BY PETER BOWES | LOS ANGELES | APRIL 21, 2021 | 0700 PT

There has been “spectacular” progress in recent years in the understanding and treatment of Alzheimer’s.  The progressive disease, which is the most common cause of dementia, a late-in-life decline in memory and cognitive ability, afflicts 50 million people around the world. Taking family members and other carers into account, that number increases exponentially.  The condition, for which there is currently no cure,  amounts to a modern day crisis, for all involved. In this episode of the LLAMA podcast, Dr Jason Karlawish, a gerontologist and professor of medicine and medical ethics and senior fellow of the Center for Bioethics at the University of Pennsylvania, says significant gains are being made with therapeutic treatments, but many hurdles remain.  The author of The Problem of Alzheimer’s: How Science, Culture and Politics turned a Rare Disease into a Crisis, also argues that Alzheimer’s is disease of our identity and a condition that raises fundamental, moral questions about what it means to lead a good life. 

Recorded: March 30, 2021 | Read a transcript 

Connect with Dr. Karlawish: Bio | University of Pennsylvania | Book: The Problem of Alzheimer’s:  How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It | Penn Memory Center | Twitter | Writings

Topics covered in this interview include:

• The difference between dementia and Alzheimer’s disease.
• How can dementia be distinguished from the ‘normal course of aging?”
• The work of the Penn Memory Center, with patients and their loved ones. 
• Explaining medicine in the ‘real world,’ through the stories and experiences of people.
• Why patients and caregivers are the best teachers. 
• Distinguishing between disease and disability. 
• How stigma haunts the lives of people with dementia. 
• Defining Alzheimers as once a rare disease, now a crisis. 
• The “spectacular progress in science,” dealing with Alzheimer’s. 
• “Living’ with Alzheimer’s rather than relying on drugs. 
• Why is the risk of demential declining? 
• The crisis of good quality care for Alzheimer’s patients in the U.S.
• Regular exercise and a heart healthy diet to maintain good brain health.  Red wine too? 

The Live Long and Master Aging podcast, a HealthSpan Media LLC production, shares ideas but does not offer medical advice.  If you have health concerns of any kind, or you are considering adopting a new diet or exercise regime, you should consult your doctor.

Transcript

Jason Karlawish: [00:00:03] This is a disease of our identity. It gets to the heart of some very morally and ethically charged aspects about what it means to live a good life when you’re losing your ability to determine that life yourself.

Peter Bowes: [00:00:22] Hello again, and welcome to LLAMA, the Live Long and Master Aging podcast. I’m Peter Bowes. This is where we explore the science and stories behind human longevity.

SPONSOR MESSAGE: [00:00:33] This episode is brought to you in association with JUVICELL, the all-in-one longevity supplement that contains 10 key ingredients shown to have a positive impact on healthspan as validated by scientific studies. To find out more, visit JUVICELL.com. That’s JUVICELL.com. 

Peter Bowes: [00:00:54] Alzheimer’s disease is considered by many to be a modern day crisis. We’ve talked about it before on this podcast where we try to focus on living a long and healthy life. But it is the scourge of dementia that denies that privilege of healthy ageing to so many people. And I think it’s fair to say that many of us have encountered the disease first hand, sometimes more than once, whether it’s a relative or friend who has succumbed to progressive memory loss or impaired cognition, sometimes referred to as the long goodbye because of the way that person loses all sense of who they are and who we are. So a crisis for sure. But is there cause for optimism in terms of the science and our greater understanding of Alzheimer’s compared with maybe just a few short decades ago when it was considered a rare disease? My guest is Dr. Jason Karlawish, professor of medicine and medical ethics and senior fellow of the Center for Bioethics at the University of Pennsylvania. He is also the author of the recently published book The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. Dr. Karlawish joins me from Philadelphia. Welcome to the Live Long and Master Aging podcast.

Jason Karlawish: [00:02:12] Thank you, Peter, it’s a pleasure to be on the show.

Peter Bowes: [00:02:15] Good to talk to you. I use the term Alzheimer’s and dementia in the same breath there in my introduction. Let me put to you the question that you pose in the first line of your book. What is the difference between dementia and Alzheimer’s?

Jason Karlawish: [00:02:30] It is the question that opens the book and it often opens up many a clinical encounter when we get to what the diagnosis is. Simply put, dementia describes progressive disabling cognitive problems. So a person prior had no cognitive problems, but now has developed difficulties with memory, attention, multitasking, and those cognitive problems are causing disability. And that’s really the key word in the words, someone needs to help the person prepare a meal, negotiate transportation from home to somewhere else, pay a bill, disabling cognitive impairments. Now, there are many different diseases that cause progressive disabling cognitive impairments. One of the most common diseases is Alzheimer’s disease. But it’s not the only disease that causes dementia. Parkinson’s disease can cause dementia. Lewy body disease causes dementia. HIV infection, if left untreated, ultimately can cause a dementia, in the 19th century and prior untreated syphilis, tertiary syphilis caused to dementia. So dementia, disabling cognitive impairments, Alzheimer’s, one of but not the only cause of dementia.

Peter Bowes: [00:03:43] And is there an element of dementia, if indeed that is an appropriate phrase, but is there a phrase it like that, an element of dementia in the normal course of aging?

Jason Karlawish: [00:03:56] The answer is it depends on how you define what you think normal aging is. And in the book I recount, for example, how you know, until the mid of the really the last quarter of the 20th century, disabling cognitive impairments in an older adult was considered senility caused by aging. It was not considered caused by a disease. And so it was normalized as this is just what happens when you get older because of extreme aging, a pivotal set of events would occur in the last quarter of the 20th century. That would recast that way of seeing what is a normal aging and what is disease. Although, as I point out in the book, that work already started in the early 20th century, but are a host of bizarre events occurred from the early 20th century to the last quarter of the 20th century that had it all forgotten. So now we do not think of dementia as normal aging because of several reasons, one of which is the ability to see that there is clearly pathology going on in the brain. But there are also cultural transformations that allow us to recast senility as a disease, and we can certainly talk more about that.

Peter Bowes: [00:05:17] Yeah, exactly. Let’s talk about that, let’s delve into some of the issues that you raise in your book. Before we do that, just tell me a little bit about yourself and your career today. You’re a physician

Jason Karlawish: [00:05:27] Yeah,

Peter Bowes: [00:05:27] And also quite a prolific writer.

Jason Karlawish: [00:05:30] Well, yeah, I consider myself a physician and writer, and I think the one feeds the other. It’s it’s truly a harmony or a marriage. In some sense, though not everything I write about it comes from is about medicine. But, yes, I’m a I’m a geriatrician. I trained in internal medicine. And then I did additional training in geriatric medicine, an unusual field, admittedly. And early on in my career, I made dementia my focus and came to Pennsylvania as my first faculty position. And I’m still here. I help run the pen memory center where I am talking to you right now from right now. I saw a patient earlier today, and otherwise I divide my time between that and a host of different research projects as well as writing projects. And this book, The Problem of Alzheimer’s is my second book. My first book was actually a novel called Open Wound The Tragic Obsession of Dr. William Beaumont based on true facts from the early 19th century about a physician.

Peter Bowes: [00:06:27] So you mentioned you’re at the Penn Memory Center right now. Just tell me a little bit more about the work of the center. You see patients there. What is a typical day for you?

Jason Karlawish: [00:06:35] Typical day depends on the day of the week, but for clinical day, which is Friday, I see patients at the Memory Center for Diagnosis and also for follow up care. And, you know, a visit to a memory center as I recount in the book is different than a visit to most adult doctors. Why is it different? Well, you know, to begin with, we just don’t see the person with the problem, the memory problem, the cognitive problem. But we really encourage them to bring in someone else, a friend, a family member, spouse, adult child who will really serve in at least one. And soon, perhaps two roles. The role of an informant we call it’s a quirky term. But, you know, give us some history. What have you noticed? And oftentimes that individual also starts to walk into the role of of what we call the caregiver, namely, that they will start to help the person who has disabling cognitive impairments, accommodate their disabilities. Those visits can take about an hour or so, at least the new patient visits. We spend a lot of time to figure out what’s going on and and what needs to be done.

Peter Bowes: [00:07:36] And you’ve clearly drawn from many of those experiences in writing your book,

Jason Karlawish: [00:07:41] Yeah.

Peter Bowes: [00:07:41] Because it is it is a beautifully written book and it is a book that that melds a lot of personal stories, personal stories, obviously, of your patients and their families and people you’ve got to know well and and your own experiences, your own direct experiences over the years. And the way that you meld those stories with the science is in some ways what I try to do with this podcast, and that is talk about current science and developments. But I suppose make it real by talking to to people who’ve experienced situations that may be reflected

Jason Karlawish: [00:08:13] Yeah.

Peter Bowes: [00:08:14] In the science. Why was it important or why do you feel I assume that you do feel it’s important to do that in terms of explaining this disease to people?

Jason Karlawish: [00:08:23] Well, you know, medicine is about being able to help people live in the real world, so, you know, our stories of illness are the stories of disease. That’s how we figure out what diseases. I mean, my most powerful question to figure out what’s wrong with someone to make a diagnosis is is is a question, actually, and it’s not a test, et cetera. What’s a typical day? And it’s essentially a narrative based question. I find out vivid details about what they can and can’t do, and that really helps me figure out what’s wrong with them and how best to care for them. You know, the foundation of medicine is a is a good, careful history, a story of what’s going on with this individual to then arrive at a diagnosis, but also a treatment plan. So, you know, narrative is essential to good medical practice, never mind good practice of medicine dedicated to diagnosing cognitive problems, just the good practice of medicine in general. So I think story is essential to good medicine. The reciprocal of that or the other side of that is, you know, my patients and their family members, as I recount in this book, they’re just not in there to add a little color. They’ve been some of my best teachers. You know, I recount in the book in the last part of the book, a caregiver who, midway through his narrative of his wife’s problems, suddenly blurts out, I have Alzheimer’s disease. And what he’s saying isn’t that he has cognitive problems that are disabling. But what he’s saying is, is all this work I have to do to come in here and tell you what’s going on and, you know, find out what we need to do and then take her back home and, you know, take care of her. Essentially, I’ve got this disease, you know, and that’s one of many, I think, brilliant examples of, you know, your patients are your best teachers. You just have to learn how to listen or as it were, your caregivers are the best teachers to.

Peter Bowes: [00:10:11] Yeah, I think that’s interesting and just defining what the disease is and its implications and I take away that one of the issues for many people is, is this a disease or is it a disability? Are some people in denial that it’s a progressive disease as opposed to something that they’re just struggling with in the moment?

Jason Karlawish: [00:10:31] Well, a couple points there to unpack, you know, I’m of the view that persons living with dementia do have a disease causing it. Sometimes we can’t quite figure out what that disease is, but there’s disease there. I’m also of the view that and I’ve used it already that persons with dementia are disabled. That is to say that they have a disability. And the reason why I think it’s important to frame it as a disability is because it begs a societal obligation to provide reasonable accommodations for that disability. And I often find people a little sort of I never thought of it that way, meaning they will say, well, you know, I’ve had spinal injury or whatever physical disability. Well, that’s a disability. And you get a curb cut or you get a cane or whatever, a scooter. But, you know, I never thought of dementia as a disability. And I think that’s very helpful because it shows the importance of the caregiver. They’re just not doing tasks right. They’re an extension of the mind of the person with dementia. They fill in where they leave off so that the person once again can fully self determine their life. But there’s an additional point that you made that I think is really quite important, which is people accommodate to disability. And we see this across a variety of disabilities, whether they’re physical causes, physical, cognitive or some combination of both. They figure out how to sort of feel wholly a person again. Now, there’s a bit of a complexity with some of the diseases that cause dementia, because there certainly are clinically some patients who will not even see that they have cognitive problems, like, I’m fine, I don’t know why I’m here. I don’t understand. And there is a neurologic phenomenon known as anosognosia, lack of awareness. You know, they don’t recognise in some strokes, for example, that they have a disability with with motion, for example. And we see in anosognosia as well in persons living with dementia, whether it’s caused by Alzheimer’s or some of the other disorders. But we also see persons who are very aware of their cognitive problems, but they’ve learned to adjust to them and they sort of say, what I’m doing, OK, and I feel OK. And I think we have to sort of respect that is the way we accommodate the disabilities.

Peter Bowes: [00:12:42] And there’s also the stigma associated

Jason Karlawish: [00:12:44] Yeah.

Peter Bowes: [00:12:45] with diseases of these kinds and and also and I’ve noticed this myself, the way in which people may be family members or or others who will how they will refer to someone who is suffering from dementia. And all of a sudden it becomes, oh, they behave like this, or they do this as if grouping sufferers together rather than treating them as individuals. And suddenly the use of a person’s name in a very personal sense seems to be forgotten. And it’s an almost distancing of yourself

Jason Karlawish: [00:13:21] Yeah.

Peter Bowes: [00:13:21] from the person who is suffering from the disease.

Jason Karlawish: [00:13:23] Well, you know, stigma haunts dementia, stigma haunts the lives of persons with Alzheimer’s, and it’s woven into the book front and center. You know, I quote how Walter Annenberg, former ambassador to the United Kingdom under the Reagan administration, was quoted in The New York Times about his former friend, Ronald Reagan. And I say former friend because he said, I prefer to remember him as a vigorous fellow, not the way he is now. And so I don’t go see him. And so what Walter Annenberg was saying was, I’m going to stay away from my friend Ronald Reagan, who has dementia. And of course, that meant staying away from Nancy Reagan as well, Ronald Reagan’s wife. And it was a very explicit, just plain statement of distancing from someone with dementia, because I don’t want to see him. I don’t want to see their disabilities. I don’t want to see them. Now, you know, I also recount how a son, very wealthy son, built a whole set institute. And part of the architectural design of this neurological institute was the waiting room would not allow anyone to see anyone else. Everyone has their own personal waiting room. So you didn’t have to see another patient. And, you know, I think stigmas haunt the lives of persons with dementia because they will say, you know, friends stay away, family stays away. Their caregivers talk about how friends and family stay away. And I think, you know, you can’t just wish stigma away. You have to confront it as a cultural phenomena. And I think, you know, I recount how Susan Sontag in her book Illness as a Metaphor, notes how cancers, stigmas, you know, were created because you had this large, vast, complicated disease with uncertain causation and poorly understood treatments. Well, that describes Alzheimer’s disease as well. And yet, you know, while treatment will help to sort of reduce stigma, we can work on our language. So, for example, you’ll notice in my remarks with you, I’m not saying, well, the demented and, you know, my demented patients, I keep on saying persons living with dementia. And and it’s a very deliberate act on my part to distinguish the disease and its disabilities from the person who has those disabilities. And that’s a change for me. If you interviewed me, say, six years ago, I’d be saying demented. You know, I’d be saying, oh, you. Well, amongst my demented patients, this is what we do. And now I just don’t talk that way. And that represents a turning in my way of thinking of them as persons. Yeah.

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Peter Bowes: [00:16:33] And now let’s return to my conversation with Dr. Jason Karlawish. So I think we’ve touched on this a little bit. The subtitle of your book is How Science, Culture and Politics Turned a Rare Disease…

Jason Karlawish: [00:16:44] Mm hmm.

Peter Bowes: [00:16:44] …Into a Crisis. What is the the big point that you’re trying to make their.

Jason Karlawish: [00:16:48] Yeah, the big point that I’m trying to make in that subtitle is science turned a rare disease into a common disease. Science and culture politics turned it into a crisis. So several events in the 20th century transformed what we thought was a rare disease, Alzheimer’s, only seen in individuals under the ages of 60 and therefore rare scientific and cultural advances transformed that into a common disease. And I talked about that earlier already. How we begin to rethink senile older adults didn’t have senility. They had dementia and that dementia was not caused by extreme aging, but caused by a disease, Alzheimer’s. And I tell the story of the scientific and cultural advances that led to that. But what made it a crisis was politics. What made it a crisis was the failure of political institutions to do the things that needed to be done to care for those persons living with dementia and their caregivers. And I met that all out across the first two parts of the book.

Peter Bowes: [00:17:53] Interesting. So let’s talk about and I’m sure these are the three areas that you get most questions about, and that is the diagnosis, the treatment and a potential cure for Alzheimer’s and what the current science is telling us about those three individual pillars. So, first of all, diagnosis, in what way are we better off now than we were? And we’ve talked about how it was a few decades ago. How does the science benefit us now in terms of the diagnosis of this condition?

Jason Karlawish: [00:18:22] Yeah, our ability to diagnose the disease is a story of spectacular progress in science, it really is. Namely, I recount in the first part of the book, Alzheimer’s Unbound. How you know, beginning at the beginning, at the beginning of the 21st century, 2000, you had to be diagnosed with dementia, disabling cognitive impairments to then have the physicians say, well, I think the most likely cause of your dementia is Alzheimer’s because of certain characteristics in your history and your exam. But I’m only going to know that your dementia is caused by Alzheimer’s when you die, because when you die, I will then be able to have the neuropathologist look at your brain and say, oh, the pathologies of Alzheimer’s are visible here. It’s a sort of a Gothic horror story. I can’t really tell you what’s causing your dementia until you die. So you will never know. Around the turn of the century, two events occurred that revolutionized the way we think about what what is Alzheimer’s and who has it. And in the first part of the book, Alzheimer’s Unbound, I narrate these two events. They occurred in very specific times and places. The one was in the Midwest, in the small city of Rochester, Minnesota, where a group of young investigators, led by a senior researcher, essentially did a study that uncovered this idea of a risk state for developing dementia called mild cognitive impairment. And the second event is to collaborative researchers in Pittsburgh who teamed up and were determined to figure out a way to use PET scan technologies to visualize amyloid in a living human. In other words, not wait till you die to see it, but to see it using a PET scan. And when you put those two events together, mild cognitive impairment and a PET scan that visualizes amyloid, you suddenly disrupted that whole architecture that I told you about that I had to say you have dementia to say you have Alzheimer’s, because as I recount in the book, what that those scientific advances have allowed us to do is label someone with Alzheimer’s who does not have dementia, but only has mild cognitive impairment. And of course, where the field now is going is can we label people with Alzheimer’s disease, regardless of whether they have cognitive impairment? That is to say, visualize the pathologies in someone who is doing a podcast and, you know, otherwise functional, but has amyloid and tau and evidence of neurodegeneration. And that’s, of course, where the field would like to go for early diagnosis and therefore, hopefully, of course, early intervention. And that’s a very exciting field and it sort of advances that have unfolded over the last decade or two at most.

Peter Bowes: [00:21:15] Exactly. And does this move us potentially towards a time when perhaps we can all be tested without showing any symptoms at all for our potential to develop these conditions?

Jason Karlawish: [00:21:27] Yeah, so so it does and a recount in the book have sort of, you know, the vision of the future that’s sort of unfolding now. And I recount the studies and the work that I was part of in some of those studies is to do tests, biomarker tests that label someone is on the trajectory of developing down the road dementia and of course, intervening with a drug to try and change that natural history. It’s funny when you talk to the Alzheimer’s investigators, they’re all jealous of the cardiologists, you know, because they look at your cardiology colleagues, all their various tests who can diagnose heart disease when you’re otherwise doing fine. But, you know, the cholesterol result, the blood pressure result, the the the calcium scan, CAT scan of the chest, all will add up to, oh, you know, you need to be on a statin and an antihypertensive, etc.. You know, the Alzheimer’s field talks about that. Like that’s where we want to go. You know, of course, there’s something I think morally, ethically, socially, quite different about being told, you know, you might develop heart disease down the road. So take these treatments versus, you know, you might develop dementia down the road. So take these treatments. I would argue the latter is pretty high octane news for many of us, given how this is a disease that gets right at your identity, if you will.

Peter Bowes: [00:22:47] Yeah, exactly, and as science develops, then I wonder if is going to come a time when we’re obviously all very well aware of the benefits of eating a good diet, of taking plenty of exercise, but when we will better understand what we need to do in terms of our lifestyles to potentially prevent a disease like this.

Jason Karlawish: [00:23:08] Yeah, so two points, I’ll just state this plainly and then get to the second of what I think we should look forward to a future where we can change the natural history of Alzheimer’s disease and other diseases that cause dementia. That is to say, slow the curve. For some, that may mean you never develop disabling cognitive impairments. For others, it may mean it didn’t make a difference. And they occurred. And, you know, for probably most it’ll mean that, you know, you didn’t get as sick as quickly as you could have or would have, but for these efforts. So I think we’re at a point I make in the book is we are not going to drug our way out of these problems. We’re going to have to learn how to live with Alzheimer’s disease, but I think live with it better than we have in the past. The second point I want to make is right now in the world, in America and the world, we don’t have a treatment that at the Memory Center, for example, I can type out a prescription and say with confidence, this will slow down the progress, the progression of your disease. We don’t there are some drugs under study. I’m sure we’ll talk about that might do that. But having said that, there’s very good data gathered from multiple well done studies for the last three or four decades that have a consistent finding across those studies, which is that the risk of developing dementia has been declining over the last three or four decades. There’s still plenty of people with dementia because it’s so related to age and there’s so many more people living into their 70s and 80s. But we don’t see expected numbers that we thought we would see because the risk is declining. And so they say, well, now, wait a minute, you just told me there’s no effective treatment and yet the risk of getting dementia has been declining. So what’s going on here is there’s something wrong with measurement of the science. And I think the science is both is correct. And when you look at those studies that show the risk of dementia is declining, what you see is very consistent answers. And they start basically in childhood access to good education, at least through a secondary school, to the 12 years of education has been shown to consistently reduce the likelihood of developing dementia and then access an opportunity that follow from that as well. Namely, access to good health care, particularly cardiovascular care over the life course has consistently been shown to reduce the risk of dementia. So there are real things that we can do right now in America to reduce our risk. We just have to have the political will to do them.

Peter Bowes: [00:25:30] Yeah, that’s positive, so let’s talk about treatment and you’ve touched on it already, you talked of developments with drugs, which is very significant. Of course, under the the umbrella term treatment comes caring as well, which

Jason Karlawish: [00:25:42] Right.

Peter Bowes: [00:25:43] Perhaps equally as important to potential drug treatments. So where are we? First, let’s talk about drugs in terms of the most recent developments.

Jason Karlawish: [00:25:52] Well, you know, I recount a lot, a lot happened around the turn of the century and at the turn of the 21st century, there were also some rather spectacular breakthroughs with approaches to targeting amyloid. One of the pathologies seen in Alzheimer’s that initially were really exciting, particularly if you were a transgenic mouse manufacturer to develop Alzheimer’s. I mean, we really cleared the Alzheimer’s amyloid out of the mice and they did better in the water maze tests. And this these drugs were rapidly translated into humans and tested in humans. And there is a recount. We didn’t do as well as the mice. And over the last two decades, where are we now? We have the ability to manipulate amyloid levels in the brain of a human. We can do that. And we’re beginning now in our studies to see that there may be an effect on the trajectory of decline. The studies that I have most recently been presented and some of the FDA now for review do not show a reversal. They do not show a flattening, if you will, over the course of the disease. But they show a separation, if you will, between those on drug versus not on drug, such that, again, it’s sort of like, you know, bending the curve of decline as opposed to simply stopping it. And that’s probably where we will be assuming one of these treatments is shown actually to be effective. After all the data are looked at so slow but not halt now might down the road we develop more effective treatments and innovate. Absolutely. But I think that’s that’s on the table. So progress and therapeutics absolutely has occurred. Still certainly more work to do in that space, though.

Peter Bowes: [00:27:30] And in terms of caring for loved ones with dementia, there’s a film out at the moment, The Father starring Sir Anthony Hopkins. I don’t know whether you’ve seen it or not, but addresses head on the issues and the problems associated with someone who is very clearly exhibiting the progressive decline in terms of the cognitive abilities.

Jason Karlawish: [00:27:50] Exactly, and that’s where the crisis begins. So the crisis, as especially in America, is that we have not set up the kind of health care system that we need to care for persons living with dementia and their family members. And I recount how, you know, when the Alzheimer’s advocacy movement started essentially at the end of the 70s, by 1980, when the organization that would come to be called the Alzheimer’s Association was founded, you know, they had several agendas, raise awareness and research for a cure and create a system of long term care services and supports. I would argue that they certainly have succeeded on the first two, but no fault to them. They never achieved that third goal of a system of long term care services and supports. So as it was then, it still is now that a family confronting how are we going to care for our relative who’s developing disabilities from cognitive impairment, is faced with figuring it out on your own, an indifferent health care system both for really getting a clear diagnosis, but worse and indifferent long term care, social services and support system that is not routinely available. A patchwork at best. You know, we have Medicare to make sure you get the best of medical care in America, but we don’t have an equivalent social insurance program to assure that you get long term care services and supports. We have a safety net in the form of Medicaid if you’re poor enough and meet poverty threshold. But there that care is rationed. People wait months, if not years to get it. And, you know, it is the quality of it is only marginal because it’s rationed and such. So America has not been able to successfully arrive at a political consensus to create a system of long term care services and supports to reduce the risk of the hazards of being a caregiver, as well as being a person with dementia. And that’s a tragic story which leads us to the crisis we have today in terms of the lack of good quality care.

Peter Bowes: [00:29:50] Yeah, and I think that is probably reflected in countries around the world, we’ve got a global audience for this and there are I know there are similar issues in other countries.

Jason Karlawish: [00:29:59] Yes, I will say I don’t want to try to make it sound like all unicorns and rainbows in Germany, in the Netherlands, but, you know, I would hold out that those are two countries where, you know, they mustered the political will to set up a system of long term care services and supports in the Netherlands after diagnosis of dementia, you have mandatory access to a care manager to help organize a care plan. You know, in Germany, there’s a long term care social insurance program available to all, regardless of whether it’s dementia or whatever the cause of disability is, it’s paid out of a payroll tax that all all citizens, all Germans pay into. So I think other nations have been a little bit more thoughtful around this and than we have here in the States.

Peter Bowes: [00:30:44] And I think more generally, leaving aside the structural basis of how health care systems are set up, I think one important issue is, is purely education. And perhaps this is where conversations like this come in in terms of helping people understand the condition, because I think that’s a big part of the the problems that people have with caring is simply not understanding what they’re dealing with and what their loved one is doing and what the progression is likely to be so that they can the carers can prepare themselves for the next stage and for the next stage and for the next stage.

Jason Karlawish: [00:31:16] Yeah, I remember, you know, what are the most common questions asked in the memory center in addition to what’s the difference between Alzheimer’s disease and dementia? Another of the most common questions is what to expect in the future. And I think families breathed a sigh of relief when you sit down and sort of explain, here’s where we are now in terms of stage and here in the coming months, years is the things to look out for, therefore how to plan, because I think it’s the case oftentimes when people hear the word Alzheimer’s, you know, they just immediately go to the sort of advanced stage of the disease and they think, well, know the person will be unable to recognize me, bathe, dress, groom, feed and toilet and not able to live in the home, you know, next year where, you know, for many patients, of course, that’s just simply not the case, you know, because they’re diagnosed years ahead of those events, if those events are going to happen at all. And again, you know, I think that’s the health care systems responsibility to provide that kind of education to patients and especially to family members. And again, in many health care systems, that’s scattered at best. You know, that’s sort of the diagnosis analysis. You know, you get your diagnosis and then you’re on your own, you know, and that’s just unacceptable.

Peter Bowes: [00:32:28] As I mentioned earlier, you include many, many stories in your book, personal stories, very sad stories in many cases. What would you like your readers to take away from this book if there’s one thought, if there’s one impact that you would like to have on people as they read this and and digest and assimilate some of these really heart-wrenching stories, what would it be?

Jason Karlawish: [00:32:51] Yeah, this is a disease of our autonomy. This is a disease of our identity. It is a morally challenging disease both for the persons who have it and for the persons who care for them. It seems ordinary and quotidian in terms of the problems that people have, but it gets to the heart of some very morally and ethically charged aspects about what it means to live a good life when you’re losing your ability to determine that life yourself. That, I think, is a sort of awareness point. I want to make the other awareness raising point I want to make. I know you asked for one. I’ll give you two is it didn’t have to be this way. You know, when I look at the events that unfolded beginning in the early 20th century to now, there were so many opportunities to not be in the crisis that we’re in now. And yet sometimes unwittingly, sometimes wittingly, we allowed ourselves to be where we are. And, you know, I recount in the book, you know, the events in early 20th century Germany, which essentially shut down the progress that was occurring there. And fast forward, of course, have already married how particularly the State’s politics of welfare and other cultural and political events have thwarted progress.

Peter Bowes: [00:33:59] And I am curious, because this is a podcast about human longevity, we talk about the interventions that we can bring to ourselves, lifestyle interventions, whether it’s doing more exercise, eating a more appropriate diet with the goal of living longer and better. It’s not about living forever, but it’s just about having a good healthspan and optimizing the number of healthy years that we have. I’m just curious, with your experience dealing with dementia, how you live your life, perhaps with your own longevity in mind? We all think about

Jason Karlawish: [00:34:32] Yeah,

Peter Bowes: [00:34:32] What it’s

Jason Karlawish: [00:34:32] It’s.

Peter Bowes: [00:34:32] Going to be like in a few decades time. Are there lessons that you personally have learned that you apply to yourself?

Jason Karlawish: [00:34:39] Yes, I’m very mindful about stress. Why am I experiencing it? Do the causes of it and how can I address those causes? So I pay very great attention. For example, why am I waking up at 2:00 in the morning and what do I need to do to to avoid that early morning awakening from whatever anxiety I have?

Peter Bowes: [00:34:57] And do you have a solution to that? Like a lot of us do that and wonder why, and then it happens again the next day and the next

Jason Karlawish: [00:35:02] Yeah,

Peter Bowes: [00:35:02] Day.

Jason Karlawish: [00:35:03] Well, you know, I’m very mindful about, you know, what are the interactions I’m having. And one of the decisions I’ve made have been causing me stress and distress. I when I’m done with this conversation, I’ll be biking to downtown Philadelphia, not driving, you know, and later today, I might end up at the there’s a Kroc Center I go to which has a marvelous Olympic pool. So I’ve made exercise sort of a very just sort of it just routine part of my life. And and, you know, I’m mindful of the diet that’s heart healthy. I, you know, really pay attention to, you know, what I put, you know, what’s a heart healthy diet. And those are just part of my sort of good habits to maintain good brain health. And I certainly I’m a subscriber as well to the red wine hypothesis that regular consumption of red wine reduces the risk of dementia.

Peter Bowes: [00:35:57] Yeah, and that was a good point you made there in terms of brain health, because I think a lot of people still think that cycling, swimming, physical exercise might benefit our muscles. But it’s much broader than that, isn’t it?

Jason Karlawish: [00:36:09] Absolutely, the data there are very compelling.

Peter Bowes: [00:36:11] Well, look, I really found your book fascinating, it was enthralling to use the jargon, it’s a page turner and I think it’s because of the way that you’ve written it, because

Jason Karlawish: [00:36:19] Well, thank you Peter 

Peter Bowes: [00:36:19] I think it’s the way you meld the stories and very interesting science and politics as well, which, as we’ve explored in this interview, is, I think, crucially important going ahead. Dr. Jason Karlawish, thank you very much indeed.

Jason Karlawish: [00:36:30] Thank you, Peter it was a marvelous… I really appreciate the opportunity.

Peter Bowes: [00:36:33] Yeah, very interesting, and I will put a link in the show notes for this episode, The Live Long and Master Aging Website, LLAMApodcast.com that’s LLAMApodcast.com The Problem of Alzheimer’s is also available as an audio book from Audible. And I’m pleased to say this podcast is now also on that platform. If you have an account, just go to Audible.com search for Live Long and Master Aging and you will find each and every one of our more than 140 episodes there. Free of charge for your enjoyment. Go for a walk and listen to us. Wherever you find us. Take care. And thank you so much for listening.