Dementia is a general term for loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life. Alzheimer's is the most common cause of dementia.
As life expectancies increase, more and more people are at risk of developing dementia. But what does it even mean?
According to alz.org, in the United States, there are more deaths from Alzheimer’s and dementia than from breast cancer and prostate cancer combined. In the past few years, Alzheimer’s deaths have increased by 16%. In 2021, Alzheimer’s will cost the nation $355 billion. By 2050, this number could be over $1 trillion. More than 11 million Americans take care of people with Alzheimer's or other dementias without getting paid for it.
Join me and Dr. Jason Karlawish as we chat about how you need to prepared for the increase in cases of dementia. We talked about how often people are getting dementia. 100 years ago, people did not get it as much and the cases were not diagnosed. They were not dying from it as often. Now, there are more cases of Alzheimer's than before. What would you do if you went back in time and talked to someone with memory problems? If the person has problems early on in life, they can be diagnosed with Alzheimer's. To help them, we need policy changes that will improve the well-being and dignity of people living with dementia.
[00:00] Pre-intro dialogue from Jason Karlawish
[01:41] Friendly get to know you and Hanh's experience with dementia in her family.
[04:05] Introduction to Jason Karlawish
[04:46] Jason's background, including what exactly sparked his interest in Alzheimer's and Dementia?
[06:06] It seems like a hundred years ago, people didn't die of Alzheimer's as often. Was it just underdiagnosis or something else?
[09:36] If you could go back a hundred years, what would you do to educate people about Alzheimer's to prevent us from being in the place where we are today?
[11:25] How are we able to diagnose Alzheimer's early, even before a person has any memory problems?
[14:40] Things we can do now to prepare for the future increase in cases of dementia?
[17:41] What effect does a negative stigma around memory loss and dementia have on those with dementia?
[19:20] Ageism and its role in these stigmas?
[19:38] What could we do to break down these stereotypes? On a personal level and cultural level?
[23:42] Your thoughts on Biogen's new drug?
[25:19] Why are some people confused about the moral aspects of Alzheimer's medication?
[27:06] Thoughts on future success as an Alzheimer's medication?
[28:45] Ways to improve Alzheimer's disease treatment today without using drugs like Biogen's, returning to old treatments, such as HRT or Donepezil?
[31:45] Implications social media have for our sense of determination in a society?
[33:02] Anything else that you would like to add?
[34:49] Where can listeners find you and find your book?
Dr. Jason Karlawish is a physician and writer who researches and writes about issues at the intersection of bioethics, aging, and the neurosciences. Dr. Karlawish's work has aired on NPR (National Public Radio) as well as The New York Times, Washington Post, Forbes, Philadelphia Inquirer, and many others. His book "The Problem of Alzheimer's" will be published February 2021 by Macmillan/St Martin's Press in association with TED Books; this book tells the story of how science culture politics turned a rare disease into a crisis that we can do something about!
Find out more about Jason:
The problem of dementia, whether it's caused by Alzheimer's or Lewy Body disease or frontal temporal lobar disease or vascular disease, the problem of dementia is a very unique problem because early and relentlessly, what dementia means is you're losing your ability to self-determine your life. And that's a cherished value, but hard won and hard fought value that we only really universally enjoyed until the mid of the 20th century. So in that sense, this is a very modern problem and reflecting a very important modern value naming the ability to self-determine your life. But related to that is I think dementia reveals how we're interconnected. This is in some sense a disease of humanity and it forces us to recognize, "Yes, we're losing our ability to self-determine, but it reveals how interconnected we are when we are self-determining our lives." And I have a cautious optimism that we can see this as a humanitarian problem and tackle it as one. We're not gonna drug our way out of each and every single disease that causes dementia.Hanh:
How are you today?Jason:
I'm good. I'm good. Where do I find you? By the way.Hanh:
I am in Michigan. I'm about 15 minutes away from Ann Arbor.Jason:
I was going to say your area code, when I started to type it in friends and Michigan's names started to pop up. I'm like she's in Michigan.Hanh:
Yeah. Yeah. You're in Pennsylvania, right?Jason:
Yeah, I'm in my home in Philadelphia.Hanh:
Okay. All right. Yeah. We went to see a Pirates game. I think it was two and a half years ago when my son was in high school playing baseball. And while we're there, the team went to see a pirates game and yeah, we love it. So I miss those days,Jason:
Yeah. Talk to, tell me about it.Hanh:
Highschool baseball games That's great. I want to make sure that I pronounce your name, right? Is it Karlawish?Jason:
Okay, great. And I'm Hanh. Hanh Brown. Well, great. And you know, I have my own journey of dementia. I've known three people in my family, that's headed. My dad and my mom now my mother-in-law. So, that's why I have a very soft spot for that. I've lived through. It for the past eight years. And it's it's quite a journey. One thing that I will say is that I'm in a better place now that I can talk about it more comfortably. I think earlier in life I still felt that we were very unprepared. I don't even know where to search other than online, but nowhere near like a support group. So I, I personally felt that it was an, something to hide something to be ashamed of. But like I said, it's been eight years, so our family is in a better place and I can talk about it. I can share with folks and I think the key is just bring it to light because it's one of the illnesses that come with aging. That's too common.Jason:
Yeah. I think the ability to talk about dementia to call it out with that word and the diseases that cause it like Alzheimer's disease or Lewy Body disease. I think the more we can name the problems and talk about it, the more we can go directly after the stigma that haunts the disease. Because I think one of the sort of sources of stigma is people won't talk about it. I think that's a big source of the stigma.Hanh:
Great. Okay. So, um, do you have any questions before we get started? I have a lot of questions if that's okay.Jason:
Take it away.Hanh:
Today, on Boomer Living I'm joined by Dr. Jason, Karlawish. Dr. Jason Karlawish is a professor of medicine, medical, ethics, and health policy and neurology at the University of Pennsylvania. He researches and writes about issues at the intersections of bioethics, aging and neurosciences. He's also the author of multiple books about Alzheimer's and a writer for the New York times and other publications. His work has led to widespread acclaim in his field. So, I'm excited to learn today from all of his varied experiences and specialties. Dr. Karlawish, thank you so much for being with me today on Boomer Living.Jason:
You're welcome. It's a pleasure to be here, Hanh.Hanh:
Great. So, can you start with sharing a little bit about your background, including what exactly sparked your interest in Alzheimer's and Dementia?Jason:
Sure. I went to college at Northwestern. I was in an unusual program. It allowed me to essentially be admitted to medical school right away. Before I went to med school, I spent three years in college, but I did those three years in college without the traditional frankly, burdens of pre-medical training. And so, I was really allowed to browse, to roam. And I think those three years were really pivotal years for me in terms of a body of scholarship and knowledge beyond the sciences that informed the work I do today. Anyway, I went to Northwestern, graduated med school, went to residency in internal medicine, not sure what I wanted to do finally figured out, I think I want to be a critical care doctor. And actually I was at the university of Chicago studying critical care. But a couple of events happened in my life professionally and personally, and I made a switch to geriatric medicine. And then in that field, I readily focused on Alzheimer's disease, that naming more broadly dementia as my clinical focus. And it's really been a very fulfilling career merging that interest in ethics and values, writing and science medicine. And I've been working in this space now for 22 years and I'm looking forward to more.Hanh:
Thank you. You know, it seems like a hundred years or so ago, people didn't die of to Alzheimer's as often. Whereas at the end of the 20th century, it was much more common. What happened there? Was it just underdiagnosis or was there something else at play?Jason:
Even more fundamental than undergrad diagnosis, no diagnosis, because Alzheimer's really wasn't recognized as a disease until about frankly, I'll put a date on it in 1980. But let me qualify that, the disease was recognized in the early 20th century, by the physician whose name is Dr. Alzheimer's. His name was Alois Alzheimer's. And in the book I recount how he and his other German colleagues were studying persons who had dementia, persons who were old that's to say over 60, 65, 70. But also some rare cases, unusual cases of persons who were under 60. And at that time in the early 20th century, if you had dementia and you were old over 65, 70, 80, they said that your dementia was senility. And that senility meant it was an extreme stage of just aging, a confluence of a host of things, but not a disease, not caused by pathology. In contrast the rare cases of dementia, individuals who were in their fifties, they were sought to have some sort of disease. The bottom line is what Alois Alzheimer's and his colleagues did, and I recount this in the book, "The Problem with Alzheimer's", they began to look closely at the autopsies of the brains of both their young people, fifties young, and their older individuals. And they they began to see was there's this common pathologies within these two brains and the conclusion that they were reaching around 1911, 1912 was maybe the persons with senility aren't extreme aging. Maybe there's actually a disease going on. Just like the young people who can't be have see now dementia, cause they're not aging yet. They're not old. And that was really revolutionary work. And again, just to remind you, 1910, 1911, 1912, that's when they were doing this work, but what of course happened was 1914. In 1914 Germany fell apart that the world war that begins to follow. Anyway, things disappeared for awhile, namely, a record studies of dementia and older adults. Because of what happened in Germany, because of all this work was happening in Germany, it was very German work. But in the late 20th century, a host of events and I recount in the book "In Culture and Science Converged" to, to say, these older adults who have senility, that's not extreme aging, that's a disease. And we think it's this Alzheimer's disease that we always thought was just a rare disease. And so, it's a fascinating story that occurs around about 1976 to 1980. When science and culture converge and redefined dementia in an older adult, not as senility, extreme aging, nothing you can do about it, and nothing medicine can do about it. But instead they say, "No, this is a disease. And if it's a disease, that means doctors should diagnose it. They should treat it." And the researchers did study it to figure out better ways to diagnose it and to treat it. And that all the start until about 1980, mostly in America, but also in the United Kingdom. But America really in the beginning led that charge.Hanh:
Now, if you could go back a hundred years, what would you do to educate people about Alzheimer's to prevent us from being in a place where we are today?Jason:
Yeah. A lot of that conversation would have been not with the scientists or the physicians, but with the public and the politicians, because as I said Alois Alzheimer's was German. He and his colleagues who did this research, they were all German, they were German nationals or German speaking. They worked out of German universities and asylums. And I keep on bringing that up because it wasn't, that kind of work wasn't going on in France, et cetera, England, certainly not the United States. But anyway, Germany fell apart because of political issues. And it really fell apart. War, economic collapse, vicious nationalism, vicious antisemitism, national socialism, et cetera. And so, I guess my message would be, pay very close attention. If we could have gone back a hundred years, that the things you're doing in society are going to ramify into other things that you don't realize, namely, the ability to take care of adults who have disabling cognitive impairments, for example. So, the lesson to contemporary times is, be very mindful about the way you run your society and your politics and the wars you fight. And the economic system you create, because it can, ramify into things like the kind of care you're able to deliver people, or as it were not deliver people. And so, I think while those lessons about Imperial Germany seemed just like history, was no empire now in Germany or America, but the political events in Germany are very instructive to political events in the early 20th century are very instructive to even now about how politics can turn a disease into a crisis. And in the case of Alzheimer's, it is politics that have turned this disease into it a crisis.Hanh:
Hm. I understand that nowadays Alzheimer's can be diagnosed earlier than ever. Sometimes even before a person has any memory problems. So, what enabled this advancement?Jason:
Yeah. So, the, one of the stories I tell in the book and the first part of the book, part one it's 4 parts parts called "Alzheimer's Unbound". It's a fascinating story of beginning in the eighties and really picking up at the turn of the century at the beginning of the 21st century of science redefining the way we think about what is Alzheimer's disease? More particularly, who is a patient with Alzheimer's disease. So, for example, when I trained in the late nineties into the early aughts, in order to be diagnosed with Alzheimer's disease, I had to make another diagnosis first. And that diagnosis was the diagnosis of dementia. Meaning I had to say that someone had disabling cognitive impairments, meaning they had troubled with memory, attention, concentration, and those problems were causing them difficulties doing daily tasks. So, what I'm trying to say is if you didn't have dementia, you couldn't be diagnosed with Alzheimer's disease. That's all changed. And I talk about how there were two discoveries that transformed the way we think about a patient with Alzheimer's disease. One of those was the discovery of this syndrome called mild cognitive impairment by researchers at the Mayo Clinic. And this describes the state of cognitive impairment that causes inefficiencies with daily activities. The person's not disabled, they're just inefficient, but it's a risk factor they found for becoming, for developing dementia. And so, that meant that you could begin to think about diagnosing Alzheimer's not when someone had demand, but when they had mild cognitive impairment. The second big event which was truly revolutionary, was the ability to measure the pathologies of Alzheimer's disease, not in a deceased person, but in a living person. And of all the diseases of the bodies of the body, excuse me, brain diseases are very difficult to visualize. If you've got a disease in the liver or the organs, you can do an endoscopy or a biopsy, et cetera. We don't biopsy the brain except in certain rare kinds of clinical problems. And so, for years you could not see Alzheimer's until you got the brain out of the skull, which meant of course someone had to die. But I talk about researchers who had around the two thousands, to announce the results of the studies they did that could visualize the pathologies in the brain of a living human. And so, that takes us now to 2021, where you're right, we can see the pathologies of Alzheimer's disease unfolding in a brain. And we can see that in a person who has dementia, we can see it in someone who has mild cognitive impairment, and we're able to see it as well, in someone who has no cognitive impairment, but perhaps just a bit of symptoms at most. And so, you're right, the future is the ability to detect the disease even before someone has dementia mild cognitive impairment. And that's a very promising future because of course, if you then had a treatment to give someone, you could slow down the progression of the disease, you could delay the time before someone develops dementia, for example.Hanh:
As we age, there will be more people with dementia than ever before. Now, are there things we can do now to prepare for the future increase in cases of dementia?Jason:
So, as individuals, there are things we can do. And also as a society, there are things that we can do. As individuals, I think, I think it's smart to live, with the understanding that there's Going to come a time, when you're going to have some amount of disabling cognitive problems. It might not be because of Alzheimer's. It might be because of vascular disease or another disease. It might be because of a host of different events in your life that affect your brain health. But my point is the notion that you're going to live without any cognitive impairments into your eighties and nineties, may happen. And there are certainly are people who live into their nineties who are essentially cognitively unimpaired. But the prevalence of cognitive impairment after the age of 80 is about 20%. That's pretty high. And so, what do people, what should people do? I think what they need to think about is, "How, if I am developing cognitive problems, will they be detected? And once they're detected, what will I do?" And I think that gets to issues of creating a network of people around you, who can watch over, look after you. And if you start to develop problems can intervene. And it gets to very personal aspects of life. Like you have to start thinking about this happening in you're, with your finances. Who's going to watch over to make sure if I'm making mistakes with my finances, I don't cost, it doesn't cost me money. I don't lose money. I don't get defrauded. I don't get exploited by people. That's just one example of one particular activity, but it's an important one to bring up because financial problems are some of the earliest problems people have. So, in summary for individuals, I really think there's a logic in the role for planning, around how you're going to deal with loss of cognition, mild though it may be, has nothing to do with planning for the end of life. It actually has to do with planning for sort of the loss, of the ability to self determine one's life, not the end of life, but the loss of the ability to self-determine one's life.Hanh:
It's a tough one. It's tough to bring it up. It's tough to talk about among family members. And I think it's great, just what you're doing.Jason:
We need a system of longterm care services and support. And then, and within that system, we need to invest in the kind of services people need, like adult day activity programs. They're out there, but they're not as enough. They're not as many and they're not well-resourced. And they need to be resourced and integrated into healthcare systems, the same way that we have surgery centers integrated into healthcare systems. And then finally, we can use technology right now to better monitor our brains for cognitive problems and detect problems as they arise. We can do that in the workforce. We can do that in the home such that we're not waiting for a disaster to happen. So, memory centers, national long-term care, social insurance improve the quality of long-term care services and supports like adult day activity programs. And use technology to detect cognitive impairment, and when it occurs, be able to intervene early. Those are the things we can do right now. We just have to muster the political will to do them.Hanh:
Yeah, I concur with that. And I know there's some in progress but it needs to be exponentially full force out there. So, now I know there's such negative stigma around memory loss and dementia. What is the effect on this stigma on people with dementia on their families? What do you think?Jason:
So, stigma takes two forms, Self-stigma and Public-stigma. So, we'll start with the second one. Public stigma is when other people learn something about someone and after they learn that they think less of them, they distance themselves from those people. They assume negative attributes to them. They expand their perception of how impaired the person is that they're more impaired than they are. So, that's public stigma. And you see that played out in the lives of persons, living with dementia and their families members, that their friends and family disappear, And they feel isolated. Self-stigma is when you yourself feel distance from others because of something about you. And you may even, for example, choose not to tell people about something because you fear that if they learn it, they're going to practice Public-stigma. Self-stigma also takes the form of people feeling a threat to their ability to do things, once they are labeled with something, they feel "Well, now I can't do something.", and they question their abilities. They doubt their skills. And in the disease, in this problem of dementia, whether it's been caused by Alzheimer's or other diseases, stigma haunts the lives of patients and their caregivers, the distance thing, the feelings of inadequacy. Those are all byproducts of stigma.Hanh:
Do you think ageism plays a role in these stigmas too? Or do you think they are two separate issues?Jason:
They're hidebound, I would say. And then no question that the stigmas that surround dementia are hidebound with the stigmas that surround the perception of the abilities and worth of individuals who are older, yes.Hanh:
I guess, what do you think we could do to help break down these stereotypes? Both at a personal level and as well as more cultural level?Jason:
Yeah. We talked about this a bit already. When you and I were chatting before the show, which was, let's start with the cultural level, let's think about the words and images we use to talk about dementia, a very common set of words and images. It's often used to talk about dementia is, and I'll use them, not because I like them and use them myself, but just for illustrative points. Yes, before death, the living death, one becomes a zombie. You die in mind before body. There's a host of lines and expressions around frankly death, that contribute to those cultural tropes that create the stigma. Another source of stigma is the words we use to describe dementia. We, up until a few years ago, it was not uncommon amongst myself and my colleagues that we would talk about someone as having, as being demented. We would say, you know, your title. We would say, oh, he's demented. And now we don't say that, actually. It's interesting at meetings and talking with my colleagues we're very explicit, was talking about persons living with dementia. And we S we will say, "Oh, he's a person living with dementia.", or as "A person living with dementia." So, what you're trying to do is separate the diagnosis from your sort of perception of the entire person. So, that language shift is very important. So, those are some things we can do in culture. I think as individuals, one thing we can do, which is what some of my patients for example have done, has been more open with talking about their cognitive problems. I have a patient who was a, a sports writer, here in Philadelphia, a very popular sports writer for the Philadelphia Inquirer. And he would, he ultimately started writing columns, not about sports, but about having Alzheimer's disease. And he would become very well-known for that. So, I have a patient who was a sportswriter, bill Lyons, and he was famous in the, in Philadelphia for his sports writing. He also then became famous for writing about as Alzheimer's disease. And Bill Lyons was a real hero. He wrote very moving vivid columns about his experience having Alzheimer's disease. And it's that kind of candor, the openness of an individual with the disease and his family to talk about it. That does a lot to break down the stigma and to humanize the experience of having the disease.Hanh:
It's true. It's true. I I've been blessed enough to have spoken with some folks living with dementia. I think we just need more folks like that to speak out. We just need more of a voice to show that there is life with dementia. And we just do the very best that we can as our cognition declines, but we're not looking at the the decline, but we're looking at celebrating life along the way, at whatever capacity that we can. And I think it's so important. And of course, I didn't know this until I passed the hurdle we're at the later part now, but I think it's so important to not only how should I say be saddened by the fact that you can't verbally communicate so much, but it's just the fact that you're there. Be present in the moment. It's your and your loved one's disposition. And just read their temperament. It could be, they just want you present or they want to listen to music or sing even. Pick up on those cues, cause I think too much, myself included, we look at the loss right away, which is "Oh, what happened?", because we're looking at them where they are now, where they used to be, but we really need to embrace it at the moment and look forward to many things ahead of life. And there still is a lot of life.Jason:
Implicit in what you're saying is a very important point that the experience of being a caregiver, is very contingent on the nature of the relationship you had with the person going into that. And I think that's a very important point for why we really need and value family caregivers, because of the relationship they've had with the person before they develop the cognitive impairements.Hanh:
Yeah. That's that's a tough one. It's a tough role. Okay. So, I'm going to shift gear. We're going to talk about the Biogen's new drug. So, what are your thoughts about that new drug? I guess what are the benefits and downside of this drug?Jason:
Well, my thoughts about Aducanumab is it's a promising drug, that needs more study to show, if in fact it's an effective drug. It's a promising drug, and up until earlier this month of June, I was of the view, it needed more study. Unfortunately, the FDA decided it should be available for prescription. I have no objection that someday it may be prescribed and should be prescribed, but I didn't think that data were adequate now to prescribe it. So, we're in a bit of a bind, now as a country. We have a drug available for prescription, that does lower amyloid in the brain, which is one of the pathologies that causes Alzheimer's, that's been well-documented. But whether that translates into a benefit to an individual, I think was not yet well established. And many of my colleagues share that view, the FDA didn't see it that way, and they approved the drug. Although they recognize that the data were still uncertain. And so, they're actually requiring an additional clinical trial to be done by Biogen, the owner of the drug, to verify whether lowering amyloid actually translates into a clinical benefit. There's a number of challenges to doing that. But my point is, we are making progress with developing therapies for persons living with Alzheimer's disease and Aducanumab was one example of that progress that are other drugs. Unfortunately, this decision by the FDA to allow the company to start marketing the drug and selling it is frankly premature. And so, that's the bind that we're in right now as a country based on that FDA decision.Hanh:
So, why do you think some people are confused by the moral aspects of Alzheimer's medication? We have medication that is approved, and it's not fully gone through the clinical trials with all the necessary supporting data. There's a moral issue to this,Jason:
Why are people confused?Jason:
Well, the FDA, the FDA used regulations that were written back in the Aids era that allowed what was called an accelerated approval of a drug based on its effect on a measure of the biology of the disease with still not clear evidence that the disease that evidence change translates into clinical effect. And, and that's the regulations they use. Their argument was that it's a serious disease. There's no existing therapies. All that is true, but again, without getting into insider baseball, I think many in the field feel that the claim that amyloid is a effective surrogate reduction of amyloid is just premature, and needed more study. I think the rhetoric that surrounded the morals of this decision, because it wasn't ultimately an ethical decision, by FDA, is one of they say, "Well, people are desperate and they need hope." And that's certainly been a very common set of hide bound emotions people talk about. The problem that my I have with the decision is I agree people are desperate and I agree they need hope, but I think that this decision undermines another emotion, which is trust. Mainly trust in the system for review and approval of drugs. So, I guess we're in a very difficult conversation, right now as a country around "How do we satiate the desperation and provide hope while still maintaining trust in the system?" And I think the events of the last few weeks with this FDA decision have created a very difficult set of conversations in that space.Hanh:
So now, if the efficacy of this drug isn't backed up, let's say by 40% in clinical trials, what are your thoughts on the future success as an Alzheimer's medication?Jason:
I think this particular drug is going to have a very interesting history because the company is required to do some sort of study to actually validate it's benefits. How they're going to do that's, going to be a challenge because the drugs also available for prescription. There, there are ways you can do that kind of study. It's complicated. Having said that, I think there's some concerns that, persons who are willing to be in other research studies might not drop out of those studies and instead take this drug, because it's available instead of being in a clinical trial. We'll see, in the next several months, next 12 months, we'll see what happens with those other studies. Do they lose their subjects to the drug? Do they fail to fill up with enough subjects? That'll be a very interesting, very important piece of data to gather in America. And we should learn from that and listen to it. But there are other drugs under study. The last several years actually has been very. I recognize that one of the common rhetorical points to support the approval of Aducanumab is that, there's been no new drug in the last 20 years. That's absolutely correct. I completely agree. There's no disputing that fact. But the last five years have seen a lot of progress in being able to better design and conduct studies to show whether in fact a drug works. And so, I recognize the desperation waiting 20 years, but I just felt that we were just on the edge of success here and this approval, I beg to differ with those who say it will spur innovation. I think it actually makes more innovation. And we'll see over the next 12 to 24 months, which of those two perspectives is correct?Hanh:
Mhmm. Mhmm. So now, what are some ways to improve Alzheimer's disease treatment today without using drugs like Biogen's drug, returning to old treatments, such as HRT or Donepezil?Jason:
Donepezil has been well studied and well used. And I think everyone agrees that the benefits of the Colon Esterase inhibitors are mild at best and not sustained. That's the judge really, even the NIA and program announcements, they'd issued to try and to support research, to discover new treatments. I think the Colon Esterase inhibitors, Donepezil being one of them are an important lesson for us in, we desperately want a treatment. Those were available and we really promoted them. They helped to build a scientific infrastructure to do the research that made Aducanumab, and other drugs possible. And so, that was a good thing. I, I think one of the key things that I think we ought to listen to is many of the studies that were done in the last 10, 15 years, 20 years in persons with Alzheimer's disease actually turns out probably about a third of a person's didn't have Alzheimer's disease. They didn't have the pathologies they had dementia, they had dementia, but one but they've probably didn't have the pathologies that cause Alzheimer's they had other diseases. And I think that's an important point. Because there's probably some drugs out there that we studied that failed that if we studied them again, using the tests we have now to identify whether someone actually has the pathology of Alzheimer's disease, we might actually find the drug actually is successful. So, that's an area of research that I think might need to be revisited given that we can now determine in your own brain that you have amyloid and that you have??? Cal??? The two pathologies that cause Alzheimer's, and we couldn't do that with great confidence until about five years ago.Hanh:
I'll tell you. I was excited to see all the clinical trials and the innovations. And I think what you just said about, since this FDA approved, the big issue now, I think it's trust,Jason:
because, what's going to happen later on if they approve it, another one or more data is shown there's problems or deaths resulting from this drug?Jason:
There are a lot, there are real legitimate concerns that the process FDA used to approve Aducanumab, sets a new bar for approval that if repeated could start to really introduce a set of drugs into the practice that we're really not confident are helpful. And for diseases vast and all encompassing as Alzheimer's disease is, that has huge public health consequences. Senator Manchin of West Virginia wrote a letter to President Biden where he was, is worried. In that letter he expresses his concern about this approval. And, and specifically cites this drug and the process for its approval, and pleads for a restoration of the kind of processes that used to, FDA used to use, mainly listening to its advisory boards. This is resonating in the political sphere, now.Hanh:
So, today we live and create our identities on social media sites like Facebook, LinkedIn, Instagram. It means that everything is accessible online and your identity, your vulnerability, and so forth. So, what do you think the implications for our sense of determination in a society like this?Jason:
Well, we certainly have made ourselves more interconnected in ways that are unprecedented and undermine some of our privacy, and put our identity out for all, to see. In the case, therefore, if persons living with early stages of cognitive impairment, this is interesting, because of course, what you're doing is putting out there clues and signals that, you might be developing cognitive impairment. And you're also trusting the system that it's going to respect your privacy and, and your identity as you develop cognitive impairment. So, this gets back to, so that the downside of monitoring. The downside of the system watching over you is now what was private is now potentially quite public. And so, I think there's great promise for technology to monitor people, but there's also a peril to a loss of identity, and the loss of privacy that will come and therefore a loss of identity because of the loss of privacy. So, those are real challenges we're going to need to face.Hanh:
Do you have anything else that you would like to add?Jason:
It's a journey of writing to do this book. And, there were several kind of fundamental lessons I walked away from. And I'll give you two. One is that, this, the problem of dementia, whether it's caused by Alzheimer's or Lewy Body disease or Frontal Temporal Lobar disease, or vascular disease, the problem of dementia is a very unique problem because early and relentlessly, what dementia means is you're losing your ability to self-determine your life. And that's a cherished value, but hard won and hard fought value that we only really universally enjoyed until the mid of the 20th century. So, in that sense, this is a very modern problem and reflecting a very important modern value naming the ability to self-determine your life. But related to that is I think dementia reveals how we're interconnected. This isn't some sense of disease of humanity, and it forces us to recognize, "Yes, we're losing our ability to self-determine.", but it reveals how interconnected we are when we are self-determining our lives. And so, I kind of have a cautious optimism that we can see this as a humanitarian problem and tackle it as one. We're not gonna drug our way out of each and every single disease that causes dementia. Think about cancer, we've made great progress in cancer. Some cancers are curable. They're certainly treatable, but people still do die of cancer or suffer great disability. So, I think we have to have that kind of attitude around this problem of dementia caused by Alzheimer's, and other diseases. We will make great progress, but we have to see it as not simply something that will be solved by drugs, but drugs will be part of the equation, but they're not going to be the entire solution. And if we can do that, I think we can learn to live well with dementia. I'm not trying to say it will be fun. All disease is bad, but I think we can learn how to live well with it.Hanh:
Great. Now, where can listeners find you and find your book?Jason:
Listeners can learn more about me by visiting my website, JasonKarlawish.com. And my book, "The Problem of Alzheimer's, How Science Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do", is available basically wherever you can get books. There's the only online sites IndiBound, Barnes and Noble, Amazon, et cetera. And then stores. I've popped into a few Barnes and Nobles. I was in New York over the weekend, Manhattan and I walked into Barns and they had a bunch of copies. I signed them. So, if you're on Barnes and Noble on Fifth Avenue, you can pick up a signed copy. It's available as an eBook. In addition to hardback, and a really nice audio book as well. A very good actor read it. And I think he did a great job.Hanh:
Great. Great. So, I'll make sure to include the links on the show notes as well.Jason:
Thank you, so much.Hanh:
All right. Take care.