: Yeah. One big controversy right now is when we think about … I’d love to talk about this thinking about Alzheimer’s disease before it gets clinical, but how and whether or not new imaging, like amyloid PET scans, are really changing the way we’re thinking about it or should think about it, or is it still very much in the it needs to be in certain centers is, it’s very much a research-
Jason: Alex mentioned Dr. Redberg, who’s at your institution. I think one of the high-low moments in the modern history of Alzheimer’s was the committee that she chaired, the MEDCAC committee, the Medicare Advisory Committee on Coverage or whatever it is. It’s this committee that’s charged with advising CMS, the Centers for Medicare & Medicaid Services about the evidence to support covering something.
Jason: And so, Eli Lilly brings the first commercially available amyloid radio tracer for their review, and hopefully their agreement, that the evidence is sufficient to support its use in clinical practice. I got the transcript to that hearing. It’s publicly available. You have to have the patience to read it.
Jason: And it was a disaster. That is to say from the perspective of Lilly. I mean it is a fascinating … Someone ought to make a play out of it, because you witness this coming together of the biomarker Alzheimer’s field with the wider field of medicine … And these were smart people, I mean Redberg and others. These were not off-the-street, I-don’t … I mean they knew the science, and they could not convince the one and the other … In particular the Alzheimer’s field, could not convince the wider smart field of medicine that this is a test you should use in clinical practice.
Jason: It’s this interesting moment where … I don’t want to say two cultures, but two ways of thinking about the disease cannot come together. It ends with the committee voting that the evidence is not sufficient to support its use in clinical practice.
Jason: What’s interesting, of course, is that that was a day in January where it was preternaturally warm in Baltimore and there was a thunderstorm at the end of the day, which there used to be an expression “thunder in the winter” or something. It’s impossible until global warming, of course. Just to me, that just captured how unusual that day … The sort of oddities of that day.
Jason: But, simply, it shows how difficult it has been and remains to translate this biomarker-based definition into wide clinical practice, and that hearing laid it all out.
Eric: Yeah, I can imagine the challenges. A, you’d have to show it actually significantly changes management or what happens. B, it also links the biomarker, let’s say amyloid, to the disease. Later on, I think in section three, you also talk about, maybe it was before, the heterogeneity. There is a lot of differences. How sure are we … Like everything that we’re seeing is related to this biomarker, which is amyloid. How do you put the-
Jason: Well, the funny thing about that hearing was that they went in with the argument that for people with mild cognitive impairment, this test is really good. They were right and they were wrong. They were right because if you come to my Penn Memory Center and I spend the effort and time to figure out that you truly have mild cognitive impairment, and I walk you through imaging, I can see the value of an amyloid scan in your case to figure you out.
Jason: But that’s at a Penn Memory Center where we have the ability to do that kind of work up. MCI is this fragile little bird in the spring, that out in the wide world, it just can’t survive, namely you put MCI out in the … And this is what I think Redberg and rest were on to, which is they’re not going to figure out MCI …
Eric: Yeah. You have your 50-year-old who’s going to come to your clinic. You’re just going to order your PET amyloid for everybody.
Eric: Oh, PET amyloid’s positive. Oh, my goodness.
Jason: That’s what they figured out and that’s what the field … And that still remains today that we have this idea of MCI which works well if you come to a place like Penn or the Mayo Clinic, where it was discovered. But in wide clinical practice remains this mysterious protean, “I guess you’ve got MCI if you’ve got a memory complaint,” or, “I don’t want to have to stay you have Alzheimer’s disease.”
Jason: And so, that’s one problem. Then, of course, the other problem is the more we understand the biology of the disease, the more complex we see it as, that is to say the discoveries of things like TDP-43, vascular disease, ubiquitin. This is not one disease. It’s many disease. It’s best thought as Alzheimer’s diseases. And that’s what the science has arrived at now.
Eric: Yeah. I love that analogy you also make with cancer. You can’t think of cancer as one disease. I also think it’s interesting when we think about it, because it links to … Medicine really loves defining people with pre-diseases, like prediabetes.
Eric: That great paper that just came out in JAMA Internal Medicine on prediabetes with editorial on that, basically showing that a lot of people with prediabetes … More people convert to normal than convert to diabetes-
Alex: Among older adults.
Eric: Among older adults. Sorry. Thank you, Alex. What’s the title of that editorial, Alex, again? I love that title.
Eric: Yeah. It was like Two Risk Factors Removed or something. I think a lot of the worry is when we’re doing around PET MRIs, what are we actually measuring here? I’d just love, Jason, for my own knowledge, like let’s say you have somebody in your memory clinic. So you’ve got the expertise now. Somebody comes in with an MCI, you do this PET scan. How many people will actually … Like not everybody with a positive PET will develop dementia over three years, most. Where are we with the knowledge around …
Jason: So in locally classified amnestic MCI, where you also see neurogeneration, meaning evidence of atrophy on MRI, and then add to that not just amyloid, but a tau marker, you’ve got pretty good prognostic ability that, over five years, they’re going to experience cognitive decline.
Jason: Having said that, though, and to get to the label of MCI, as I point out in the book, is tremendously challenging. The folks at the Mayo Clinic had the luxury of the Mayo medical record, the Mayo system to really figure that out, and wide clinical practice that’s so fungible.
Jason: But where the field will go is much like in cancer and cardiovascular disease. Where there is a drug, a treatment, it will help define the disease. So there will be some sort of druggable and, therefore, that’ll be a definition of the druggable form of Alzheimer’s.
Jason: You see that in the history of MS as well. As MS treatments were developed for multiple sclerosis, it carved out different kinds of MS that responded more or less differently to the various treatments that were developed since beta interferon in the early ’90s.
Jason: So I mean I think the future for this disease is more or less druggable targets based on various different biological measures. Where? I think the bottom line will be the bottom line, which is what’s the return on this expense in terms of delaying disability, et cetera?
Eric: Don’t we have a druggable target, Aricept, memantine, Namenda?
Jason: No, those drugs were developed to develop a research infrastructure. I had a lot of fun on the part of the book called The Birth of Alzheimer’s. It ends with hope in a pill. Hope in a pill is the story of the cholinesterase inhibitors.
Eric: I love that chapter, by the way.
Jason: Yeah. Ken Covinsky gets quoted in that.
Eric: It was so great just to learn the history of tacrine and all of these things as a geriatrician. I’ve never prescribed tacrine. I’ve heard about it, and it was great just to see like how it actually developed over time.
Jason: Yeah, the story on the cholinesterase inhibitors is one that I think ought not to be forgotten. I’m afraid it’s being a little bit repeated now with the story about aducanumab that’s under FDA review as we speak.
Jason: But essentially there was great hope, promise, and desire for something that worked. Unfortunately, there’s nothing like those kind of emotions in people who can’t admit their emotions to compel those people to do things. So the scientific community really went over the top on the benefits of the cholinesterase inhibitors, publishing in New England Journal in an editorial that said it was a triumph for the scientific method, et cetera.
Jason: Ultimately, the study that got tacrine going was found essentially to be fraudulent. They didn’t know that at the time they published the story, the research report, but the NEJM editors would subsequently admit that they had concerns about the design of the study.
Jason: The point I try to bring out in that section was you’ve got an awful disease, no treatments, a desire to show progress. That’s a dangerous brew to make bad decisions, especially if your culture is we can’t admit the emotional aspects that drive us. [crosstalk 00:22:48].
Eric: I feel like you linked later to … What’s the antibody called again? Ada-something.
Jason: Oh, aducanumab.
Eric: There you go. I could never remember those names. Basically, that story of that drug seem to perfectly mimic the story of what was happening-
Jason: There are strange parallels between current events and past events. No surprise.
Eric: Yeah. Maybe we can figure out, tease out some statistical significant differences if you … Maybe tease around the numbers a little bit. But what’s the clinical benefit of it? It seemed like that was a potential question that’s happening right now. Is that right?
Jason: It is. That is a very pithy summary. One of the things I talk about in the hope in a pill and that chapter is the difficulty that began in the cholinergic hypothesis era, and still persist today, of having a coherent, understandable language to talk about how have we successfully treated this disease. It’s very different than cancer or cardiovascular disease, where in the end, it’s are you alive or dead, because death in this disease is something that is not an end point we want to delay. We have a very weird relationship with death with this disease.
Alex: Yeah. Is there anything more that we want to talk about with imaging? Because I want to ask a little bit more about treatment, which we’ve moved into. Eric, did you want to mention the oculo-prescriptive reflex, or should we skip over that?
Eric: No, I’m going to skip over that. I’ve got some backlash over that.
Alex: Let’s skip that one.
Eric: I think the main thing is-
Alex: Listeners, you can figure out what that might mean [laughter]. You see something on amyloid and that leads to a prescription.
Eric: [covering ears] La la la la la la
Alex: Right, right. I wanted to ask about we have successful treatments. We have treatments that are effective, and they are nonpharmacological treatments. You go in detail in talking about these various treatments, some of which are supported with our health policy and some of which have not been, and some of which have been proposed and then just shutdown, and the history of how that’s happened, including famous characters like Ronald Reagan and Newt Gingrich and many others who appear in this story.
Alex: I mean I don’t have a specific question, but why do we have such trouble as a society investing in nonpharmacologic approaches to management of dementia, which have been shown to be effective in improving caregiver and patient outcomes.
Jason: Yeah. I was going to say one word, but I’ll resist it. There’s a whole part of the book I call The Birth of Alzheimer’s Disease, and it was the most fun to write and also the most emotional for me to write, perhaps the most emotional, even though it was about events that ended around 1996.
Jason: But it was essentially 1980 hits and the Alzheimer’s movement is born. It is ready to go. The organization that would come to be known as the Alzheimer’s Association was founded. NIA recently organized, makes Alzheimer’s its focus. Congress is starting to take notice. Everything is like, “We’re going to do this.”
Jason: By the end of that century, 20 years later, it’s like what has happened? What happened is the Reagan years and then the Gingrich years. What really became evident to me as I read the story was that the modern Alzheimer’s movement came smack up against a host of political, social, cultural events, none of which were designed or intended to thwart the care of persons with Alzheimer’s, because if there’s one disease that rallies both sides, it’s Alzheimer’s.
Jason: But you have only to look at the arc of events across the ’80s and ’90s to see just a relentless series of approaches at the federal and state level that just did not work in the best interest of patients or their family members. I mean Reagan walked in and made it very clear Medicare and Medicaid are full of waste and corruption and need to be cut, cut, cut, cut, devolve to the states as much as possible. By the time Gingrich took over, the notion of raising taxes was a policy no-go for the entire Republican Party. Nothing can be done that will raise taxes.
Jason: So the consensus that existed that we need to do something about long-term care social insurance, which existed up until the late 1980s, simply fell apart. It is stunning to read that in 1988, every candidate running for the Democratic and Republican nominations favored a long-term care social insurance program for the United States of America, except for one: George Herbert Walker Bush. He would go on to win the election, the rest is history.
Jason: But to read that and then look at now where you have one whole party that would just dismiss that outright as socialism and unnecessary taxation, we have arrived at a point in society, in this country in particular, that we’ve just lost the ability to have a coherent conversation about how to organize our country to take care of each other, recognizing we face vast and uncontrollable risks that you cannot personally manage, the risks of devastating chronic illness like Alzheimer’s disease.
Jason: I mean unless you happen to be Warren Buffett or whatnot, yeah, it’s not a problem. You’ve got plenty of money. But for the rest of us, the neither rich nor poor, the vast middle class, we don’t have the ability to pay our way and live with this disease, and yet that’s where we’re at as a nation.
Jason: So I’m obviously on a soapbox, I think, but I really finished that part, The Birth of Alzheimer’s, and said these patients and caregivers are the victim of just a relentless series of mostly political and social events. The one other social event that’s unique to this country is the family values movement, which made the role of women in America a contested role, namely that they are the caregiver and the woman’s place is in the home, or is it not in the home?
Jason: We couldn’t have, and we still have not been able to have, a coherent conversation about given the way the American family is now both parents work, the expenses of raising children are not trivial, you cannot then expect that the family will just take on the added role, and expense, of caring for a frail, chronically ill older adult.
Jason: And yet conversations about that get wrapped up in the family values movement that views that as disruptive to the structure and function and morals of the American family, and I find it absolutely boggling. And yet that’s where we are as a country. This is supposed to be a medical podcast, but much of this book is actually about politics.
Alex: About politics, yeah.
Jason: And this disease is caught in the crosshairs of bitter partisan political battles in this country. And that’s the reason-
Eric: Well, and it also sounds like-
Jason: Yeah, sorry.
Eric: It also sounds like there’s, oh, wait, we can blame it alone on politics, but there’s also looking internally at us. You’re talking about this care versus cure, kind of, with Alzheimer’s Association, the NIA, like focusing on … I think the quote was like we did not defeat polio by building more iron lungs. We developed the vaccine.
Eric: That was part of the thinking is that how we are going to manage Alzheimer’s is not by helping people who are caring for individuals with Alzheimer’s, it’s let’s get that drug that’s going to cure this disease.
Jason: Again, it’s such a complex Gordian Knot because I don’t think any oncologist would say care versus cure. Of course, I have to care for my patients. They have a lot of signs and symptoms that need palliation, et cetera, and also I’m going to strive for a cure. You could just go down the list of all the chronic common diseases, heart disease, et cetera.
Jason: And yet the odd thing is with this disease, for some odd reason, we created this pitting of care versus cure. If you focus too much on care, you won’t give all your energy to cure.
Jason: I think part of it was a desperate desire to create a biomedical model that would be druggable and there would be that kind of progress and therapeutics. If we focus on this as the social problem and the needs of the caregiver, it dilutes the focus on a biomedical problem.
Jason: I suspect that’s a lot of the motivation there, because remember the Alzheimer’s movement didn’t walk into a research infrastructure like cancer and heart disease walked into a clinical research infrastructure. I mean cardiologists and oncologists existed in some protean form for decades, centuries. There is no Alzheimer’s doctor even today.
Jason: And so, the field has always been struggling to get legitimacy in the biomedical space. And so, I think it leads to this weird care versus cure kind of bizarre juxtaposition that make actually no sense if you think about it.
Alex: Yeah. Looking forward, it’s pretty clear that there will be some effective drugs for some subtypes of Alzheimer’s. Disease.
Jason: It will be a druggable disease that will have some trajectory of decline control, absolutely. But we’re not going to cure our way out of this.
Alex: But we’re not going to cure our way out of this and there’s going to be a tremendous need for most people living with Alzheimer’s disease for care throughout the course. Maybe you slow the trajectory, but you’re not going to cure it, as you say.
Alex: So you talk in the book as well about how the Affordable Care Act has actually been, for many, a lifesaver. I wonder if you could say more about why that is.
Jason: Yeah. I was struck by two things in the ACA that almost maybe say it should be called the Alzheimer’s Care Act. Of course, irony is abound in Alzheimer’s. You say, well, wait a minute. Alzheimer’s is … Most of the patients are 65-plus. If it was a disease under 65, it’d be a rare disease, which is how it used to be thought of, of course. So why would the ACA have anything to do with helping to improve the quality of care of people living with Alzheimer’s disease? Because they have Medicare.
Jason: The answer is it has a lot to do with it because most of their caregivers are not older adults, they’re younger adults. Most of those younger adults, before the ACA, struggled to find health insurance. The irony of ironies in America was the health insurance was linked to a job, a job with Benny’s. Well, there’s one job that doesn’t carry with it good benefits. It’s being a caregiver.
Jason: And so, you’ve got these mostly women who are either out of the work force or in the partial work force with a job that doesn’t have good benefits, et cetera, who are struggling. Well, along comes the ACA and makes healthcare available for them. And we know the morbidities of Alzheimer’s disease. So I mean it wasn’t designed to be a healthcare benefit for caregivers in America, and yet it is the health benefit for the caregivers in America who are out of the work force.
Jason: The other thing that struck me with the ACA, and ACA, as you know, is this statute. That gets a tremendous document of stuff. It contained within it the Center for Medicare & Medicaid Innovation, CMMI. I will say that CMMI has patiently, methodically, and meticulously advanced a series of innovations for the improvement of Alzheimer’s care, including efforts to put care management into a benefit package for Medicare beneficiaries.
Jason: And so, quietly under the radar … And probably that’s the only way you can get things done in Washington, because once it’s on the radar, it becomes partisan … they’re slowly making progress with improving the delivery of care. The problem, of course, is the system with which it lands.
Jason: So coverage for people under 65 and the innovations that you see from CMMI are, I think, good examples of what should happen and is needed for Alzheimer’s patients as well as their caregivers.
Eric: I just want to go back to the book real quick for a quote, and maybe you can tell me a little bit what does work then. The quote is: “Amp, gent, and a feeding tube. Honey-thick liquids. All four bed rails up keeps a person from falling out of bed. Sedating Benadryl for sleep, wrist restraints for agitation. We did awful things, and we still do.”
Jason: We did awful, iniquitous things.
Eric: Iniquitous things. I saw that and I’m, “Well, I’m going to screw up that word.” [laughter]
Eric: I love the fact that you actually talk about somebody trying 12 hours of thickened liquids and couldn’t actually do it. #thickenedliquidchallenge.
Alex: Thickened liquid challenge.
Jason: That’s you guys. That was you guys.
Eric: What does work? What are the ones … When I just asked you that question, the first things that come to your head as far as improving care for patients and family members dealing with Alzheimer’s?
Jason: Yeah. So diagnosis, stage, education about the diagnosis and stage. Then support to develop a day that’s safe, social, and engaged. You don’t leave the diabetologist’s office with a script for an antidiabetic drug and like, “Okay, have fun. Figure it out on your own.” You get education about how to live with diabetes.
Jason: The same thing should be the case for persons with Alzheimer’s disease and related disorders. That’s been proven to improve quality of life and reduce depression on the part of the caregiver, for example.
Jason: Second, access to quality adult day activity programs, access to quality long-term care services and supports. Third, the hazards of hospitalization. I have a whole chapter on the development of programs to reduce delirium and to improve the delivery of surgical care, particularly hip fracture care.
Jason: I mean the evidence is so overwhelming that we can improve the quality … I mean I’m telling this to the choir of geriatricians, but it should just simply be mandatory at all hospitals to have hip fracture surgery programs, geriatric surgery programs, programs for the identification and reduction of delirium, because the spin off of that is so tremendous in terms of overall improving your quality of care.
Jason: Then I talked a bit about the need to improve how we communicate with patients. It’s time to stop thinking about capacity and such as the legal construct that only psychiatrists can do and et, cetera. But the logic and the language of capacity assessment should be part and parcel of the way we communicate with patients, where issues of competency aren’t even on the table, but it’s about being able to talk with someone and not assume just because of their diagnosis that I can’t talk with them.
Jason: Then, finally, there’s, I think, very promising and emerging data about the role of technology, I mean the ability to monitor how we function in the world. Right now we still rely on talking to a family member, an observer who hangs around and figures out how dad is doing as best as they can. The ability through the “internet of things” to monitor how our brains are functioning in the world should transform the way we both detect and monitor cognitive problems.
Eric: You also brought up the robotic pet seal as the caregiver.
Eric: What’s the pet seal called again?
Jason: Paro, which is Japanese for robot, I believe. That’s Paro the seal, yes.
Alex: We’ve talked about doing a podcast about the seal. We haven’t done it yet.
Jason: Yes, yes, robots. I don’t think robots can be our friends. I get the desire … And actually Japan is very enthusiastic about the role of robotic care for persons with dementia because, quite frankly, there aren’t enough humans to care for people. I get it. I mean, you know.
Jason: But I think the enthusiasm for robots to do some of the work of care, and let’s just say it like this, the work of care, there certainly is a role. But I have a thought experiment. What if Ronald Reagan was assigned a robot for his care instead of Nancy Reagan?
Jason: The ability to create robots that have the ability to read language and taking information and communicate is becoming rather spectacular. So you could imagine someday a robot that’s tuned into hearing Reagan ask a question and give him back an answer that draws upon Ronald Reagan’s past. Well, what should that robot say to Reagan? Should the robot lie? Should the robot tell the truth about who George Shultz is?
Jason: The point I try to get at in that chapter is trying to offload human moral agency and experience onto robots will only get us so far and miss some of the nuance and judgment that is distinctly human, namely we have both agency and experience.
Jason: Part of caregiving, it’s not just about the work, the doing of tasks, it’s about that judgment, nuance, where you’re essentially like a cognitive prosthesis for the person who’s impaired, filling in where their agency and moral experience don’t work so that they become fully human again. Robots can certainly help with some of that, but they are not the answer for humans taking care of humans for what is essentially a disease of humanity.
Alex: And yet you say you’re ambivalent about the robots because there are positive aspects as well.
Alex: Particularly when the alternative is a drug or a sedating drug.
Jason: No, no, no. In fact, Paro is pitched as one way to reduce agitation. The company claims data. We can debate the studies. But if you had to think of cuddling a somewhat weird, fuzzy thing that makes noises and has ambiguous genitals versus a sedating dose of Haldol to calm someone down, I’ll take the fuzzy seal, thank you very much, rather than the sedating Haldol.
Jason: And yet much of what agitation comes from is a failure of environment and interaction. Not all, and I certainly have patients, despite the best of efforts by loving caregivers, have problems. There you either use these drugs, pills, or whatever it may be.
Eric: I love the idea of the environment, too. We don’t have time for this, but you go through the history of these environments that are somewhat built to lie to individuals’ dementia, that [crosstalk 00:42:17].
Jason: Yeah. I have the whole chapter, The Worlds We Create, where I how long-term care social services and supports are designed, and I walk away very morally and ethically in a quandary at least, if not in a dilemma, about these environments that reproduce past eras, like living in Stamford, Connecticut in 1940.
Jason: I don’t have a problem with environments that cater to taste, modernist versus classical architecture, but I have a problem with grand acts of deception where like the person is put in a library with Eisenhowers on the wall-
Jason: … and the National Geographic stop at 1958. I’m like, well, now wait a minute. You’re lying to them.
Eric: Yeah. I can imagine, like when I have dementia, I’m in one of those places, I really don’t want Flock of Seagulls playing all day.
Jason: Well, that’s the thing. If you’re going to determine these environments, what do you determine? Is it Eisenhower or is it whatever? The other thing is when do you update them? I mean, at some point, Eisenhower, even for the old people, would be like, “Who the hell is that guy?”
Eric: Well, I want to really do thank you for joining us today.
Jason: You are welcome.
Eric: I really love this entire book. Alex, did you want to say something?
Alex: Oh, I just wanted to ask you one more question, which is one we could have done at the beginning, but I think it’s really important, and you’re so eloquent on this issue. Why is dementia different? You’ve talked about cancer, you’ve talked about heart disease. What is it about dementia that is different?
Jason: Because dementia is … Alzheimer’s disease is a disease of our autonomy. It’s a disease that gets right to the heart of being a moral agent, having moral experience and agency. It’s a disease of our identity. In that sense, it is unique amongst all the diseases.
Jason: It’s why it wasn’t fully recognized as a disease until the twentieth century, because up until the mid to late twentieth century, there were vast categories of humans that were not fully allowed to be humans: women, people of color, lesbian, gay. They were not yet allowed to fully self-determine their lives.
Jason: In that kind of culture, it’s hard to see Alzheimer’s, especially the early stages of the disease, as a disease, because if you don’t think autonomy is a universally held value, well, then why would a disease that takes away autonomy be a disease? It would just be like getting old or, I don’t know what, something else. That’s why it’s a distinct modern disease, I think.
Alex: Thank you.
Eric: Thank you.
Jason: Thank you.
Eric: We’re going to have links to the book on our GeriPal website. Really encourage all of our readers to read it, if you’re interested in Alzheimer’s, just the stories itself. For example, it does not just talk about Hospital Elder Life Program and the benefits of it, but it also tells you all about Sharon Inouye and her progressions. So really encourage everybody to read that. But before we leave, Alex, do you want give us a little bit more of … What’s the song title again?
Alex: Sweet Home Chicago.
Eric: Sweet Home Chicago. Ken’s going to love this.
Jason: Nice work, man.
Eric: That was awesome, Alex. Jason, very big thank you for joining us today again.
Jason: Thank you, Eric. Thank you, Alex.
Eric: A big thank you to all of our listeners for your continued support, and Archstone Foundation for your continued support for the GeriPal Podcast. Goodnight, everybody.