Conversations: Jason Karlawish, MD
SYNOPSIS
Alzheimer's disease used to be a rare diagnosis. But today, more than 5.8 million Americans are living with Alzheimer's and this number is projected to triple to 14 million over the next forty years.
In this episode, Emily discusses the mounting practical, moral, and ethical quandaries of caring for patients with Alzheimer’s and other dementia-causing diseases with Dr. Jason Karlawish, 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.
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GUEST
Jason Karlawish is a physician and a writer. He is 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 and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and has written essays for The New York Times, The Washington Post, Forbes, The Hill, STAT,and the Philadelphia Inquirer. He is a Professor at the University of Pennsylvania and Co-Director of the Penn Memory Center, where he cares for patients.
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Hosted by Emily Silverman.
Produced by Emily Silverman and Jon Oliver.
Edited and mixed by Jon Oliver.
Original theme music by Yosef Munro. Additional music by Blue Dot Sessions.
The Nocturnists is made possible by the California Medical Association, the Patrick J. McGovern Foundation, and people like you who have donated through our website and Patreon page.
TRANSCRIPT
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The Nocturnists: Conversations
Emily in Conversation with Dr. Jason Karlawish
Episode Transcript
Note: The Nocturnists is created primarily as a listening experience. The audio contains emotion, emphasis, and soundscapes that are not easily transcribed. We encourage you to listen to the episode if at all possible. Our transcripts are produced using both speech recognition software and human copy editors, and may not be 100% accurate. Thank you for consulting the audio before quoting in print.
Emily Silverman
Alzheimer's disease, believe it or not, it used to be a rare diagnosis. But now, people are living longer, and we know much more about the disease. In 2020, around 5.8 million Americans were living with Alzheimer's—a number that is projected to triple to 14 million by 2016. How do we deal with this crisis?
You're listening to The Nocturnists: Conversations. I'm Emily Silverman. Today, I'm speaking with physician-author, Jason Karlawish. He's a professor of medicine at the University of Pennsylvania, and co-director of the Penn Memory Center, where he cares for patients with dementia. He's published writing in The New York Times, The Washington Post, Forbes, The Hill, Stat, and The Philadelphia Inquirer, and his most recent work of nonfiction, The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. Before we chatted, I asked Jason to read a brief excerpt from his book. Here's Jason.
Jason Karlawish
The Disease of the Century.
By the cold Friday afternoon in January 2010 when I met Edith Harrison for a new patient appointment at the Penn Memory Center, her memory problems had been going on for at least four, maybe five years. Her husband, Ed, struggled to pinpoint exactly when they started.
At first, the problems were subtle. She was making more lists.
She snapped, "You do too," when he pointed this out to her.
"But I've always made them. You've just started."
She turned on her heel and strode smartly out of the kitchen. A door slammed.
Maybe it is just aging, he decided. And so he let it go.
In the months that followed, her memory trickled away. She'd forget an item from the grocery store and repeat a story she'd told him earlier in the day. Otherwise, though, she seemed fine.
It was the call from the home owners' association that caused him to worry. "Is there something wrong, Mr. Harrison?" asked the officious deputy director. "You haven't paid your fee in three months." For the first time since they married, he looked at their joint checking account. Her handwriting, like her, was still elegant, but the balance was in disarray.
Maybe this isn’t aging.
A visit to her primary care doctor for help was too quick and essentially useless. It ended not with a diagnosis but instead with an antibiotic. The nurse who telephoned with the results of the MRI of her brain reported there was no tumor or stroke, but there was sinusitis. The prescribed antibiotic caused two weeks of diarrhea.
That was in 2008. There were more doctors and more medications—for low thyroid, high anxiety and chronic fatigue—but no clear diagnosis. In time, they settled into a new normal. He did the bills. They shopped and cooked together, and she watched a lot of TV.
Diagnosis didn't seem to matter. It was their daughter who sounded the alarm. She was back from an extended tour of duty with the army in the Middle East. "Dad, something's really wrong with mom." She held her hands up before her father like she intended to shake him. They waited six months for a new patient appointment at the Memory Center.
Emily Silverman
Thanks for being here, Jason.
Jason Karlawish
Oh, it's a pleasure! For having me, thank you, Emily.
Emily Silverman
So, this is an amazing, comprehensive history of Alzheimer's disease, ranging from the science of it, to the culture of it, to the politics. and the history...just all different dimensions. To begin, I would love to hear how this book came about.
Jason Karlawish
At first, it was going to be about me. And it was going to be called My Confession: Professions of an Alzheimer's Doctor, you know, because I had all these stories, all these narratives of my patients in me. And that worked for a while, to sort of get me into the narrative mode, but then I realized this is not about me. That's a little too solipsistic. It's about the revolution that I was living through, which is the biomarker-redefinition of the disease.
But the more I looked at that, the more I looked to the past, and I saw—my gosh—this disease has been through a wild history over the course of the 20th century. And so then it became The House of Alzheimer's Disease, which I liked because it was going to be about how a house is something we construct by design, by our hands. And this disease, I realized, had a heavy dose of social construction to make it a disease. It's a real disease, but it's got a lot of social construction. And I remember my agent said that that title’s not gonna work.
Then the last title was The Disease of the Century, which became the title of the introduction, which I just read. But then COVID hit. And a friend said to me...When I said, "So I got this book coming out, The Disease of the Century," and he said, "Oh, it's about COVID!" Ugh! God.
Anyway... And then the new title came: The Problem of Alzheimer's. And I think that really puts it all together. Yeah.
Emily Silverman
In the book, you talk about how you did your internal medicine residency and then started a fellowship in critical care.
Jason Karlawish
That's right.
Emily Silverman
But after a year, you switched over to geriatrics. So tell us a little bit about that.
Jason Karlawish
Yeah, in the history of critical care medicine, I'm probably the only fellow that left critical care to go into geriatric medicine. As I write in the book, people thought that I must have done something scandalous—that it was kind of a lateral like, you know, let's just move him off, you know, park up someplace quietly. But yeah, it was a journey of a decision. It was not an impulsive decision.
I finished residency. I like taking care of sick people, I will admit. The sicker the better, in some sense. And at the same time, I finished residency, I was very interested in aging. What is it? How is it different from a disease? I went to University of Chicago, fully intending to be a critical care fellow. And I did work in a chronic vent unit. And I was realizing my interest really are moving towards, "Why are these people in this vent unit?" and the ways we cared for these—many of them—quite frail and elderly individuals.
And as often is the case in life when you make dramatic switches, that it has to be something intense, personal, and emotional. And that's what happened when my grandfather fell, broke his hip, and within a few months later, at major academic medical center, was dead. You know, he had Alzheimer's disease. In retrospect, all we knew then was dementia. We did our best. And I put all that together. And absolutely no criticism to critical care. By God, have we seen how important that field is in the last few years—months—you know. But I just knew, we don't need another critical care doctor. We need more people to take care of people like my grandfather. And so I made the switch to geriatric medicine. And I've never looked back at it with regret. Never, ever, ever thought otherwise on that decision.
Emily Silverman
Can you talk a little bit about the difference between Alzheimer's disease and how that is different from aging, mild cognitive impairment, and dementia?
Jason Karlawish
Well, I like to think of dementia as disabling cognitive impairments. In other words, you were cognitively unimpaired, based on the norms and standards for how we measure cognition, but you have cognitive impairment, and it's causing disability. And the key word there is "disability." In other words, something that you used to do given your environment and your cognition, and now you need someone else to assist you—something else to assist you. Doesn't have to be a human, although often it is.
In contrast, mild cognitive impairment describes cognitive impairment that just causes inefficiencies. Takes you longer. More of a struggle to do things. And I had the fun in the book of writing the history of MCI, which was a heck of a lot of fun, because it's one of the wildest histories out there. So then the question becomes, well...What causes MCI? What causes dementia? So those are just descriptive states of disability or pre-disability, if you will. And the answer there is, some diseases do.
And one disease—and for a while, we thought it was almost the only cause in older adults, and that's, of course, not the case, the more we learned—but one disease that causes dementia or MCI is Alzheimer's disease. And you can take that down to the level of biology. You can see misfolded proteins in the brain of someone who has dementia or MCI.
But what tips, I think, the balance to call something not aging, but disease—and this is one of the points, I think, kind of animated the writing of the book—is culture. Is society. Is constructing an idea of suffering. And in this disease, I think what's unique about the suffering is it's different than the sufferings of cancer, or heart disease, or COPD. It's the suffering of losing your ability to self-determine your life, to not be able to do what you want it to do the way you'd like to do it.
And that's what's unique about this disease. And I think it's why it's uniquely a modern disease, because you have to widely respect self-determination—autonomy is something that all adults should enjoy—before the taking away of it couldn't be viewed as just natural, but rather something that is unacceptable, and therefore, should be considered a disease.
Emily Silverman
In the book, you talk about how, when patients and their families come to the Memory Center, one of the first questions that you ask is, "What's a typical day?" Yeah, so why is that question so important? Why do we start there?
Jason Karlawish
It's interesting. Just before that I get their history of their life that, up till now, "Where are you born? Where'd you go to school? What work did you do?" But, you're right! After that's done, I think they're often a little like, "Where are we going here?" Because instead of saying, "When did the memory problems start?" or whatnot, I say, "So, tell me what a typical day is... Okay, gets up about what time? okay, eight o'clock? Okay. And then what?" What I'm trying to do—and I guess this is a geriatrician in me—is find out how their brain is functioning in their world, in the here and now. And that gives me a wealth of data that almost pre-stages the diagnosis. Because if I'm hearing things like, "Off to the library, get some books, and then he meets his friends for lunch." If I'm getting a day that involves a lot of cognitive activity, I get a sense things are pretty mild.
And when I ask this of the family member who's the informant, as we call them, I'm getting a sense of how well they know the person. What's the relationship, the depth of contact, the intimacy. So I get a lot of data about cognition, function, quality of life—although I find that term somewhat problematic—the quality of the informant from what amounts to a fairly non-threatening narrative of what's a typical day.
Emily Silverman
There's a line in the book that says, "A person with quadriplegia...needs devices such as a scooter or wheelchair. A person with dementia also needs a device. We call it the caregiver." It's a great line. And we actually had on Dr. Jessica Zitter, I don't know if you know her, she made a short documentary film, called Caregiver: A Love Story, which is really a portrait of caregiver burnout, and the crisis around the way we don't support caregivers in this country.
So, I'm curious, as a dementia doctor, how do you approach the caregiver in clinic? Because I imagine a lot of the treatment is not just the patient, but of the caregiver as well.
Jason Karlawish
Well, yeah, that line really is a line that—it's funny others picked up on it—because for many caregivers, the calling out, the recognition, that they are, in some sense, a wheelchair, for the mind of a person with cognitive impairment is like, "Yes, that's what I am!"
And I think a lot of the time I spend with caregivers, among the things I do, is to help them acknowledge the role as not just a bunch of tasks, to daily activities, instrumental and basic (if they're severe stage), but it's a morally, intense task. Because you control the truth, you control the world around the person. Suddenly, in the beginning, oftentimes, collaboratively. But over time, more and more, you're in charge of shaping a world for that person. And that's a morally, ethically intense activity. And I kind of help them think through that moral challenge. And as the disease gets worse, if it gets worse over time, to help them recognize that they're facing an existential dilemma. They want to do everything they possibly can for their relative and at the same time, live their life. And they have to realize they just are going to need to make some choices. They can't do both things. And yet they need to do both things.
A key moment after I get the history about the patient, you know, from the caregiver, from the informant, I turn to them I say, "And how about you? How are you doing?" And I do that three second pause because, you know, in medicine, we're taught when you ask a really important question, you give that three Mississippi at least. And nine times out of ten, something pops out. And then the next question I ask is, "Is there anything you need?" Just as open ended as that. I don't want to sound maudlin or silly or whatever. But that's why there's a box of tissues on the table because many need it.
And then finally recognize that the word caregiver, many people don't use it, they don't like it. They actually like..."I'm not my dad's caregiver, I'm his daughter!" And actually, that thwarts caregivers getting help, because they don't see themselves in this unique role that needs help, that needs to be recognized. And indeed, until society recognized caregiving, this disease really didn't exist. It was hidden in plain sight because we were just looking at dutiful daughters and wives and spouses doing what they do, and not seeing it as a distinct role.
Emily Silverman
When you were talking about caregivers, you were talking about how often they are the ones who control the truth. So, for example, somebody living with dementia says, "Where's mom?" Then the caregiver has to decide: Do I tell them that mom is dead? Do I pretend mom is still alive? What do I do? And you talk about this idea of loving deception. And I had never heard that term before. So talk a little bit about that.
Jason Karlawish
It's a morally problematic practice. Namely, I'm going to tell you something that I know is not true. That is a lie. But I'm doing it because I'm trying to help you. And it shows the moral intensity of caregiving. You're right.
The classic one is, "When's mom coming home?" And, first of all, imagine the first time you hear that question, it's just like...whoa. And many caregivers tell you the story of, "Well, I tell them, 'Well, Mother passed a long time ago.'" And for some patients that can be extremely distressing. Why didn't you tell me, etc. And then it's asked again. And then it's asked again, and then you answer again, and they arrive at this position of, "Well, every time I answer the question, I cascade grief and anger." So the solution is loving deception. "Oh, she'll be here in about an hour. But while we're waiting let's..." and then you hope you can move on. something else.
But there is a third way I talk about in the book. My friend and my colleague Anne Basting taught me this. And it's to answer the question with a question, That is, to say, to prompt the person to be creative and not so much worried about the truth of the lie, but what can we co-create together? "So, when's mom coming home?" Maybe the third way is, "Well, if she were here, what would we be doing with her right now?" And just take it from there. And I think it's a way to kind of recognize and bring the person into a world of, "What's your imagination going to tell you?" I think it's a third way that recognizes that some persons living with dementia, despite very advanced cognitive impairment and disability are still capable, in some respects, of creating. They just have to be given the same assistance we give them to dress or eat a meal or order off a menu.
Emily Silverman
On this topic of creative care, you talk about how many of the Alzheimer's revolutionaries didn't necessarily revolutionize the science, but they set out to change culture. So tell us more about that.
Jason Karlawish
I think the key ones were folks in the late 70s and early 80s, who wanted America to see, and the world to see, that the loss of your ability to determine your life—to make decisions to live well—is not just normal aging. And the family members who are coping with this are themselves struggling, and also being driven...many of them to the edge of, if not bankruptcy, poverty. And to get people to see these problems in a different way, and reframe them, and recognize that these people are patients with a disease, a disability that needs help, and that "I'm a—yes, a devoted spouse—but I'm also in this caregiving role, without any access to the services and supports, that I need to be able to provide care for my relative. Because who better than me, given what I know about him or her, to provide that care?"
So it's this reframing and rethinking of what was considered natural, normal, just what families do, a personal problem, becomes reframed as a cultural problem woven into our society that we need to address like we do address other large, cultural, social problems. So I think that's one big sort of reframing in the way we sort of think about things and recast them.
Emily Silverman
Thinking about changing culture, one of the physicians who you track in the book revolutionized medical culture by researching delirium, and just changing simple things in the hospital, like sleep-wake and removing lines and catheters. I mean, that that was an example, I think, of how changing medical culture can influence patient outcomes.
Jason Karlawish
Yeah, the whole third part of the book is about things we can do now that aren't so much the latest gadgets and such, but they are about reframing and rethinking the quotidian aspects of life. And, you're right. Sharon Inouye is the founder of the modern understanding of delirium. And I had the privilege of interviewing her and getting this fascinating story of this young person who realized there's all these delirious people, we don't know why they're developing delirium, and we just sort of accept it like the winter—"Oh, it just gets cold! Bundle up and deal with it." ...saying, "Well, wait a minute!" You know, we wouldn't do that with a spiking fever. We'd say, "We should probably figure out why this person's got a temperature of 101." And the rest is the story, she tells of how she's learned the skills of epidemiology to figure out what might be the precipitants.
And then began to try interventions to see if we can, now that we've identified the precipitants—which as you point out, are things like a disruptive environment for sleep-wake cycle, etc. Such that the result is she—like what happened with dementia—she transformed it from just the world around us that's hidden in plain sight to something that's a problem that we need to address and that we can address.
Now, of course, the tragedy of her story, by no intention of hers whatsoever, is up until not terribly long ago, you had a hard time to get health systems to care about delirium. And you still go to units for older adults, and they've got double beds, because they're oftentimes given the wing of the hospital that's the oldest wing and yet to be renovated. And so you've got patients in double beds, keeping each other up with their TVs and whatnot. We can run that list in ways that you just sort of slap your forehead and say, "Surely we can do better."
I profile the guys also who, essentially, created one of the first hip fracture programs. They're at this failing Hospital in Rochester, New York. The interviews were sort of amusing because the guy who was the chair was like, "I mean, the place was falling apart. We were almost going bankrupt. So you could kind of do anything!" And so, it was a very inspiring story of what I call “discernment,” which is recognizing, "I'm doing something wrong. I'm part of the system that's causing harm. I'm tolerating people sitting in the ER being fought over as to who's going to admit this nursing home resident who's getting progressively more confused and delirious, because the cardiologist doesn't want 'em and surgery won't take them." And the rest is just the tragedy like what happened to my grandfather. Well, they realized we have to change the way we do things. And that's what they did, and their hip fracture program is one of the earliest ones to show: it wasn't about a better surgical technique, or better antibiotics or better whatever. It was about using the tools you had more wisely and thoughtfully.
Emily Silverman
I want to take a moment to talk about the science and the pharmacology of Alzheimer's. And just—just briefly kind of going down this list here. Aricept, brain supplements, brain games like Lumosity. Does any of this work?
Jason Karlawish
Well, Aricept—donepezil, the generic—works. That is to say, compared to placebo, you can see statistically significant differences on measures of cognition. The challenge has always been does that difference translate into clinically meaningful improvements for patients on function, well-being etc. I think in the end, the field has spoken about those drugs, which is...they have an effect, but the effect seems minimal and not sustained for a long time.
Emily Silverman
And then what about the supplements and the brain games? Because this comes up a lot. My dad—I was just home in Florida last week, and he pulled out this bottle of some supplement that's supposed to sharpen your brain.
Jason Karlawish
Yeah. Well, the supplements are a good example, yet again, of how we collide with culture. You know, and the FDA de-regulated supplements such that—as long as they don't make a claim about a disease and its treatment—the standards for approval are essentially as long as it's not harmful, you can sell it, as long as it meets the criteria of, "a supplement." And so that's why we see vigorous advertisements, typically around the time of the nightly news for Prevagen, for memory. And people buy it up.
Prevagen—and I'll call that one out—was studied to be a treatment for Alzheimer's, but the trials were negative. And so it was repackaged as a nutraceutical. Many of them have, like Prevagen, been studied in clinical trials and persons with dementia and failed to show any meaningful effects upon cognition.
Having said that, my summary or take on what you can do to maintain your brain is... there are activities that have been shown to maintain brain health: cardiovascular exercise, general cardiovascular health, cognitive and social engagement. And the AARP has put together a website, The Global Council on Brain Health, and they have nicely summarized the data about what does and doesn't benefit you. And it's written for a lay-friendly audience. And I highly recommend folks go to that—The Global Council on Brain Health.
Emily Silverman
We've heard a lot in the news about Aducanumab...I don't know if I'm pronouncing that right?
Jason Karlawish
Yep! Aducanumab, now rechristened as Aduhelm.
Emily Silverman
So my understanding is that the FDA approved this medication, and then there was this outrage from the geriatrics community, because the trials show that it actually didn't really work, and it was gonna be really expensive. And that money could be used to do other much more helpful things like, for example, vision care, dental care, custodial care. So I feel like I can't interview you about Alzheimer's without asking you about this, because it's so hot in the news.
Jason Karlawish
About the problem of Aducanumab, and it is a problem. I'll set aside that policy issue that you've raised, which is a very legitimate issue. Namely, what's the best way to spend our healthcare dollars for the care of persons living with Alzheimer's disease? And the reason why I'll set that aside is, that's not FDAs job. You know, when they make a drug approval, they don't question what the price might be, and is it a right price point. But let's set that aside.
I mean, the decisions around Aducanumab—if you would ask me at 10:59am on June 7 of this year, 2021, "Is giving Aducanumab, based on the fact that someone has elevated amyloid, akin to giving someone a statin because they have elevated LDL with the same expectations of benefit?" I would've said, "That's a provocative hypothesis in need of further testing." At 11:01, the FDA said it's good enough for Biogen to market the drug on that basis. So FDA approved the drug on the basis of lowering of amyloid potentially will translate into clinical benefits. Even FDA admits further studies needed, and I think for the field, this was an enormous slap in the face. Because we were working very hard on trying to show just that—with several studies in the works, by industry in cooperation with federally funded researchers, etc. And all of a sudden FDA just decides we're going to respond to desperate patients and approve this drug with not standard but accelerated approval. That's one point.
The other point that I think irks the field is, this was never discussed. All discussions were around standard approval. Is this drug safe and effective for the treatment of Alzheimer's? FDA turned around, and in a private way—and all we know is that internally they debated it. And they debated it, apparently, and they disagreed—but they still went ahead. They used the accelerated approval mechanism. And I just do not understand why, for a disease as vast as this, for a first in its class drug with such consequences, that the decisional rubric of accelerated approval was not discussed in a way that allowed some discussion in the field. And so it's just left a bitter taste in many in the field, that this was not the right time for this drug. It may work. But the data that were available were not adequate to make that claim.
Emily Silverman
In the book, at a certain point, there are characters who keep harping on this idea of a cure. Yes, we need to take care of the caregiver. Yes, we need to reorient our culture around this reality of aging and memory loss. But what about a cure? Let's do a moonshot—cure Alzheimer's.
And I'm curious how you feel about that. Because when I think about that, on the one hand, yes, that would be wonderful. But on the other, if people are cured of their Alzheimer's, like, what are people gonna die of?
Jason Karlawish
It's very interesting how the Alzheimer's field does this circle the wagon, turn inwards, and ready-aim-fire, by pitting care against cure. I mean, cancer doesn't do that. You don't go to a cancer center and say, you know, "We got to focus on cure, or if we focus on care, we're just distracting." They manage both. And I think probably for the Alzheimer's field, it's because the field started out so far behind, not even being able to get a diagnosis—let alone long-term care services and supports, let alone any effective therapy—that I think when you look at the vast size of the problem, you can understand the desire to say, "We've got to just focus and not make it so big that people walk away and say, 'This is hopeless.'" And what better way to kindle hope than to say, "Well, we'll cure it." And so I can understand how that happens. But then it leads to this bizarre, almost pitting of the one against the other.
And so I think that's another reason why the care-cure debate occurs in this field, because you have to start walking into a conversation about long-term care services and supports. And you get caught up in the politics of welfare in America, which is so partisan and vicious.
Emily Silverman
In the book, you talk about this fusion of patients and families monitoring wealth and health, and you call it "whealth care."
Jason Karlawish
Yes. W-H-E-A-L-T-H care.
Emily Silverman
And I've had a little bit of personal experience with this. My mom had dementia, but my dad was really lucky in that he had purchased a long-term care insurance plan decades ago. And so that was really helpful.
And so, as we were going through this process of setting up caregiving for my mom, my husband and I thought, "We should probably buy these policies for ourselves now." And so we started looking into it. And we met with a financial advisor. And the financial advisor told us that these long-term care policies really aren't very good anymore. And at the end of the day, he was like, "Just set up a bank account and just put money into it and start saving and do it that way."
Jason Karlawish
Yeah, the insurance industry has walked from it... Briefly in the 90s—and, you know, there's still some holdouts who say it's the solution, you know, "All Americans will buy long-term care insurance, like the way they buy car insurance," and whatnot. And it just doesn't work. It's a difficult market to underwrite, because the costs are so catastrophic for some and not at all for others. And you're right, only maybe 5% of the population has it and the insurers are walking away from it. They're not writing those policies.
Emily Silverman
I don't mean to be alarmist, but that's crazy! Like...we're screwed!
Jason Karlawish
Well, the United States is unique amongst most developed nations, for having no system of long-term care services and supports for its citizens. It exists if you're poor enough and qualify for Medicaid, but then that becomes a state-by-state allocation of resources, which in some states is decent, but in many states isn't. Moreover, the benefit to receive long-term care services and supports through Medicare remains for, at least now two decades, part of a waiver program. And a waiver program allows Medicare to make it available—Medicaid, excuse me—to make it available only insofar as the budget allows it because it's considered experimental or a test. Because it's in the waiver programs, the states can say, "We're only going to give 300 million this year for long-term care services and supports. And when we spend that out, that's it until the next budget year." And so if by nine months, you've spent the money out, people go on the waiting list until the next year. And so that's why there's a long wait list for the poor to get these services and supports which are oftentimes not adequate anyway.
For the rest of America, caregiving—chronic caregiving—is a matter of just what you were kind of told. Save up the money and spend as best as you can, until you don't have any more to spend. And this is why Alzheimer's is a crisis: because it's an economic problem. Because if you take the labor of caregiving—the time that your father spent caring for your mother, and turn it into a job, but put a wage on it, or have him pay someone else to do it—that's what adds up across the twelve some-odd-million caregivers into the triple digit billion dollar cost of this disease. It's the wages of care that make this disease so expensive. And you're right! Right now, in America, those wages are paid out of pocket. That's lost income from someone who otherwise could be working, which is lost tax revenue, which is lost payments into the Social Security system, which is failure to advance at work. So we're paying for this already. And so the complaints of, "What? We can't increase taxes and create an expensive social insurance program." We already are paying for this. It's just the American family that's paying out of pocket.
And my colleague Norma Coe, an economist here at Penn, points out, for example, that this cost, which is the equivalent for the American family, of paying for a year's worth of nursing home care per year. And so this is an incredibly expensive cost. It takes away from tuition that would pay for the next generation to be educated—so it ramifies across generations. And that's what Americans are living in right now. In Germany, they don't have that. They have a long-term care social approach. In Japan... We're unique in developed nations for simply not making this available. This is not the norm amongst developed nations.
Emily Silverman
Toward the end of the book, you talk about technology, and how it interfaces or may interface with Alzheimer's disease in the future. And you talked about researchers who are installing surveillance systems in the homes of these people with dementia. So they can see: when they go out the door, when they use the computer, when they use the stove. And how this big data aggregates and how you can pick up patterns. And how maybe someday this long question of what's a typical day, might get replaced by just the surveillance data, in some ways might even be more accurate. So tell us about this, like, how you envision technology shaping the future of Alzheimer's care.
Jason Karlawish
A lot. I'm of the view, with many in both philosophy and psychology, that the mind doesn't end at the skull but extends beyond it, and is created in part by how we interact with objects around us. So if you take that premise as true, well, as the mind begins to have impairments—that is to say, as higher cortical function becomes impaired—devices around that mind will begin to show that that impairment is occurring. I mentioned in the book, for example, one of the bits of data from the group in Oregon, at ORCATECH In Portland, they showed how persons developing mild cognitive impairment show a progressive steady decline in the time they spend on their computer. And that's something that your computer can measure. Yours is doing it right now! That's just one of many examples of how the ways our brain interacts with the world can be monitored in order to detect that our brain is having problems.
Driving! We can know what route you're on, whether you're on the right route, whether you're going too fast on that route, whether you've run the stoplight. I mean, we know from monitoring driving, how your brain is functioning. Managing finances. The system that records your transaction knows if you've missed, paid a bill, double paid a bill, etc. Your gait speed. I mean, there's just a host of things we do in the world that are data. And we just have to collect the data.
So the next step, of course, is, as I point out in the book, if we collect it, aggregate it, derive the patterns from it, we can pick up cognitive impairment early. And indeed, that's what is happening and can happen. And of course, that will radically upend a lot of the way we think about and conduct our lives and who has access to the information, how will they interpret it and use it, how would it be presented back to you.
It becomes a very fascinating, ethical challenge upending the usual clinical counter where you come to me with a problem. Now, in some sense, I guess the technology will tell you you have a problem, then you have to come to me. Or maybe I would know about it, because I'm monitoring you, because that's part of our health plan, that I have this monitoring access. Lot of very interesting questions there that are going to radically, potentially restructure, revolutionize the ways we think about the conduct of healthcare. And where the clinic space ends becomes rather porous at that point, because it's your world all around you, as opposed to you coming to me and telling me what's wrong about someone else or yourself.
Emily Silverman
Toward the end of the book, you talk about this idea of "homelooseness," not homelessness, but "homelooseness." You talk about this place called The Lantern, which I just thought was so interesting. So tell us what is "homelooseness"? And what are some of the solutions that are being suggested here?
Jason Karlawish
Well, I thought I coined it but I realized I actually read the term in James Wood's extended essay called "The Farthest Place from Home," where he's reflecting on the life of being an immigrant to America and never really being able to go back home. So his idea of "homelooseness" was a little different than mine. So it's a play on homelessness. So someone is homeless, we say "They don't have a home." Homelooseness is this kind of liminal state of "home isn't working."
I mean, the most dramatic expression of and in the lives of persons living with dementia is when they are in the home, they've been in for 50 years and say, "I want to go home." What they're telling us is this place that has been my home is no longer working for me. And I'm looking for a different home. And I think we have to listen to that. There comes a time when a residential long-term care place is perhaps the right place for someone living with dementia. And in this sense, I disagree with those who say nursing homes should all be shuttered and closed and all care should be delivered in the home. Many nursing homes the way they are now should be shuttered and closed. But they should be reopened and reimagined from the sort of ward-like structure that they have to a much more home-like environment, a home that is tailored towards persons who are living with these disabilities.
And so, yes, I interviewed, for example, The Lantern, the founder of The Lantern, Jean Makesh, who created a community in Indiana, that reproduces that town in Indiana circa 1939. And I try to provoke the readers to reflect on that, which is, in some sense, much like the loving deceptions, these are architectural deceptions. These are creating a world for someone that isn't the world that they're actually in. And Makesh's is really interesting, because like, at night, the ceiling gets dark, and then during the day, it gets light. And they reproduce the seasons in some sense, and the temperature is controlled. And again, I mean, they—it's like a downtown circa 1938. I guess I get the appeal of it. And certainly they say the people who live there like it, and maybe for some, it is the right place to live. But it is requiring us to create a fake environment for people.
I'll give you another example. There's this adult day program in San Diego, called the Glenner Center named after one of the discoverers of the amino acid sequence of amyloid. And it's also designed in San Diego circa 1958. And in the library, the photo on the wall is Eisenhower. So if someone says, like, "Who's the president?" I mean, do we have a conversation like, "President Eisenhower today said that we..." I mean, that's grand deception.
Maybe we should step back from the architectural deception and more think about aesthetics and taste. What is it that the person likes? What kind of decoration—what kind of scheme, what kind of feel makes them feel good? I mean, everyone has taste, and we should think about creating homes that appeal to their tastes. And there are long term care facilities to do that. In the Netherlands, the adult day activity programs are explicitly laid out and promoted as, "If your relative likes a rural setting, we've really made this look like a rural setting in the Netherlands. If they're more urban, we've really set this up in a more urban way," etc. And I think that that's the beginning of ways to think about assisting the selves of persons who are impaired to feel like they're at home, rather than deceiving them and saying, let's pretend it's the Netherlands in 1938.
Emily Silverman
I didn't know about a lot of these communities. And I was reading about The Lantern last night, and I texted an article about it to my cousin, who's an architect. And I said, "Here's this fake, indoor town, 1939 suggested as an alternative to the depressing, hospital-like environment of the nursing home. What do you think: cool or creepy?" And he replied, and he was like, "Creepy!!!!!" ...with like, many, many exclamation points. But, you know, it really provoked me to think like, well, would I rather be there? Or would I rather be in one of these nursing homes.
One of my favorite parts of the book is where you write, "Arguably, deception kindles feelings of separation, creates a distance between persons living with dementia and the rest of us. They are an audience, and we are actors. And yet, we have to do something. There is no neutral position in the world we create for persons living with dementia. All the world's a stage, and we have to make choices about how to perform."
Jason Karlawish
Yeah, with apologies to Shakespeare, but I mean, there is no neutral position. The question is, what worlds will we create for them, because we're talking about folks who are fairly disabled. I mean, they're not going to be able to, you know...they can obviously give us input, but we have to sort of figure these things out with them.
And I think that's where I'm taking my thinking in this space, which is, rather than the deception of, you know, we're actors on the stage and you're the audience for entertaining. Let's break the fourth wall and work on this together and create something beautiful together...recognizing, yes, of course, many of these folks have disabilities such that they need a lot of help to do that. But I'd rather approach it that way than this kind of theater. Because that leads to othering. And othering is the next step towards distancing, and distancing is the next step towards, you know, what's the point of this? And what's the value in it? And then you get into dark and ugly places at that point.
Emily Silverman
We've covered a lot of ground. Is there anything that you would like to talk about that we haven't touched on today?
Jason Karlawish
Well, I guess two points I make in the book. We've made a lot of progress in a fairly short period of time, when you think about the arc of history, with understanding the biology, the pathophysiology of this disease. I mean, 20 years ago—almost, yeah, 20 years ago, to this year, it's the anniversary—we were finally able to image the pathology in the brain of a living human. Oncology was doing that for centuries, once light microscopes were being used looking at tumors. So in...it's just been two decades, we could finally see the disease in a living human. It's just been about 10 years in our drug trials, that we're able to test drugs. And so I think we should be hopeful that we will develop ways to more precisely diagnose the diseases that cause dementia, and perhaps develop therapeutics, which for some will be very effective, for others will be minimally effective, and for others won't work.
So I guess my message is: we should be hopeful for progress and diagnosis and therapeutics. But we're not going to drug our way out of this complicated problem. Because the more we study, the more we do those two decades of research we've done, we see this is an extremely complicated set of diseases. Alzheimer's disease is really Alzheimer's diseases in the plural. There are many pathologies at work. Some will be treatable, some not so treatable.
And so the next message is: we're going to have to learn how to live with Alzheimer's and other diseases that cause dementia. And I think the way to do that is to see them as humanitarian problems, because unlike other diseases that are diseases for the body, I mean, these are inherently diseases that are wrapped up in our ethics. And they're going to present us some very morally challenging choices. And I'll also say my last point is this, when we develop effective therapeutics for this disease—and that is not Aduhelm/Aducanumab—but when we develop effective therapeutics for this disease, we're going to begin to tame this wild beast. And in taming this wild beast, that's a good thing. But it will present some very interesting choices, which is, when would we stop treatment? If it's not a cure, if it's only slowing—which is good—when would you say, "Enough! I'm done with treatment." And when you say, "Enough, I'm done with treatment," then what next? What treatment would follow that, when potentially you have years more of decline? And I guess I'll leave you with this anecdote. I was talking with a colleague, who works like me in a memory center—diagnoses and treats patients, does research. And he said, "I don't care if Aducanumab works or not, I wouldn't take it." I said, "Why? If it works, you know." he said, "Well, why would I take a drug if I have mild cognitive impairment? I say the moment I have mild cognitive impairment, speed it up!" I was astounded because he knows the experience, he knows the disease, he wouldn't even want to live with cognitive impairment. And that's the kind of moral challenges we're gonna face with this disease. And, one of the points I close the book with is we've got a lot of work to do as a culture, to have thoughtful conversations about this before we jump to some rather dark positions and statements and policies.
Emily Silverman
Well, thank you so much for being here. Thank you for writing this book. I have been talking to Dr. Jason Karlawish. And the book is called The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It. Highly recommend to anybody interested in neurology, psychiatry, geriatrics, medical ethics, and of course, doctors and patients everywhere. So check it out.
And thank you, Jason, for being here with me today.
Jason Karlawish
Thank you so much, Emily, for having me. It was a real pleasure.
Emily Silverman
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I'm your host, Emily Silverman.