tv Dr. Jason Karlawish The Problem of Alzheimers CSPAN April 19, 2021 6:05am-7:06am EDT
writing about bioethics and aging in the neurosciences. previous works include the novel open wound and jason has written essays for "the new york times", "washington post" the hill and the philadelphia inquirer. as well as hundreds of research articles professor of medicine health policy neurology had the university of pennsylvania and codirector of the ten memory center where he cares for patients he lives in philadelphia. today's talk is being recorded for broadcast at a later date. you don't have to worry about muting yourself. we expect to have time after hours to take questions from the online audience.
please use q&a to suggest questions we will bring them later on in the presentation. so my e-book copy was picked up shortly after it was released last month it is a great example of science communication in the same class of books that it effectively and describes complex scientific principles and problems. and skillfully weaves in the humanistic and social context. it sparked questions for me and i will take my prerogative as moderator. thank you for joining us. >> it's a pleasure to be here
i regret we cannot be live in person on campus but to be here at the university of pennsylvania. host: i'm looking forward to the day when we can get back to me be doing a panel of authors who have written and researched about alzheimer's. that would be a tremendous opportunity. my opening question is basic. alzheimer's disease, dementia, what is the difference? can you clarify the differences of the conditions and why is that important clinically and scientifically? >> perhaps the opening line of the book is a family member asking me the difference between alzheimer's and dementia. very understandable. simply put dementia describes
progressive cognitive impairment, concentration, causg disability. that's the key thing. so thinking of this disorder as a disability. the larger point with the whole first part of the book is about the transformation and what we think of alzheimer's. for much of the 20th century you had to have dementia to have the physician say what is the cause and what disease is causing this? of course the most common disease is alzheimer's. now you don't have to have
dementia to have alzheimer's. it's now possible to diagnosed with alzheimer's if you do not have dementia. i talk about biomarkers of the disease. when we put that together it allows the diagnosis. host: that is a big part of the story of discovery and progress. and the disease has been redefined using biomarkers . . . .
and it seems much more to integrate a diagnosis of diabetes or cardiovascular disease into my sort of identity and in a way that is very different with alzheimer's. >> and indeed, in your remark it is the crux of the issue it's about integrating a disease into the identity that is a physical disease versus alzheimer's, and it's about identity because fundamentally, and one of the sort of revelations that i arrived at and working on this book is not just the scientific
advances but the cultural transformations that let it become a disease and i think the central recognition is this is a disease of identity that is self-determination because early on the moment it's become symptomatic it's not so much about the physical problems that occur later in the disease, troubles with bathing, dressing, grooming. but later on for much of the disease the problems around self-determination and a person is just a little less able in the beginning to live as he or she wants to live, you know, a little less able to organize a trip or plan a complicated meal or whatever in the beginning. aspects that are part of the self-determination. as it progresses it shifts harder and harder away if you will or more and more at the ability to exercise the self-determination so one of the reasons i wrote the book as it is a disease about autonomy and ethics in some sense if we didn't have a widely accepted
ethic of respect for autonomy all adults should enjoy it would be hard to see alzheimer's disease fully as a disease until there are more dramatic play in physical disabilities later in the disease so you're right it is a distinctly different disease of the neocortex because they get at the ability of our mind to fully exercise our self-determination. >> and also like many diseases, alzheimer's may be does it in another unique way that it encompasses a much broader social context. i used a lot of stories of my clinical practice research work
in the book and it wasn't just to add a little color in between them, but because at a very key point, my patients were my best teachers and one of those moments was the husband of a patient of mine who was in the midst of narrating the problems because we make a family member coming in with a patient so he's sitting there telling me what's going on, explaining everything. he didn't have nerve degeneration like his wife did, but here he was at the doctor telling them what's going on and taking the plan back home and implementing the plan and in a sense he had her disease as well and one of the things that is unique about this disease that causes dementia is the creation
of the distinct separate entity that was smashed into the patient and i chronicle in the book actually how the caregiving role is incredibly modern actually. caregivers have been around since the bible. in the book of ruth, naomi -- ruth is a daughter-in-law to naomi and cares for her mother in law but never in the old testament book does she call her mother-in-law caregiver and the word caregiver as i chronicle doesn't appear in our lexicon until about 1980 and it distinctly links to the arrival of alzheimer's disease as a recognized disease as opposed to normal aging and so we've been caring for each other since we are in them. in the cultural and social economic events that i explained that. >> is it a western a phenomena phenomena oris it a phenomena of
industrially developed nations? >> i recount in the book i would howit's a culturally done phenomenon. just as a latino in the community, the word caregiver does not exist. they have our word but in the community there isn't that recognition and across cultures, absolutely. if you don't have a recognition of the caregiver as a distinct role, what it is instead is just another part of the role of being daughter, wife, daughter-in-law and it is gendered. and it's worth i think the recognition of the distinct role of the caregiver support that they need particularly when they are living in the modern america where the modern developed world
where they are small and spread out and whatnot. so, there's no question. some of these are wrapped up in culture but if you had to pick one that is the all-encompassing and wrapped up in culture it is this disease. >> going back to my early career to care for the elderly, and this was in the late '80s was one of my patients will in the unit i worked from who was severely demented and because of the nature of his dementia is that he had the 24/7 experience that he believed he was in a bar, a pub.
he was the happiest man, a lot a lotof the sort of physical debility's that went along with his condition, he was happy and it made me think again thinking about the impact on the family unit with a sickness and illness they have the alzheimer's especially with less awareness of increasing -- >> it's often flipped. and i recount arthur kleinman as an example of that phenomena at large in this particular case where he writes that his wife feels okay. it's me that his suffering.
his wife of course had alzheimer's disease and he writes a book about that experience that came out a year ago. but yes. i mean,, all of us with a disability more or less to some degree adjust to it. that's a well described phenomena and we certainly see that in individuals with dementia. what's interesting and what makes it more mysterious is there was a neurological phenomena where it can cause a failure to recognize say the presence of a limb et cetera. it is a mix of the disability paradox and adjustment but also probably some degree of the lesion based. especially over the course of the disease than it is for the
individual. it's not just because we've not made great progress we've not made great progress in providing this support for the family members as well, and i think it is the combination that are at the root of why this became a crisis. can you sort of give us a view of that process of the sort of discovery? >> i have to tell the original title of the book by the way he was going to be called the disease of the century. and i remember there was a small
social distance to gathering last year and i said to a friend the book is coming out. he said i think we have to change the title. which actually, i'm glad i did because it got at the heart of what the book is about. and then that subtitle really follows logically from the problem of alzheimer's, so let's walk through how science, culture and politics turned a disease into a crisis and what we can do about it. that first part that fully explained it, over the course of the century i chronicle how science and culture turned a disease into a common disease and those began in the early 1900s imperial germany, the scientific events. and i will say as a spoiler alert, warning, what i
chronicled in the book is because they occurred in germany that there was an interact him of what some called the dark ages where nothing seemed to happen. and i talk in detail about what happened and basically germany fell apart. world war i and then after world war i, economic chaos, brutal nationalism, anti-semitism would combine together to shut down the spectacular progress at the time of the scientists and psychiatry and neuropathology. and it was because it was so german-based and german bound that is simply shut all of that down. so it wasn't until later the science picked up the other things with culture picked up and that gets back to my earlier remarks about the ideas of the principal with respect to autonomy. if you look at a google search on the words that are language, i love doing that, like the
historical trend of a word. if you look at the search of a word on autonomy, it is rarely used in the lexicon until 1900 and around 1900, autonomy starts to pick up and becomes much more increasingly exponentially troubling. the cultural events that occurred that i narrate in the third part of the book, the birth of alzheimer's are this rise of autonomy and as a result the changing structure of the family and the changing view that losing your autonomy with aging is natural, just the way it is. if you combine scientific advances it could be the studies of older adult brains that show there's something going on here, together with a cultural value that losing your autonomy isn't something that you would like.
it's the perfect combination to transform what is an extreme stage of aging, nothing you can do about it. that's just what happens, to transform into this prevalent disease so that is how science and culture made to the disease prevalent. the second part is why it became a crisis and there it picks up in 1980 when the activist movement gets going with a group that would become known as the alzheimer's association. and they followed and succeeded in their goal i don't think we would have a crisis. they ran smack dab in the 80s and 90s in america, namely the rise of reagan, the transformation and particularly the republican party around thee role of government in society and ronald reagan was quoted as saying the nine the scariest words in the language, i'm here from the government and i'm here to help, and from the
anti-taxation they were out to get people with alzheimer's and putting together the vision of government that wouldn't favor and expansion of social welfare programs that were necessary. and so, by about the end of the 80s, the consensus that existed for long term care began to fall apart and by the end of the '90s it had vanished. that is that the origins of why it became a crisis. >> i think that the transition from that shakespearean viewpoint of aging and where that trajectory from dependence is very sort of chartered out. but i wonder if the shift and balance between autonomy is somehow reflected in the diminished relevance of the
church. you can sort of see that it has a potential connection. one of the things that struck me in reading the research story that i think connects with this is how little respect the research had. i felt as i was reading through some of the biomarkers and innovators that they had these operations that were, you know, band-aids and seemed very poorly resourced, like very little interest, very poorly funded and poorly respected by the institutions they worked for. what were the reasons for that? >> don't quote me but it was around the 50s, the act was passed in the 70s and it poured money into cancer cancer
was recognized as a disease. it was so recent in its recognition to recognize adults with impairments has something going on we are not just going to cause natural age, normal aging instead of a disease, say you had this sort of education in the scientific community and also congress. in other words, congress had to see it as a disease and is a problem and had to fund the research. now, what's interesting and i chronicle in the book the association made a strategic decision to not pursue which was a pejorative term in itself. you don't go to congress and say i want money for copd and
diabetes. the word on the street is congress won't do that. they give nih the money and they decide how to spend it. that wasn't true. congress had done that for the national cancer act and in the early 90s with aids creating bypass budgets for the last nih to ask for how much money it would want and bypass the congressional appropriations process. it wouldn't go until finally i chronicled in great detail the work of some clever activists in the alzheimer's association who managed to get a bypass for alzheimer's disease and boost the funding. what happened since there is an enormous boost of funding since about 2011 for the alzheimer's research which has led to a growth in the field. anecdotally i remember when i started out it was so hard to
get funded. you struggled and if the research is looking to see how hard it is to get funding you know i don't want to say they follow the money but they certainly know the width of it. we are seeing now that it is possible to get funded over the last several years we are seeing more folks wanting to go to the deal. we've got culture, the failure to recognize the disease and we've got money. each of those has begun to correct. there is a wide recognition as a problem congress certainly now is allowing the dramatic increases that are needed to occur. a. >> of what we could talk more about the guidance it was amusing the work they did. >> you think about the one guy
that was working and it seems such a distant possibility. he was doing it with so little like what were his motivations. >> there is a book the olympics of the dynamics. they were just determined to figure out how to use these technologies to image. i interviewed both of them. they are still around at the university of pittsburgh during their research and they said at the beginning why do you want to do that, like imaging a garbage can, you know, and they kind of had to do it on their off hours in between the grant funded work. they started to get grants and whatnot and moving along. but their discovery transformed the field. they opened up a whole. paradigm of thinking about and seeing the
disease. it was a fascinating story. the other thing, they took and anenormous reputational risk. they don't say that because i think in the end it all worked out but it's obvious there was a moment where the experiments were not working and i remember back then people were like if it doesn't work, don't go forward and they actually ignored the mouse model results and the rest is history and a fascinating story. a. >> we are sort of now in this space where it seems like all the big news is about the trials and drugs are a pretty new possibility with alzheimer's, the big news recently was about i will mess up the spelling, but one of the drugs. the results of the studies are
still mixed and controversial. what did these recent studies say about developing the antecedents and that sort of future possibilities and what do we need to learn? >> it's funny many have said to me planning for the cause of dementia is like planning for a lottery ticket you may win and win big but the odds are you won't. having said that i think i'm realist about the possibilities of therapies for the disease meaning i think we should expect someday we will have therapy to change the natural history of the disease. i think for some patients it will be impressive and for others it will be modest at best and others it will be either intolerable or not effective because it is very heterogeneous and it's not just alzheimer's
but other diseases that cause dementia. >> having said that let's look at where we are right now as the fda is poised to potentially approve a drug that is sort of steeped in controversy because the company performed an interim analysis performing a further study but they shut the studies down and the data looked positive, it's a bit of a mess. but the bottom line from that study, even the most optimistic take on the results are that it has an effect on the trajectory of the decline. recently, eli lily issued a phase two study of a different drug, same idea and affect on the decline with a change in the rate of decline. i chronicle in the book how that
model with an antibody approach involved in other scientific risk taker who came up with this idea of going after anna lloyd's like it was a foreign invader using antibody technologies and when his first paper came out it was so groundbreaking it actually made the national news and mind you this wasn't a study done in humans that held alzheimer's it was genetically engineered mice that were engineered to produce anna lloyd and they did this experiment on them but it was so groundbreaking some investigators at the time said this field is figured out and they are going to pivot the other diseases. i chronicled in the book how the initial enthusiasm has been dampened as i described and even studies that are not steeped in controversy see this.
but again, progress certainly is occurring but i think we are in a world where we will have to learn to deal with this disease and that is another theme of the book we have to learn to live with the cognitive impairment and there's some enormous challenges. >> it's got that same sort of initial highly inflated sort of hope and aspiration trailing up into the valley of disappointment and whatever. >> i think what was called the dialogue of resistance. >> i am certainly interested in the ethics and a lot of interesting questions but i that iwould like to hear the an.
for longer periods of time in response to may be some drug therapies that are slowing but not ceasing the increasing impairment and there's a lot of great examples of therapies that are not bad but are not drug therapies. one i know that is controversial is a concept you sort of sketch daily life and this concept of loving deception and again thinking back to when i was working in healthcare and i did a stint we were very much
instructed. it is not to engage in deception and i think some of that is ethically bound and thought to be kind of a therapy in it self. what are the parameters of the deception and alzheimer's? >> i think in this chapter in the book called the world we create is the ultimate chapter about death but in the world we create it's a lot of fun writing that and that took me to some areas that i enjoyed. without following the whole thing, i came up with this idea namely that there comes a time in the course they are not homeless, they have a place you
recognize where you are and you know the people around you and there's no question they stand in the kitchen of a home of 60 years and say i want to go home or they will look at the spouse of 30 years and say we ought to get married. the question of how to respond to that as you pointed out one approach is reality orientation, take them back to reality. obviously my tone betrays us. however gently you say it. another approach go with their
reality let me make clear there are some patients that reality works what i try to bring out in that chapter is we have to be open to a third way and the third way, and i chronicle in that chapter is this idea of seeing the person living with dementia capable of creativity, so another reason to respond when are we going home, i want to go home. not with a fact that a question and i chronicled the work of a fabulous book called creative care that i described in my practice now described as a approach that kind of is an
improv where your response to someone's question or request for something is to sort of get them to create from it. so what other wedding do you like if we had a wedding who do we invite, et cetera. i'm not saying that's the way we should do it but i want to broaden the two ways of the truth where loving deception to creative care. that's one of the points i make in the book and it's not just a family member dealing with a relative that says i want to go home. it's also people saying let's build a community for people that are homeless, so the question is how you should you design a long time residential community. and you can go to communities that are designed to look like san diego in 1960. ..
point. host: so you are continuously updating the national geographic's year-by-year. >> once upon a time what you listen to and what you listen to now. host: reading those, where these examples are geographically and what we think about the population who can take advantage of these care models that are presumably quite expensive they seem designed around white people and there is a risk to that. >> that is a very good point which part of nostalgic culture do we want?
i think we can go into the idea of loving deception with nothing of love that things get more complex. so in america we don't have a system of long-term care. so if you run the adult day activity program in america i talk about what those are and the value for care you are running the program on the margin you are either dependent on medicaid funding which is miserable. for individuals that meet the poverty threshold but depending on which administration runs the v.a. there may not be a lot. and then you asked people to private pay and that is expensive. most long-term care support is
not is at the margin of surviving fiscally and they say will just charge a lot of money and have rich people. that is the tragedy. the middle class are left in this horrible lurch in america how to provide long-term care services that has been a problem since medicare was passed. >> one thing i was touched by in these descriptions. and what popped out to me because one that was incredibly enriched by participation and drama like high school musicals. you describe yourself as a physician and a writer steeped in the humanities of american
medicine. and the memory center. there is a lot of art -based programs. is that a complementary therapy? are they a primary therapy? >> for disease of autonomy and self-determination and the humanitarian problem. things like the arts of philadelphia program. these are essential. talk about identity. how do we self determine our lives to make our identity?
to say there is a moral obligation. it isn't just entertainment. it is part of the therapy. granted, the one thing i try to make clear in my writing in my book it's not that care versus cure but we can advance good therapies. if you go to a cancer center they prescribe powerful therapies that make available non- biomedical -based therapies so they can live and cope with their cancer. we should have the same attitude with dementia. host: some of that is still controversial like the complement tree services. you talk about adult daycare they are presented this is how we give relief
to caregivers. but the person with the disease seems rhetorically in second place why those services. >> spoiler alert if you read the book so to come away with a whole new perspective and let the readers come with a whole new appreciation. >> but the flipside of that that the's therapist are healing but how supported are they? how does the pen memory centers support this kind of program with the business model? is not like running out of ten medicine money. >> i got a very sad e-mail during the pandemic that one program was closing down they cannot survive fiscally during the pandemic. most and that is the case. there are very few memory centers in america. i found one in the book. most memory centers are affiliated with an academic medical center because they cross subsidize with research and philanthropy. some exist
privately but they are clinical trial operations. the goal is to see if you're eligible for trial. to test a drug. it is the indictment of our system we don't have a coherent organized system of dementia centers we could. that pandemic shows we can do telemedicine more than we thought we could despite being geographically faraway
like putting a man on the moon. it took the government to do that. >> why are they on the moon? his response as an urban black man with the space program what is in this for me? some of the innovations and priorities offer some kind of equitable population wide advantage. >> the fourth part of the book is called the humanitarian problem. if we cannot drug our way out of the problem how do we live with it? when you think about the self-determination
hypothesis with a reproduce and image of the phantom of the opera with a face covered by a mask. i guess it scares people, is that the imagery we want to create? zombie —-dash they can motivate people to lobby congress or whatever, but they have collateral damage what you are essentially saying that persons with dementia are not moral beings. we have to be very careful to cultivate that rhetoric. that's what leads us to i would rather be dead than have this disease. it's not that the disease is pleasant, but we don't want to create a rhetoric to embrace death as a treatment for
disease. you can see that simmering for advanced directives and euthanasia. >> what do we know of the subjective experience quick. >> we don't know as much as we need to. in the last chapter of the book come i feel pretty intense to think of the interior life even with advanced dementia. i and was stories from my practice of how caregivers experience of moments of lucidity. and connection despite the severity of their disabilities and problems of communication. i present the stories in order to provoke. how is it and why is it we attribute to other things
whether a human or animal? we are pretty frisky on - - frisky talking about dementia. but caregivers will tell you there are moments of connection there is still a mind there. generally i want people to think about that. it starts to broaden the approach of advanced care planning. i am very bothered by euthanasia. i can understand why they make them. i get it but if that is the cultural norm then that runs a ragged over the moral status and persons who are labeled with dementia. >> the last year or four years or ten years have shown a strongly we need to see the humanity in each other. e substances, dementia.
>> those >> you know, there's also been a little backsliding, you know, in the past year or so, you know, sort of there's been a political in the last, the political weaponnization dementia from both sides. you know that man, woman camera, tv, and on the other hand sort of, you know, the president biden, you know, those allegations. so they were used on both sides, you know, indiscriminately for a position. nown did your ontologist have a gold water rule that psychiatrists do where you can diagnose somebody from a distance? >> yes. yes. i think that the events of the presidential campaign were disturbing. where the opponents cognition
ftion turned into a political wn as you say. i was very bothered by billboards e saw bumper stickers, et cetera, and would hope that our politicians would walk back from that kind of rhetoric. let's talking policy and not go after the brain of our point. very bothersomety agree. >> how sort of has individual in societies, you know, as, you know, for us who are not sort of actively working with people of dementia every day you have built relationships with them and understand kind of, you know, the very aspect of the condition. how should civil people respond individually or on social media, you know, when dementia reviews is a flair or accusation what's our role as citizens? >>ening should take on same way
as where we take on appropriate ways to respond to intended or unintended race comments check it call it out pl absolutely. yeah should not be a punch line. >> well thank you so much for the -- >> this is marvelous i think we could go on i feel like i'm having a dinner party conversation. [laughter] thisch thing is dinner that is miss. >> i'll sending you a grub hub gift certificate and we can order in. obviously, i read a lot i read a fair amount of nonfiction this is i highly recommend the problem with alzheimer's, you know, as an interesting book whether or not that is something that, you know, is in your life or affecting your life or you think will affect your life because it's a, you know, a great --e not really a rump. [laughter] right. but it's a, you know, it's a well told lively story.
complicated, scientific medical krpghts and makes them really excessable also provocative so, you know, highly recommended five stars. ii have, and enjoyed our conversation together. and again look forward to future opportunities thank you everybody for a joining us toda. >> thank you colleagues, and others for joining ten and elsewhere it was really marvelous, thank you. >> a look now at current best selling nonfix books according to books in ann harbor michigan first on list is broken by humorist jenny lawson on personal battles with sphretion, next is grammy award-winning artist brandy memoir broken horses, after that is chatter, psychologist ethan crosses look at our so-called inner voice, then in women don't owe you pretty activist florence offers her thought on feminism what she calls the instagram generation.
and wrapping up our look at best selling books according to books is minor feelings, kathy thoughts on roadways and identity as asian american in america. some of these authors appeared on booktv.org. ♪ ♪ booktv on c-span2 every weekend with the latest nonfix books and authors. for booktv comes from these television company who is support c-span2 as a public service. >> welcome to the free library of philadelphia online my name is jason freeman producer editor here in the free libraries author office and i'm pleased to be here to introduce tonight's guest deborah. deborah ph.d. is the author of posing beauty. african-american images from the