Unlocking Us with Brené Brown - Brené with Jason Karlawish, M.D. on The Problem of Alzheimer’s

Episode Date: April 21, 2021

I have a tough, loving conversation about dementia and Alzheimer’s with Jason Karlawish, physician, researcher, professor, clinician, and author of The Problem of Alzheimer’s: How Science, Culture..., and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. This heartbreakingly common diagnosis creates multiple patients — both the diagnosed and the caregivers. We talk about the difference between Alzheimer’s and dementia, how we respond to a disease that diminishes our autonomy, and what we can do to take care of ourselves and each other. Learn more about your ad choices. Visit podcastchoices.com/adchoices

Transcript
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Starting point is 00:00:00 Hi, everyone. I'm Brene Brown, and this is Unlocking Us. This is an important, enlightening, tough, loving conversation about dementia and Alzheimer's. And I know many of us have been caregivers and are caregivers. And I know a lot of us are also living some anxiety about it happening to us. And so this week, I'm talking to this incredibly wonderful Alzheimer's disease researcher clinician, Dr. Jason Karlawish. He's the author of The Problem of Alzheimer's, How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. Again, it's one of those conversations y'all know me by now, it's going to get very personal very quickly. And it's personal for Jason as well. But he's also this incredible leading expert. And he really just breaks it down for us and teaches us so much. And
Starting point is 00:01:02 I do think in this case that knowledge is power, especially when it's knowledge that not only comes from biological and medical understanding, but this is a heart-centered guy that talks about the reality of this disease and the caregivers. Support for this show comes from Macy's. Fall is in full swing, and it's the perfect time to refresh your home and wardrobe for the sweater weather with new finds from Macy's. From October 9th to October 16th, get amazing deals on shoes and boots on sale at 30 to 40% off. And you can shop new styles during the Macy's Fab Fall Sale from October 9th to October 14th. Shop oversized knits, warm jackets, and trendy charm necklaces, and get 25 to 60% off on top brands when you do.
Starting point is 00:01:49 Plus, get great deals on cozy home accessories from October 18th to October 27th. Shop in-store or online at Macy's.com. About a year ago, two twin brothers in Wisconsin discovered, kind of by accident, that mini golf might be the perfect spectator sport for the TikTok era. Meanwhile, a YouTuber in Brooklyn found himself less interested in tech YouTube and more interested in making coffee. This month on The Verge Cast, we're telling stories about these people who tried to find new ways to make content, new ways to build businesses around that content, and new ways to make content about those businesses. Our series is called How to Make It in the Future, and it's all this month on The Vergecast,
Starting point is 00:02:33 wherever you get podcasts. Before we jump in, let me tell you a little bit about Jason Karlawish. Dr. Karlawish is a physician and a writer. He researches and writes about issues at the intersections of bioethics, aging, and the neurosciences. He's the author of the novel Open Wound, The Tragic Obsession of Dr. William Beaumont, which is actually a fiction book, which I'm going to read soon. I can't wait. His essays have appeared in the New York Times, the Washington Post, Forbes, the Philadelphia
Starting point is 00:03:02 Inquirer. He is a professor of medicine, medical ethics, and health policy and neurology at the University of Pennsylvania and co-director of the Penn Memory Center, where he cares for patients. He lives in Philadelphia. And you'll meet maybe, I don't know, an hour in, you'll meet his dog, which is really fun. I love people. And I love when someone like Dr. Karlawish can bring humanity to a topic that feels like it strips the humanity from people and just crushes caregivers. Thanks for being here. Thank you for being with us on the podcast today. I really appreciate it, Jason.
Starting point is 00:03:45 It's a pleasure to be here, Bre. I will have to say to everyone, I went through this Dr. Karlawish or Jason thing. And of course, he said, whatever you're comfortable with. And I want to share with y'all why I'm choosing Jason. I'm choosing it because there's this brilliant book that we're going to talk about that Jason has written called The Problem of Alzheimer's. And I feel like everyone in the world needs to read this book, whether you've been personally affected yet or not.
Starting point is 00:04:13 But it also feels super personal to me. And I'm trying to maybe minimize some distance so I don't just get data nerdy because I've got a lot of data questions and nerdy questions, but I've also got a lot of hard personal questions. So this is my attempt to do that with you, if that's okay. Yeah, now Jason becomes like the mediating word to kind of balance between the science and the personal. Yeah. I want to start with this question and we start here always.
Starting point is 00:04:40 I would love to spend the first 10 minutes. Just tell me your story. Where are you from? How'd you end up here? I grew up on the East Coast in the tri-state area, which meant we lived in a commuter's town to New York. My father took the train in to work on Wall Street. And then probably one big event in my life was I went West.
Starting point is 00:04:59 I went to Northwestern to study and got out of the East Coast. And that was, I didn't even, I didn't realize so much at the time how much that made a difference for me to broaden my perspective on America and the world. Studied at Northwestern. And the key thing there was I was in a program that I was already in med school. And so I spent three undergraduate years, yes, doing the pre-med requirements, but with none of the psychological baggage that surrounds pre-med. And I could really explore interests in the humanities, history of science, philosophy, ethics. And those three years were critical for the remaining years.
Starting point is 00:05:34 It's why we're here today, in some sense, because I really created a grounding of understanding in the humanities. Knowing I was going to go to med school, went to med school in Chicago at Northwestern, and then anyway, ultimately would train in internal medicine and geriatric medicine. And now I'm on faculty since I finished my fellowship in 1997 at the University of Pennsylvania. Another key event in my life was I was actually going to become an intensive care doctor. And when I was at the University of Chicago doing my bioethics fellowship, I was matched also in a critical care fellowship. But I dropped out and switched to geriatric medicine and I chronicled
Starting point is 00:06:08 that in the book and it was one of the pivotal events in my life surrounding personal events, my grandfather had Alzheimer's, but also some professional and larger intellectual events as well that had me say, we definitely need more intensivists. Boy, have we seen that this past year. But we really need people to help take care of America's aging population, especially those who are disabled by dementia. And that was kind of my calling moment when he was basically killed by an academic medical center. So anyway, I've been on faculty at Penn. I co-direct the Penn Memory Center. I see patients every Friday for diagnosis, treatment, long-term follow-up care. And the rest of the week, I run a lab called the Penn Program for Precision Medicine for the Brain. And we study issues at the intersection of ethics, policy, and science.
Starting point is 00:06:54 We're really interested in biomarker transformation of Alzheimer's. And I'm sure we'll talk more about that. And I'm a writer. I write essays. I wrote a novel. And I've written, of course, this book. So this explains so much to me, to be honest with you. And I'll tell you what it explains to me. As someone who I took care of my grandmother and her care was really awful and we didn't know what we were doing. It was painful and traumatic. And I'm sure like many people listening, she's not the only person in our family with dementia. I connected with your work.
Starting point is 00:07:26 I want to understand this disease from someone who is a physician, who understands ethics, who speaks policy, and has a heart full of liberal arts and humanity. Do you know what I mean? Well, I was trained never to accept compliments, so I'm not allowed to say I know what you mean. But it is a disease that's a humanitarian problem. That's one of the points I make in the book. And it's a very distinct disease because it gets at the heart of what it means to self-determine one's life. In other words, that's why it's a disease. There's this pathology going on, and that explains it biologically. But what the problem of Alzheimer's is the problem of losing our autonomy, losing our ability early on to self-determine our lives. And so it's a disease that's wrapped up in our humanity, and therefore the humanities are essential to
Starting point is 00:08:20 understand, make sense of, live with this disease. So yeah, I know I get what you're saying. I do. And the stories I have in the book aren't just stories to embellish and add a little color in between. They're essential to make sense of the disease, the stories of patients and their families. Yeah, I agree. I'm going to start with this, and then I want to jump into the book. And I want to really spend some time in the beginning with the Harrisons. And I want to spend some time with the Harrisons because I have a lot of questions. I mean, in the end, what I want you to tell me is that every doctor's office will have like a scanning machine will be able to reliably and accurately predict where you are. There'll be a great drug to stop it in its track
Starting point is 00:09:06 and some supplements and diet to reverse it. That's where I want to end this conversation. Okay. I think one of the central points I arrived at in my career and frankly, many of my colleagues is this is a vast and all encompassing problem, a very heterogeneous problem, the problem of Alzheimer's. And we're not going to drug our way out of this. This is not like COVID, where there's not but one but three effective vaccines in less than a year. Okay. This is not like polio. This is like cancer. This is like heart disease. We should expect progress in therapeutics and diagnostics, spectacular progress, I think. And I could talk about that. But we're not going to look back on this disease the way we look back on polio. We're not, right? No. I'd say, well, that's cynical. You don't believe in science. No. If you look at the heterogeneity of what
Starting point is 00:09:54 causes dementia. I'm going to stop you there. What do you mean by the heterogeneity of what causes dementia? Yeah, you're good. You caught me. Well, dementia means disabling cognitive impairments. So multiple parts of cognition are impaired, memory, executive function, language, and they're impaired to the degree that you can't do your usual and everyday activities, make a meal, plan a trip, organize your medications. That's dementia. Many different diseases cause dementia. The most common is Alzheimer's disease, but there are other diseases. I've got to stop you right there. I want to make sure I understand what you're saying because this book freaked me out and
Starting point is 00:10:33 how much I misunderstood. Many diseases cause dementia. Alzheimer's is one. That's right. I thought you had to have dementia to have Alzheimer's. Once upon a time, that was the case. Once upon a time, my field medicine said, first you say someone has dementia, and then you figure out the cause of it. And the most common cause was Alzheimer's. That's true. And that is changing. We'll talk about that. But I think the key point I'm getting at is what the Harrisons raised to me, which is a couple who opened the book, is the most common question you hear when you give a talk in the community, when you meet patients and family members at the Penn Memory Center, etc. is what's the difference between Alzheimer's
Starting point is 00:11:16 disease and dementia? And the difference is dementia describes disabling cognitive impairments. Alzheimer's disease is the most common cause of those disabling cognitive impairments. Alzheimer's disease is the most common cause of those disabling cognitive impairments. It's the most common disease that causes dementia. But there are other diseases that cause dementia. Lewy body disease that Robin Williams had, he had Lewy body disease, a distinct disease. Frontal temporal lobar degeneration is another cause. Parkinson's disease causes dementia, particularly in individuals who develop it after their sixth, seventh decade of life. Huntington's disease. HIV infection, if left untreated, causes dementia. Syphilis, if left untreated, can cause dementia. So there's a
Starting point is 00:11:55 whole different set of diseases. Now, with respect to Alzheimer's, one of the stories I tell in the book is even the disease we call Alzheimer's disease, we have discovered is more complicated than just two simple pathologies at work. But rather, there's a variety of different pathologies at work, depending on one's age, and other illnesses that they have. And again, we're getting in the weeds quickly. But the point that led us into these weeds already is the idea that we're going to cure the problem of Alzheimer's, the problem of dementia, is I just don't think a rational policy for society. We should pursue better treatments, definitely in therapeutics, but to say we will cure it, I think sets us up for false hopes. And it's a little like buying lottery tickets to plan
Starting point is 00:12:42 your retirement. I mean, you may win. If you do, you're going to win big. But the odds are you're not, and then you've wasted all this energy and money on a goal that you just weren't going to get at. So I am not anti-treatment. We have to make more progress in therapeutics. But I don't think it's fair for me and you to have a conversation with your listeners leaving, oh, we're just going to cure this. We just need a little bit more time.
Starting point is 00:13:04 It's just not fair. Just like we haven't cured cancer. And yet we've made spectacular progress on cancer. But it still remains a vexing disease. So too cardiovascular disease. That's so helpful. And especially married to a non-interventionist pediatrician. I am not a let's label it and drug it as fast as we can to get rid of it kind of person. But it feels like, I mean, I'll be honest with you, Jason, I'm 55. At least 50% of my friends are caregivers for a parent who has, I guess, some disease where dementia is showing up. Yeah. And so is there this fear that gets in the way of doing what we can do because we want a miracle cure?
Starting point is 00:13:50 Well, I think there is a fear of the disease, a stigma that surrounds the disease even, that makes it difficult for America to rationally and I think humanely take on the disease. I mean, this disease is haunted by stigmas. The stigmas of either developing the disease or becoming a caregiver for someone with the disease. I mean, this disease is haunted by stigmas, the stigmas of either developing the disease or becoming a caregiver for someone with the disease. And let's talk a bit about the caregiver, because I think of all the diseases out there, this is a disease which early on creates, and my rhetoric is strong here, creates another patient, that is to say a caregiver. Yes. And I say another patient because many caregivers will talk about not just the work of care, and it's a lot of work, but also the emotional burdens of care.
Starting point is 00:14:32 Some of them even developing depression, anxiety, sleep disorders, their own other health problems as well, foregoing their own care in order to give care. I would be loath to sort of medicalize the role of caregiving. But I do think we need to acknowledge that caregiving, particularly for someone with dementia, is morally, physically, spiritually challenging. And one of the points I bring out the book is we don't support caregivers like we need to. We have done a poor job in that. And it's a chronicle of 40 years of misadventures and most of it politics, frankly, in our failed efforts there. Yeah, definitely. I went through every human emotion reading this book. And we're going to talk about the politics and the policy issues, especially of the 80s. That's what I flagged as my rage section. Yes, yes. Anger. I had a reader say, you seem angry. I'm like, yeah, I am angry. I am. We missed so many opportunities. Yeah. Now we're going to get there.
Starting point is 00:15:26 Let's meet the Harrisons because I feel like, and this is where you can really see the power of narrative prose that you have from those great days at Northwestern because this is a tough story. So you meet the Harrisons and I make up, and tell me if I'm wrong, I make up that you share this story because a lot of us see ourselves in it and it's a very common narrative about, is that true? Their story is very typical, very typical. Okay. One of the things that happens is it's really interesting. You interview the family. You talk to the family about what's happening because your experience
Starting point is 00:16:02 and my experience too is the person experiencing this will downplay it, minimize it, but family members are somewhere between concerned and freaking out, right? Yep. The most important technologies in a memory center are chairs because you need to have room to accommodate not just the patient, but someone else who knows the person well. And that's right. It's routine at a memory center. And this isn't just the one I practice at, but memory centers writ large. And I chronicle other ones. The US elsewhere is to have someone else come in with a patient to provide, in my professional language, you call it collateral history. There are knowledgeable, informant, quirky terms to be sure, but they describe that
Starting point is 00:16:45 role of the spouse, adult child, daughter-in-law typically to tell what they've noticed. And the reason is, and it's grounded in the recognition that individuals with cognitive impairment, number one, often have apathy and so lack the initiative to get help and or have trouble getting help. Namely, let's make the phone call and make the appointment. And number two, have trouble narrating the full panoply of the problems they're experiencing. Typically, they're aware there's a memory problem, but it's fascinating. Difficulty seeing the significance of it in their life, recognizing the disabilities. So that's why we seek out an informant. And frankly, the other reason why we seek out an informant is if we do diagnose cognitive impairment, we need that person to
Starting point is 00:17:29 transform into a caregiver, which is what, of course, happens to Mr. Harrison for his wife. He becomes her caregiver, as does his daughter. So what happens here first is some of the signs that people are talking about, this informant are talking about with you, in my own experience, for sure, too. Bank balances look weird. Yep. Money, meds, telephone, technology, transportation. Wait, say that again. Yes. When I do a teaching to residents, families, and the community, you want to figure out whether someone's having potentially worrisome cognitive problems that need evaluation,
Starting point is 00:18:05 money, medications, technology, transportation, are they having trouble managing their money, their medications, using technology like the computer, the telephone, et cetera, assuming they used it before, and transportation, namely getting from point A to point B. And most folks who sort of reflect on that with someone they know who has dementia, whether it's caused by Alzheimer's disease or other diseases, will say, yeah, yeah, the first signs were, you know, the checkbook was no longer balanced. Or no more long trips, just short trips. Or constant back and forth to the pharmacy to clarify the prescription. Or you kind of got confused with the iPad when it used to be okay. And it makes sense because the earliest problems caused by cognitive impairment are troubles with what we call executive function and
Starting point is 00:18:48 multitasking and memory, working memory. And those are cognitively demanding activities. The key point, I think, is oftentimes when people hear Alzheimer's disease, especially Alzheimer's, they think someone who can't bathe, dress, groom, feed, and toilet. Say that again, slowly. Yeah, I know. That's the doctor. No, it's super helpful, but I'm trying to listen to you and breathe at the same time, which is hard because it's so resonant. So when we think Alzheimer's, we think... Many people jump to what I would call the severe stage of the disease,
Starting point is 00:19:18 someone who needs help with bathing, dressing, grooming, feeding, and toileting. And that's what they think of when they hear the word Alzheimer's. And it is the case that if someone has the disease and lives long enough with it, many patients do need help with bathing and dressing and grooming and feeding. Many do, not all, if they live long enough. But that describes the last third of the disease. The first two thirds are trouble self-determining your life in the community. They're trouble ordering off of a menu at the restaurant. They're trouble deciding which medication to take when given options for medications. They're trouble organizing care if you've got to go see a bunch of doctors.
Starting point is 00:20:00 They're trouble making financial decisions, which is where the scammers and the fraudsters are, unfortunately, targeting our seniors. Special place in hell for those folks. Absolutely. I've got a family member who recently was defrauded, for example. But anyway, those are the early stages. And that's why this disease is so dreaded. I mean, of course, there's extreme disabilities of severe stage disease, but it's this loss
Starting point is 00:20:21 of self-determination which makes the disease so uniquely dreadful, which early on it chips away at a cherished value in our lives, which is we choose to live the way we choose to live. Each of us are sitting in our rooms decorated the way we chose to decorate it with the things we want and that we bought and that we picked out with or with other people as well. And this disease early on chips away at those very cherished values of exercising your autonomy early on. When I read that, I have it highlighted where you say this on top of page 11. Dementia, in a sense, is a disease of autonomy and the lives of persons with it are in extended conversation over a question. What's a good life when you're losing your ability to determine that life for yourself. You found one of the pearls of the book. You're right. I mean, that sums up what's the problem with dementia. Exactly. Jeez. So I want to get to this other highlighted place where I had such a personal reaction to this. Mrs. Harrison, I think they get a call from the
Starting point is 00:21:22 Homeowners Association, if I remember right. Didn't pay a bill. Yeah, they didn't pay a bill. Those kind of things are happening. And then can I read something to you from your book? Please. Mr. Harrison pushed back when I labeled his wife as mild stage. Her anger is so disruptive. This has to be severe, he countered.
Starting point is 00:21:42 The count or severity of the emotional and behavioral problem is not factored into staging, I explained. The focus is function and cognition because they best predict what to expect in the future and the time that will pass between diagnosis and death. Can you unpack this for us? Absolutely. Staging means how sick is someone, where are they at, and what's going to happen next. And when we stage dementia caused by Alzheimer's disease, for example, we look to function. We look to someone's ability to perform
Starting point is 00:22:17 their usual and everyday activities, managing their money, managing medications, transportation, technology, how impaired are they doing those things? And the degree of that impairment describes going from mild to moderate stage dementia, severe stages, troubles now with picking out clothing, putting it on, washing up, using a knife and fork, etc. Behavior problems are very common in persons living with dementia. By the way, I know someone who's living with dementia may object to me saying behavior problems, but sorry, I realize that I'm sensitive to that. But anyway, apathy, lack of initiative, anxiety, depression, anger, false beliefs, delusions, those occur, but they wax and wane like the moon. That is to say, they don't get worse and worse and worse. In the modern stage, patients may develop a lot of agitation, but then that sort of waxes away.
Starting point is 00:23:11 I have patients who early on have a lot of anxiety, and that oftentimes waxes and wanes as well. So we don't count the severity of those kinds of problems to stage how ill the person is, what to expect in the future, etc. So that's doctor talk. But what Mr. Harrison was saying was, I think, something that's very real, and you have to acknowledge it. Things like anger, apathy, etc., from the perspective of someone living with the disease, or living with someone with the disease, that describes oftentimes how bad it is, not to discount the functional deficits, but it's the anger and the apathy, which oftentimes makes it sort of, if you will, even worse. This paragraph that I just read that we've just unpacked, to me, really makes the case
Starting point is 00:23:56 for two patients. Yeah. So I think you could look at me and say, hey, Brene, I think your grandmother's at a mild stage. I think you may be at moderate caregiving fatigue. They don't always match, right? Yeah, I quote Arthur Kleinman in the book, a psychiatrist, an anthropologist who was a caregiver for his wife. And he writes out, she's happy most of the time. It's me who's suffering. And that statement resonates,
Starting point is 00:24:23 I think, with many caregivers. Oh, God, yeah. In the home where my grandmother ended up, there were some very common things you'd see in rooms. And I want to ask you about this, because this is just a personal question that I get to ask you, because I get to meet you. You would see signs in people's rooms that said, we're all still here. This is where you live, and you don't owe anyone any money. Yeah, yeah. Is that common, the worry? Yes. I chuckled at the, you don't owe anyone money. It's interesting how many caregivers will tell me about how their relative worries, you know, have we paid for this?
Starting point is 00:24:59 Are we up to date on the bills, et cetera? And the need for the reassurance around that. It's so tragic to hear that. Think about what that says. It says that the person living with dementia, as disabled as she or he is, still has sort of a sense of responsibility, a sense of sort of duty, a sense of worry that they haven't done the thing that they've always done all their life, which is pay my bills. And as annoying as that repetitious question may be for the family member, it's one of those questions that I think reveals the humanity, the identity, the personhood, and the personhood dimension that they're still worried about that bill. Do we pay those bills? Are we okay? It's a beautiful frame on it, really, Jason, that these folks that are in this struggle are
Starting point is 00:25:44 still feeling a sense of responsibility about the things that maybe they prided themselves on being good at. Yeah. And I say that, by the way, not to make the disease any better than it is, because all disease is bad. I keep on saying persons living with dementia. Do you notice that? Yes, yes. If you had interviewed me five years ago, first of all, I could never have written this book. Well, never is a strong word. But I would have talked about people who are demented. Really? I would have been adjectival. Oh, yeah. We used to say that routinely. Oh, yeah, he's demented. Yeah. Yeah. Well,
Starting point is 00:26:12 among the demented. And a change that occurred in my many of my professional colleagues, I've noticed this has happened. We're very now effortless in saying persons living with dementia. And I've noticed this is occurring in the field. And it's a very important, I think, linguistic term, which is to go from saying, oh, he's demented, to saying, oh, he's a person living with dementia, because the very word, the very phrase is an effort to do just that, bring out the personhood. Of course, recognizing that their personhood is being threatened, but one way that we can, if you will, counteract that threat is to acknowledge that there's still a person, albeit perhaps impaired. As a social worker that would be in Grand Rounds, I would be
Starting point is 00:26:56 very appreciative. I would be like, yes, with. This is an interesting place to ask you this question. Tell me about how the progression of working titles for this book reflected your own journey. Is that a fair question? Is that okay? That's interesting. How did you know that? Because it's true. I had this interesting progression of working. I have so respect the idea now of working titles. It's thousands of words. And yet in the end, a title makes you move it along. It's fascinating when you think about it. So the original title for this was My Profession, Confessions of an Alzheimer's Doctor, or My Confession, Professions of an Alzheimer's Doctor, which was classic Carl Lewis wordplay on the idea of profess and confess. But anyway, it was a sort of effort to try and say, I am an Alzheimer's doctor, and I'm
Starting point is 00:27:45 in this profession, and yet things haven't gone that well. Why are we in a crisis? So that worked for a while. But what I didn't like about it was that it risked being too much about me, and I didn't want to write a book about me. And then it became The House of Alzheimer's Disease. And I liked that title for a while. In fact, that's the title I sold the book with, by Agent 9, because it is a disease that in some sense is constructed. It's a real disease.
Starting point is 00:28:09 And I push back against the social constructionists who say, this is all just a social construction. And if we could just, no, no, no, no, there's a reality to this disease grounded in biology. But what we call the disease, how we respond to it is something that is by our own acts as humans. And that's the crisis, if you will. That is something that is by our own acts as humans. That's the crisis, if you will. That's why it was called the House of Alzheimer's. We built it, we made it the way it is. I also like the house because it invokes the idea of house in terms of nurturing and home and creating a space. We make a space for people with Alzheimer's. It's a powerful title.
Starting point is 00:28:39 And so that worked for a while. And I remember my agent, David McCormick saying, you're going to change that title. And he's right, we did. And then we changed it to The Disease of the Century, based on an essay that opens the book by Lewis Thomas, a very famous physician and ecologist, researcher, and author in the late 20th century. And that title worked for a while until I was sitting at a socially distanced gathering. And I said to someone, yeah, I got my book coming out, The Disease of the Century. Like, oh, it's about COVID. I'm like, no, it's not about COVID. So then I said, oh, my God, I got to get a new title.
Starting point is 00:29:15 But I like this title because the problem of Alzheimer's is the problem. It is. That is the issue. We have this thing called the problem of Alzheimer's, not the problem of dementia. And then the subtitle really tied it up, which is how science and culture made it a common disease, and then politics turned it into a crisis. So that's the title, how science and culture and politics turned a rare disease into a crisis and what we can do about it. So yeah, it's interesting. As a writer, I really walked away with working titles are really important, you know, and be ready to
Starting point is 00:29:45 surrender them. They're so important. But be ready to get rid of them. That's the key. I think as a writer, you can relate. You got to know when to say the title is so not working now. It's painful, but I ask writers often, I don't usually ask super medical nonfiction writers, but I don't consider you in that list. I think you're a writer's writer. I think you're a writer and you happen to be a doctor. That's how I would see you because I'm a writer. But the progression, normally, it's therapeutic in a way. It's about the growth and where you are in relationship to the content, I think. To use another word, the turning that occurs as a writer when you're creating a work. I like the word turning as opposed to revolution, although revolution is
Starting point is 00:30:20 turning, revolve. And it requires a lot of self-inquiry to know I've arrived at a different place in terms of what I'm writing about. But it's because I'm creating it, which is great. And it's moved in this new way. And that's a good thing. So let's change the title. What software do you use at work? The answer to that question is probably more complicated than you want it to be. The average U.S. company deploys more than 100 apps, and ideas about the work we do can be radically changed by the tools we use to do it. So what is enterprise software anyway? What is productivity software? How will AI affect both? And how are these tools changing the way we
Starting point is 00:30:57 use our computers to make stuff, communicate, and plan for the future? In this three-part special series, Decoder is surveying the IT landscape presented by AWS. Check it out wherever you get your podcasts. Hello, I'm Esther Perel, psychotherapist and host of the podcast, Where Should We Begin, which delves into the multiple layers of relationships, mostly romantic. But in this special series, I focus on our relationships with our colleagues, business partners, mostly romantic. But in this special series, I focus on our relationships with our colleagues, business partners, and managers. Listen in as I talk to co-workers facing their own challenges with one another and get the real work done. Tune into How's Work,
Starting point is 00:31:38 a special series from Where Should We Begin, sponsored by Klaviyo. Okay, here's what I want to know about. I want to know this story. It's going to be a tough story. You're going to have to translate it for me because it's pretty technical, but there's something important for me in this story. I want to understand the cluster that was the Eli Lilly meeting. I want to understand that.
Starting point is 00:32:04 Can you explain it to me as a layperson? Oh my gosh, yeah. The January disaster. Yeah. Because this is part of my wishlist. I want a scanner that becomes a standard of care in every internal medicine doctor's room. Yeah. But is that what's even in play here? Is Eli Lilly saying, hey, we've got a scanner that you can use? So the first part of the book, I tell the story of the transformation of Alzheimer's disease from a diagnosis based on people like me doing careful meticulous histories and exams to a diagnosis based on doing tests that pick up the biomarkers of the disease. And I tell the story of the first
Starting point is 00:32:42 biomarker that kind of broke through, which was the ability to image amyloid, which is one of the pathologies of the brain. Amyloid plaques are one of the two pathologies that are seen in Alzheimer's disease. Using a PET scanner, and a PET scanner is essentially a CAT scanner, but you get injected with a radio tracer and the radio tracer is picked up by the CAT scanner. And I chronled these two just fascinating collaborative scientists, Bill Klunk and Chet Mattis, who developed the first radio tracer that picks up amyloid in the brain. Okay, can I stop you right here and ask a question? Amyloid in the brain, is that what lay people hear about? Like, she's got white plaque in her brain? Yeah, the plaques. Yep, those are the plaques.
Starting point is 00:33:21 Okay, got it. Okay. So Chet and Bill discovered this compound, which would become known as Pittsburgh Compound B, otherwise known as PIB. And this is a tremendous revolution that occurred at the turn of the century. Anyway, another very young, super smart, highly ambitious guy named Dan Skrobansky would discover another radio tracer that was better for commercial sale. And I get into the book why PIB can't really be sold commercially. It's too hard to manufacture, et cetera. Anyway, in the end, Eli Lilly buys Dan's company, and that's a neat story in its own right. And Eli Lilly develops this radio tracer called Amavid that can pick up amavid. So this is all
Starting point is 00:33:57 a very encouraging story. And they have to move it along now, the regulatory pathway, they go through FDA. And what they did to get it through FDA, the science they did was utterly brilliant and also revolutionary. It really is a great story. But there's one more stop along the way, which is they've got to get Medicare to agree that we're going to pay for this test. And this led to the meeting outside of Bethesda of the Medicare Coverage and Advisory Committee, known as MEDCAC, to review the evidence to support whether this amyloid imaging tracer should be paid for by
Starting point is 00:34:29 Medicare. Is there value in this test is the question on the table. And so Lilly brings their experts and others come forward to make the argument that there's value in this test. And this MEDCAC, which is a very distinguished group of people who do work in health economics health service delivery quality of care okay very legitimate group of people and it's like one of those moments in history where the two different cultures came together and needed to arrive at an agreement and each presented and reflected upon their and they could not agree and it ends with a decision that the evidence does not support that this test has sufficient value to be used in clinical practice. And again, if you approach that question as someone like me, an Alzheimer's expert who really knows how
Starting point is 00:35:18 to properly identify someone who needs the test and how to interpret it. We could do it with value. The problem is, I'm a rare bird. There are very few physicians like me. And a test like that, at that time, widely available, everyone anticipated, and I think legitimately so, it was just going to be widely used and abused and not used correctly. And I think the result was Medicare said the evidence doesn't support the value for this test. And that still stands today as their decision. What would change that is some evidence that it really is valuable in the hands of the average prescribing doctor. And that would probably have to be a therapy shown to be effective that would treat the underlying pathology, which we don't have. It brings up the point of, it's not about a valid and reliable output from a testing
Starting point is 00:36:11 machine in my mind. Oh yeah, they totally agreed it measures amyloid. No one doubted that. It's about, is the training sophisticated for the general practitioner to be using this in a way that's helpful to the public? Is that the question? That's exactly what the problem was. That's exactly what the problem was. That's exactly what the problem was. And if you took
Starting point is 00:36:26 doctors like Dr. Solway or myself, Solway was one of the doctors that testified at the hearing, and he got angry. But it was like, well, yeah, no, Solway, well, yes, Steve, you can use this well. But if this test is widely available, it's not going to be used well. And the reason why is because America never invested and still does not have an adequate physician workforce to diagnose and care for people with dementia. Oh, God, that's true. To diagnose and care for people with Alzheimer's. And that is the problem.
Starting point is 00:36:53 That is why we have a crisis. If you think about it, as I write in the book, if we lived in a world right now where all these older adults were showing up anemic, fatigued, etc. And doctors are like, oh, my God, you've had undiagnosed. And it was going on for two years, bouncing from doctor to doctor with no clear answer. Until finally an oncologist says, oh, my God, you have undiagnosed cancer for two years. You've been seeing how many doctors and they didn't die. We would say this is a scandal.
Starting point is 00:37:18 But that's what's going on in America now. That the typical American wanders around for one to two years, bouncing from doctor to doctor, getting incomplete answers, half-truths, or just I don't knows, until finally they landed a physician who knows how to work up cognitive complaints. And that's not to indict American medicines, to indict a healthcare system that never invested in training physicians to do that kind of work. This is where you get angry. Yeah, we're moving into rage stage. Exactly. He can see me because we're on Zoom, so can see each other and my arms are up and the classic anger. I'm in classic rage pose. So you write, let me see if this makes sense. And
Starting point is 00:37:55 you may have to offer some context, but it just jumped out at me. So diagnosis, stage, education about the diagnosis and stage. This is the goal, right? This goes to not enough people trained to diagnose, stage, and then educate. This is what you write. Then support to develop a day that's safe, that's social, and that's engaged. This is the part that pissed me off. You don't leave the diabetologist's office. I guess that's a doctor who deals with diabetes. Yes. I'm going to say this. You don't leave the diabetes doctor's office with a prescription for an anti-diabetic drug and then say to them, good luck. Hope you figured it out on your own. When my husband has diagnosed people with diabetes, these folks,
Starting point is 00:38:44 not just the young patients, but their families, their grandparents, they're going to classes. Steve's meeting with everybody before the class and after the class, and then there's check-ins. But that is not my experience in my family. With dementia. Yeah, with dementia. And so when you say that we're not trained, I want to say this to you, and I want you
Starting point is 00:39:04 to tell me this is accurate or not accurate. We need more medical professionals, probably not just physicians, but across the medical board, trained, deeply trained, humanity, ethics, and medicine trained to be able to diagnose, to be able to stage, to be able to educate the diagnosis and stage. And then we need a complete support system in place that helps caregivers provide safe, social, and engaged care. That is the standard of care. That should be the standard of care. And that is not the delivered standard of care in America right now. And that's a problem. Why? It's a many hydro-headed story, but there are a couple of key reasons.
Starting point is 00:39:46 I think one of them back to the diabetes analogy is Alzheimer's disease has never enjoyed a good business model. And in America, a disease isn't fully a disease until it has a business model to sustain it and support it. This pisses me off. Yeah, well, you know, that's what we set up. We could change it. This is all politics.
Starting point is 00:40:06 So there's not a good money model. Yeah. If a disease doesn't have a good business model, it's not going to be widely picked up and treated and identified by the American medical system. And Alzheimer's certainly is one good example of that. Quite simply, the amount of time and effort it takes to do the evaluation and care you need is just not adequately reimbursed. And so the typical physician says, I just can't spend the amount of time that's needed to do the workup. And we just don't have a system of long-term care services and supports to provide the education and support to a family to create a day that's safe, social, and engaged. All of these are fixable things.
Starting point is 00:40:41 We just have to invest in them. If you're listening, if you're on your walk right now or you're driving to work, let's take a collective deep breath before Jason tells us about the 80s. Let's just take a deep breath. And so walk me in to the series of policy nightmares that led to where we are now. 1980 comes around. In 1987, dedicated families get together and form the organization that would come to be known as the Alzheimer's Association. These were families. Granted, they were very closely aligned with physicians, but these were family members that said, the system is not treating my family well. I can't get a diagnosis. I can't get care. I mean, their stories are harrowing, harrowing stories.
Starting point is 00:41:25 They form the Alzheimer's Association. They're determined to raise awareness, make people aware that senility is not extreme old age, but actually is caused by a disease, and that's Alzheimer's disease. Get Congress and NIH to focus on this disease research, and get Congress to support care, namely a long-term care services support systems. Long-term care services and supports. What does that mean? That means just like Medicare pays for your health care, your medical care, that Medicare
Starting point is 00:41:55 would pay for the training that a family needs to put together a day that's safe, social, and engaged, help support access to an adult day activity program, help support a family member to provide daily long-term chronic care to their relative, long-term care social insurance that exists in most developed nations, Germany, et cetera. Yeah, this makes complete sense. Yes. Japan has a program. Who could be against it? Yeah. Well, that's where the 80s come. So at the same time that it occurs in 1980, Ronald Reagan is elected president. Reagan and his administration would not pursue policies that were explicitly, quote, anti-Alzheimer's or designed to make the lives of caregivers like Hilda Pridgen, who was one of the founders of the Alzheimer's Association,
Starting point is 00:42:35 miserable. But their policies had that side effect because what would happen in the Reagan years and in the decades that would follow would be this tense conversation around we need to shrink the size of the federal government, deregulate, devolve things back to the states. Medicare and Medicaid reviewed as wasteful, bloated programs that needed to be cut. And there was zero appetite for expanding social insurance programs. And so whatever unity that existed going into the 80s around the need for a long-term care social insurance program would essentially evaporate by around 1988. And 1988 emerges as a key year in the story of Alzheimer's because in 1988, it was an open election in America. Reagan
Starting point is 00:43:17 was terminated out. And every Democratic and Republican candidate was interviewed by an advocacy organization called Long-Term Care 88, who was dedicated to getting long-term care social insurance passed in America. And every Democratic and Republican candidate had to line up behind that agenda. That's great. Except for one, and his name was George Herbert Walker Bush. And he would, of course, go on to win the election. What would follow would be the years of read-by-lips, no new taxes,
Starting point is 00:43:47 which would culminate in its sort of policy fulfillment in the Gingrich Congress, which was vehemently opposed to any expansion of the federal government and the expansion of the taxes in order to pay for a long-term care social insurance program, like through a payroll tax, which is how you have to do it. Right. So the exit of the 20th century with essentially a political stalemate that Congress cannot agree on how to provide long-term care services that supports the American family. And then the final bit about the 80s to make you angry is
Starting point is 00:44:15 continued frustration with increasing the research budget to adequately fund the research that's needed to finally expand the researcher's base, the number of physicians and scientists doing research in the space, as well as supporting their research. And that would not occur until about 2010 with the passage of the National Alzheimer's Project Act, signed into law by President Obama. So the 80s, from 1980 on, when the disease is recognized, was the same time when America would enter into a political conversation that just became a pitch battle for progress in the Alzheimer's movement. What's frustrating to me about this, Jason, this is my channeling my rage into very proper-ness
Starting point is 00:44:56 here, is it's not like the only caregivers I know are tax and spend Democrats. My friends that I know that are struggling, you have to have a shit ton of money to self-finance a parent. If you're extremely rich, you're okay. Or if you're poor, Medicaid will step in, but the services there are on the wait list. But for the vast middle class, they're neither rich nor poor, they're left on their own for a disease that can cost up to $180,000 a year. The crisis of Alzheimer's is a crisis in our economy. It's a crisis of unpaid caregiving. The triple digit billion dollar figures, when people say Alzheimer's is costing America $250 billion a year, okay? What lets you get to that number is you take the time
Starting point is 00:45:47 that you spent caring for your mother and you turn that into a wage that you could have otherwise earned if you were doing podcasts, educating hundreds of thousands of people. And that wage added up across all those many caregivers of the, I could have been working, but instead I was doing care where I was paying someone else to do the care. Okay, so I kept on working. But so that's how you arrive at the triple digit billion dollar cost of this disease. And so the complaints that you hear of, well, we can't afford a long term care social insurance program, we're already spending that program, the American family is bearing this bill, the American family is suffering alone. Now, I think one of the problems that's occurred, and I do think this is one of the sort of silver copper linings of COVID is we've realized what it means to be a caregiver. And when a system doesn't work for you to help care how bad it can be. I think suddenly all of us were sort of needing care or giving care this past year in ways that were sort of like the lives of persons living with dementia. Yes.
Starting point is 00:46:46 And I think maybe that recognition will allow kind of awakening of Americans right and left to realize that caregiving is a distinct duty. Yes, it's done by family because family is best able to give it. But it is a distinct role that needs to be supported with infrastructure, frankly, the way we have roads and other things. It's so beautifully put just now. Thank you, Jason. And so clearly laid out in the book. Medicaid, but there's a wait list. Yeah, because it's not a mandate in Medicaid. It's still a demonstration project, which allows Medicaid to say we don't have to give it to everyone who qualifies because we have just so much resources.
Starting point is 00:47:26 This doesn't feel far away from me because I happen to be living in San Antonio when my grandmother was first really experiencing it. And I would get calls at work and that she's walking down the street. It's summer in San Antonio. It's 100 degrees. She's got on a big coat and cowboy boots. And she's asking people if they know that her son, my uncle, was killed. So then you had to leave work. So you were less-
Starting point is 00:47:47 No, I did. I had to leave work until one day my boss was in tears and said, I'm going to have to fire you. Yeah. So this is the economic cost of Alzheimer's. Add that up across 12 million caregivers, and that's why it costs so much. And that's why when people say, we can't afford long-term care social insurance program, my response is, but we're already paying for it. Brene Brown had to leave her job. Yeah. That's less money she paid into Social Security.
Starting point is 00:48:14 That's less money she has in savings for her family. So we're paying this bill. It's just that it's the American family that's bearing the bill in a way that's unfair, uneven, and unjust. We have to have a system that recognizes solidarity. We can't put the burden simply on the American family. No. And for me, at the time, I'd go to her house and there would be cigarettes burning that she had forgot about or the stove would be on. And then I was like, let me bring her to my apartment, but I lived on the third floor. Because what happened was we've got to find a nice place
Starting point is 00:48:41 for her. Well, I mean, her husband was a forklift driver for a brewery. She was a beautician, but they didn't qualify for Medicaid. They were both retired. So then we're like, oh my God, we have to pay for it. So then she ends up in a place that's really all about, to be honest with you, a lot of Benadryl at night, securing your hands to something on the sides, and a lot of Ensure. So what do we say? Safe, social, engaged? Zero for three. Like hell. Hell on earth. But I think one of the things for caregivers too is, I mean, you have to agree,
Starting point is 00:49:18 there comes a time when you're loving someone with dementia, that safety prevents them from living with you. By the way, your story is moving and sadly all too common. Yeah. Add that up and that's why it becomes a tragedy writ large. Having said that, one of the terms I coined in the book I created was home looseness. It helps me understand what a dilemma that families face, which is home just isn't working anymore for the person. And it's a way once you recognize this homelessness issue, that they're not homeless, but just the place that we would think of as home just can't work anymore. You need to create a new
Starting point is 00:49:57 home. And that's why, frankly, one of the points I make in the book, maybe not as explicitly as perhaps I could have, but I'll make it here now, is we need nursing homes. We need long-term care residential facilities. I know that some say we should close them. Our goal should be no more nursing homes, care in the community. And I get it. We definitely should make every effort for people who are not homeless to be able to live in their homes. But particularly for this disease, given the nature of the cognitive problems patients have, sometimes the best place is, I'll use a word that'll be provocative, an asylum, in the true sense of what an asylum ought to be, a place that truly is safe, separate from the threats of the world around them. And we ought to think about how nursing
Starting point is 00:50:42 homes should be structured and run in a way that provide that asylum. And I think COVID showed us, again, we haven't achieved that with the nursing homes in this country. And so I guess I'm making a statement I think may have some of your readers, again, either screech their cars to a halt or whatever, but the doctor just said we need more nursing homes. Well, we need better nursing homes. Particularly for persons with dementia, oftentimes it is the best place for them to live. I'm not saying that they're the best places to live the way they're run now, but there's a need for them.
Starting point is 00:51:11 Absolutely. And I think your experience gestures to that. Yeah. And you're not shy. I mean, you jump right into gender politics in this book, which I really appreciated because when we talk about better safe places, we're talking about with caregivers paid, and these are often women, caregivers, often women of color, where these folks are paid a living wage, where they're trained adequately. When you say more nursing homes, no one wants to copy and paste what exists. We're talking about
Starting point is 00:51:37 something that's possible. Yeah. It's funny you picked up the gender issues in the book. One of many inspirations to help me think about writing this book was the stories of many women, including my mother. And I remember her telling me how when she, in 1960, 61, went to the bank, they had a credit card. They said, well, has your husband given you credit? And she's one of many examples of how in the lives of America's women, their ability to claim their autonomy finally and their self-determination is what A, made us, I think, begin to recognize that a disease that takes away autonomy is a disease. It's not just normal aging or natural aging. But number two, I think it all the more shows why I think this disease is particularly dreadful for America's women, because they've struggled to gain their autonomy, number one. And number two, they oftentimes are in the role of a caregiver. And so, therefore, are the front lines of our lousy system.
Starting point is 00:52:35 I had someone else ask me, so I guess if Alzheimer's happened to men in their 40s, we'd have a cure now? I said, well, maybe not a cure, but I think we'd have a better system of care. Yeah, and it's real. And you do also talk about, I thought this was interesting, that not only if I lose my job, do I lose that income, I lose my health insurance. Exactly. That's why the Affordable Care Act is like the Alzheimer's Care Act, because some of the Supreme Court throw it out. It gives the under 65 access to healthcare, which in America, when it was tied to a job, if you don't have a job because of your caregiving,
Starting point is 00:53:15 you didn't have healthcare, which is crazy. But the ACA solves that as long as we keep the ACA. Okay. So last question for you before we get to our rapid fire. Okay. You say your grandfather had Alzheimer's. He did. Terrible, terrible treatment. Yeah, he got killed by one of the best academic medical centers after he broke his hip. And they gave him great care, but they gave him lousy care.
Starting point is 00:53:32 I'm sorry. That's hard. That's okay. We love humanity, including dogs, like my dogs at home. Yeah, oh my gosh. That's okay. Jason has a dog. That's perfect. For those of us who have it in our families, one of the things that really drives anxiety is this feeling of,
Starting point is 00:53:53 I have a parent or a grandparent who has had dementia, possibly Alzheimer's. Am I next on the list? Are there things we can be doing now in our lives? What do you do if you have a family history of it that keeps you awake at night? All of us, if we live long enough, are at risk of getting Alzheimer's disease. All of us, if we live long enough, are at risk of getting dementia. More or less risk, to be sure, depending on things like family history. One of the key lessons that I drew from my research to write the book was, although we don't have any effective treatments to target some of the diseases that cause dementia, like Alzheimer's, though someday I think we will, the last 40 years we dementia because it's so prevalent. Why has that risk been declining? Well, multiple well-done studies show a variety of lifestyles and other habits that reduce the risk of developing dementia. And actually, the AARP has put together what's called the Global Council on Brain Health, which nicely summarizes what we
Starting point is 00:54:59 know now that does and doesn't reduce your risk. But simply put, good cardiovascular health is good brain health. And that's just not about like statins and hypertension, but like smoking cessation, exercise, Mediterranean diet. There's good data, unrelentingly good data that if you can get someone educated to high school, the access and opportunities that follow from that kind of education seem to reduce the risk of developing dementia compared to folks who don't get beyond a high school education. And multiple studies show this. So yeah, there are things we can do now to maintain our brain health, actionable things right now available. Okay, so I'm gonna put you on the spot here.
Starting point is 00:55:39 Tell me three or four things you do, Jason. Oh, I like exercise. I'm a big swimmer and runner. I do podcasts with fascinating hosts to keep my brain active. And I enjoy a glass of red wine or two every night. Okay. All right. Yeah, it's scary because I have found myself, especially since I've hit 50, that if I can't think of an actor's name in something, I'm like... Oh, gosh, word finding. Oh, stop. No, yeah, no. I'm like, we're here. This is it. It seems like, man, the anticipatory anxiety is going to kill us first.
Starting point is 00:56:12 It only gets a little worse when we start having all these biomarkers in practice. But again, that's part of the layout. We can deal with the threat to our autonomy from learning you're at risk for this disease, but we do have to take that on as a society, that someday we'll be able to better predict who's at risk. And when we can do that, while we'll certainly have treatments for people to reduce that risk, we have to structure society so that we can live comfortably at risk of this disease and not worry about our employment and stigma and other structural identity. We've got a lot of work to do there as a society. Yeah. All right. You ready? Yeah.
Starting point is 00:56:48 Okay. Number one, fill in the blank. Vulnerability is? Needing care and or giving care. You, Jason, you're called to be very brave, but your fear is real. You can feel it right in your throat. What's the very first thing you do? You know, I think about how I've been fortunate in my life. And I think about people in my family who had circumstances that were horrible. And my great, great grandfather who was fought in the Civil War because he was paid for by someone who would have been drafted. So he got paid to go fight for the union,
Starting point is 00:57:25 nearly had his life threatened in battle, and then returned and was employed by that man. Anyway, what am I trying to say? When I feel fear and whatnot, I think about how fortunate and lucky I am and what I've gotten, my opportunities in my life, the schooling I've gotten, the support I've gotten, the job I have, the skills I have. And that fear just kind of diminishes, both for what I've done, but also I have, the skills I have. And that fear just kind of diminishes, both for what I've done, but also how fortunate I am. Yeah. Some big time perspective taking, it sounds like. Yeah, I'm an old soul.
Starting point is 00:57:53 Yeah, yeah. I will say that. Yeah. What's something that people often get wrong about you? I think that I'm a writer who happens to be a physician or a physician who happens to be a writer. They're pretty enmeshed things. They're pretty enmeshed qualities. The one speaks to the other in kind of the dialogue. Yeah, you can tell that as a reader for sure. What is the last TV show that you binged and loved? Bridgerton. And Great. I loved Great. We loved Great. Oh my gosh. I wish there were seasons of great. Yeah.
Starting point is 00:58:25 It's a story of Catherine the great, but it's got a really hip angle and great costumes and settings, but it's got a great edge to it. It's the story of Catherine the great. Yeah. But Bridgerton and great. Whoever made great make more episodes. Okay.
Starting point is 00:58:40 You heard it here, right here. Yes. Okay. Favorite movie. The Big Lebowski. God, of course. Concerts you'll never forget.
Starting point is 00:58:49 It's a toss-up between David Bowie or Lou Reed live at the Tower Theater in Philadelphia. You saw Lou Reed live? That was amazing. Yeah. Okay, I'm jealous. He had Anthony and the Johnsons on as well. He sang Perfect Day. Yeah, I know his memorable was great he was
Starting point is 00:59:06 so cool i mean for me of course it was cool favorite meal cooked by me pan fried pork chops in the cast iron skillet and then you deglaze the pan with a little white vermouth and from there you can add all kinds of either savories or sweets, and it makes for a great, yeah. Yum. What's on your nightstand? I'm reading a very moving book by Kate Washington called Already Toast, Caregiving and Burnout in America. Just came out. And Katie Englehart's The Inevitable about the various ways people die in America.
Starting point is 00:59:44 Those are a little heavy, but for amusement, I'm also reading this book by Janos Kelly called The Temptation. It's a story of a young man in Hungary after the First World War growing up in extreme poverty. You'd think, why would that happen? Although the particulars are very unique and whatnot, it's a wonderfully timeless story of growing up and becoming a man, becoming a person. Janos and Kelly's Temptation. So give us a snapshot of an ordinary moment in your life that gives you real joy. Just a Polaroid snapshot. Waking up, having a cup of coffee, sitting down or working in my notebook,
Starting point is 01:00:19 and then easing into an essay and doing that for a little bit of time. There's nothing more satisfying than writing some good words. Yeah. Beautiful. What is one thing you're deeply grateful for right now? My family, my husband. Yeah. You're going to have to help me with some of these songs. We asked you for five songs that you couldn't live without. And I'm going to read the ones. Okay, so I was taken aback by Moby. So Why Does My Heart Feel So Bad by Moby from his album Play. You'll Be Back, Lin-Manuel Miranda's Hamilton, the best song. Let's Dance by David Bowie from his album Let's Dance. And then you said A Piano Sonata No. 32 by Ludwig Beethoven, not because of the song per se, but because the guy was stone deaf when he composed it and therefore performed
Starting point is 01:01:11 it, which is incredible. Yeah. And then tell me about this aria. The aria, yeah. Bellini's Norma is the opera. And act one, scene two, I don't do Italian, but it's like oh the quality is a two of a team or something about oh you are the victim anyway it's this wonderful aria of a tenor and two sopranos and the circumstances are he has betrayed both of them in other words one of them is his
Starting point is 01:01:38 wife one of them is his lover and each finds out oh my god you're sleeping with him and they all meet and they discover this. And what ensues, though, ultimately are the two sopranos, the two women, in this aria where, I don't speak Italian, I don't know what they're saying, but you can tell they've come together. They've gone beyond this traitor. And it is one of the most beautiful arias in opera. I have no idea of the whole opera,
Starting point is 01:02:08 but I'll often go to just that little bit to listen to it. Okay. So here's the writer in you. In one sentence, what does this mini mixtape say about you, Jason? It's the arc of my life. Once upon a time, I used to have coffee with cream and sugar. How could you never have it? Now I drink coffee that's black. but the point is I still drink coffee But over time you change I could no sooner drink coffee now with cream and sugar and yet I still drink coffee What am I getting at it? So I agree. It's an eclectic mix, but it reflects there's something called Jason there throughout all that But over this time Jason has changed. Yeah, so there's something that's Jason in all those songs But I will freely admit that the person who is Jason has changed. Yeah. So there's something that's Jason in all those songs. But I will freely admit that the person who is Jason has changed.
Starting point is 01:02:49 Let's Dance I listened to when I was young and really enjoy. I still do though. I still do. When this opera I found out a couple of years ago and I hated opera when I was young, I could listen to opera, but now I do. So I guess I'm a person that's always open to change and knowing that who I will be later will be different than now, whether or not I get Alzheimer's. That is beautiful. Thank you so much.
Starting point is 01:03:13 Well, thanks for having me. It was a lot of fun. Thank you for the work that you do every single day. The problem of Alzheimer's is incredible. We'll tell people where they can get it. And I feel so grateful that you've just brought yourself and your heart to this work. And you talked to us about it in a really real way. So thank you. Thank you so much. It was really great to be here. Hi, everyone. I hope y'all took away as much as I did from this conversation.
Starting point is 01:03:47 The book is policy, it's medicine, it's stories. And I do think for me, I wish I would have had this when I first started. I was so young trying to help care give for my grandmother. I was like, what kind of jacked up system is this? This cannot be, I just must not understand. And I think something like this would have been so helpful. You can find The Problem of Alzheimer's, How Science, Culture, and Politics Turned Rare Disease into a Crisis and What We Can Do About It wherever you buy books. We'll link to it on our episode page. His website is
Starting point is 01:04:16 www.jasoncarlowish.com. And he is at Jason Karlawish on Twitter. Y'all know that every episode of Unlocking Us and Dare to Lead, actually we have episode pages on brennabrown.com where we have resources, links, downloads, and transcripts, usually about five days, five business days after the podcast goes live. You can also sign up for the Brennabrown newsletter there
Starting point is 01:04:42 where we talk about what's coming and recap some podcasts and share big news. Thanks for being here, y'all. Stay awkward, brave, and kind. And when you're thinking about healthcare, remember, we've got to take care of each other. We are literally all in this together. See y'all next week. Unlocking Us is produced by Brene Brown Education and Research Group. The music is by Keri Rodriguez and Gina Chavez.
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