Charter communications supports cspan2 is a public service. Good afternoon thanks for joining us today with university of pennsylvania others. My name is richard, and the library for the university of pennsylvania my race. Im happy to have the opportunity to talk to jason about his new book the problem of alzheimers, how science, culture and politics turned a rare disease into a crisis and what we can do about it. A physician and writer who researches and writes about issues in bioethics, aging and neural sciences. Previous works include open one, tragic possession of doctor william and jason is written for the new york times, washington post,ew forbes, and step news as well as hundreds of Research Articles in the most influential journals. Professor of medical policy and neurology at the university of pennsylvania and coat director of a Memory Center where he cares for patients. Lives and thought of you. Todays talk is being recorded. Since its a webinar, you dont have to worry about muting yourself or going off camera and we expect to have time after our dialogue to take questions from todays onlinens audience so please use the q and a feature to suggest questions and i will keep an eye on them and bring them in later in the presentation. I pickedte up my copy. We describe complex medical problems and audiences and weaving broader humanistic social context. It sparks a lot of questions for me as i was reading it and i will take my product prerogative. Thank you for joining us. I regret we cant see each other live on campus but what a thrill to do this event at the university of pennsylvania. Thank you and im looking forward to the day we can get back we talked about maybe doing a panel of authors of alzheimers, that would be a tremendous opportunity. But my question today is basic and fundamental, alzheimers disease and dementia, what is the difference . Can you briefly speak of the positions . Why is it important scientifically . Perhaps the opening line of the book of Family Member asking the difference between alzheimers and dementia, a common question in understandable. Dementia describes progressive ngCognitive Impairment, concentration and causing disability and other keeping. I talked about in the book is a disability, the larger piece there in the first part of the book, the first part of the book is about the transformation the way we think about alzheimers in the bottom line when i trained and for much of the 20th century you had to have dementia to have the physician sites what is the cause . The most common disease was alzheimers so no dimension. As a chronicle in the book, although i was 2 unbound, that began to change. No longer have to have dementia to have alzheimers. Its possible with alzheimers who does not have dementia, we talk aboutos cognitive imperatis and biomarkers and when you put it together is this diagnosis before dementia. So thats a big part of the story of discovery and progress in the disease has been redefined. Be defined as a biological diagnosis following histories of other diseases like cardiovascular disease or you dont have to have a heart heart attack to be diagnosed, it said various markers, the levels will label you as being a patient even though youre not suffering get your labeled encountered and treated thats whats happening in the oldtimers space is a talk about in the book. And that labeling seems different in alzheimers because it is bundled up in the x potential crisis, if i am diagnosis by diabetic, its something i have to address with lifestyle and medication but it seems more diagnosis of diabetes and cardiovascular disease into my identity in a way thats different with alzheimers. And in your remark is the crux of the issue, theres something about integrating disease identity, the physical disease versus oldtimers and its about identity because fundamentally, one of the revelations i arrived at, not just the scientific advancement the cultural transformation the left to become a disease it is think the recognition is these disease of identity, the disease itself of determination because early on the moment it becomes symptomatic, its not about the physical problem that occurs later in the disease but early on in thess course of the diseae problems around selfdetermination, a person is a little less able in the beginning to live as he or she wants to live. A little less able to organize a trip or plan a collocated meal in the beginning, aspects part of our selfdetermination. As the disease progresses harder and harder away or more and more away the ability so a revelation on the book, its a disease of autonomy. We did have widely accepted ethic of respect for autonomy all adults should enjoy, it be hard to see alzheimers fully disease until there is the dramatic behavior problems and physical disabilities in the disease so youre i right, it ia disease thats different, diseases of the cortex because they the ability of our mind to exercise selfdetermination. And like many diseases, its another unique way that encompasses this broader context of the individual diagnosed with the disease. You say that moment in the book the caregiver says i have alzheimers. Some of the best i use a lot of stories of my clinical practice and researches work in the book and it wasnt just to add color in between but at key times my patients were my best teachers and one moment is a husband of a patient of mine in the midst of narrating his wifes problems because we make a family coming and hes sitting there telling me whats going on, explaining everything and he grabbed his chest like this and said i have alzheimers and he was right in a sense, he can have degeneration like his wife did but is also doctor bringing her time whats going on in getting the plan and taking the plan home and implement think the plan and in a sense he had her disease as well and one of the things unique about this disease and others the creation of the caregiver, this separate entity and a chronicle in the bookua how caregiving role is incredibly modern. Caregivers have been around since the bible, the book of ruth, naomi ruth is the daughterinlaw of naomi and cares for her motherinlaw but never did she call her caregiver and the word is a chronicle in the book visit appear until about 19 and its link to the level of oldtimers disease is a recognized disease as opposed to aging so have been caring for each other since we were humans but the recognition role that i am a caregiver is a modern iaphenomena, talk about the economic events explained that. Is it a western phenomena or industrial developed nations . I recounting the book culturalur, in the latin communities, the word caregiver does not exist. Nthey have translated our word there isnt that recognition across cultures absolutely if you dont have a recognition of the caregivers as control, what it is is another part of the whole loving daughter, fly, daughterinlaw. Its the recognition of the distinct role of the caregiver and support they need particularly in the modern developed world for families are spread out so theres no question in all diseases are wrapped up in culture but if you pick one disease thats all encompassing him wrapped up in culture, it is this. Are thinking about going back to my early career experience working in nursing but the elderly in theth late 80s, i have a vivid memory of one of my patients and a longterm care unit, severely dimensions, the nature of his dementia was he had the 24 7 experience he believed he was in a pub. Was the happiest man, the physical disabilities that went along with the condition, he was happy and it made me think, the impact on the family unit is often clear, the phenomenology of sickness and illness is more impact on the person who has the biological condition or disease but in alzheimers, especially because there is less awareness increasing. That is often flipped, youre right. I recount an example of that phenomena at large where he writes his wife, jane is okay, its me suffering. His wife had oldtimers and he about butok experience as well that came out about a year ago but all of us with the disability more or less adjusts to a well described phenomena and we see that in individuals with dementia. What makes it even more mysterious is a neurological, or certain lesions in the brain can cause it to recognize the presence of a limb or etc. Is this interesting mix of disability paradox and adjustment but also probably be lesions based and you are right with a Family Member oftentimes suffering is more evident and persistent especially over the course of the disease than it is for the individual. As i have pointed out in the book, one of the reasons i think alzheimers became a crisis, such as because weve not made great progress in treatment but is not made great progress providing longterm Care Solutions for Family Members as well and i think its a combination of failures at the root or one of the roots of the crisis. The book to the tote subtitle, how science, culture and politics turned it into a crisis, can you give this view of the process . The subtitle, the original part of the book was going to because called disease of the century and i remembered gathering at the beginning of last year, i said to a friend a book coming out is a book about covid, i think we will have to change the title so i changed the title to the problem of alzheimers which im glad i did, i got the heart of what the book is about and the subtitled wentll through so lets walk through it. How science, culture and politics turned into a crisis. The first part that fully explained it, over the course of the 20th century a chronicle how science and culture turned a rare disease into a common disease in those events began early 1900s and germany, scientific events and as a spoiler alert, a chronicle in the book, its because they occurred in germany that there was what some call the dark ages were nothing seems to have an the talk in detail in the book what happened, basically germany fell apart. World war one and then economic chaos, brutal nationalism and antisemitism combined together to shut down was spectacular progress in psychiatry and it was because it was so germany based germany would shut that down so it was not until later science picked up that they are looking was culture pick up nick its back to earlier remarks and the respect for autonomy and if you look at Google Search on words in our language, was the historical trend of the word . If you look at the arch of the word autonomy, its fairly used until 1900 and then autonomy starts to pick up mid 20th century autonomy becomes much more prevalent. The cultural events and the third part of the book, the birth of oldtimers on the rise and autonomy and as a result the changing structure of the American Family and the changing if you losing your autonomy with aging is natural, is just the latest to view combine advances and studies that show something going on, together with cultural value losing your autonomy is not of value he 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, bandaids 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 reasons for that . The National Institute was roughly the 50s, National Cancer act and hordes money into cancer but even before it existed from cancer was recognized, again the disease was so recent in the 1980s is an enormous cash as part of the biomedical world to recognize older had to see as a problem and congress had to find research. Er whats interesting and a chronicle in the book, association made a strategic decision early in the time to not pursue with a call disease of the month funding you dont go to congress and say i want money for copd, i wanted for diabetes. The word is Congress Wont do that, they get the money and they decide to spend it. That wasnt true. Congress had done that for National Cancer act and in the early 90s would do that with age creating budgets that allowed nih to ask for how much money and bypass the process. The community didnt got there o find chronicled in great detail, the work of clever activists in the association who managed to get a budget passed for alzheimers and boost funding. I ramble because what has happened is an enormous boost in funding since about 2011 which led to are gross in the field. So hard to get funded, used struggle and research is looking toki see how hard it is to get funding. I want to say they follow the money but we are seeing now it veis possible to get funded the last couple of years and we are seeing more folks going into the field so we got culture, failure to recognize the disease and weve got money. Each has begun to correct worldwide recognition of alzheimers is a problem, congress allowing dramatic increase in funding needed to occur and we are seeing results of that. Wicked talk, to amazing the work they did. I really did wonder, you think about the guy, it seems to be such a distant possibility doing it with so little like what were his motivations . The olympics of the dynamicso and a chronicle to work, they were determined to figure out how to use these technologies to image amyloid and i interviewed both of them and theyre doing their research and they said in the beginning they were like writing want to do that . Imaging the garbage can . The kind of had to in their own in between their grant funded war they would get grants and whatnot and move along. Their discoveries transformed the field and open up a new paradigm in the disease and its a fascinating story. The other thing they did, spoiler alert, they t took enormous reputational risk, they dont say that because i think in the light of history, it all worked out but its obvious there is a moment with her experiment were not working. Its a fascinating story. We are now in this phase were seemed like the big news is about trial and drugs are pretty new and the possibility for oldtimers in the big news recently, i wont even say it but one of the maps. The results are still mixed and controversial like what to the recent stories say about developing drug therapies . I come down as am realist about the possibilities meaning i think we should expect someday that we will have therapies that change the disease. For some patients it will be impressive and brothers it will be a modest success and for others it will be improbable or not effective. Er its not just alzheimers. Other diseases. Anyway having said that lets look at whats happened. Where we are right l now is the fda is poised to potentially approve the drug which is sort of steeped in controversy because unfortunately the companyy performed an interim analysis to save the sources to pursue the further study. It will shut down and the data came in and looks positive. Its a bit of a mess but that study even the most optimistic take on the result it has some effect on the trajectory and eli lilly issued a phase 2 study of a different drug the same idea to go after amyloids and the same thing in effect but not a halting or herself but that change in the decline. The book how and that b model of going after amyloids with antibody approach of the novel idea of going after amyloids like it was a foreign invader using antibody technologies. And win his first paper came out in nature on the cover of nature it was so groundbreaking it actually made the National News and mind you this was not a study done on humans who had alzheimers. It was a study done on genetically engineered mice who were engineered with these amyloids and they did this experiment on them but it was so groundbreaking some of the investigators at the time actually said this field is figure out and they were going to pivot on the disease. I chronicle and the book of the initial enthusiasm has certainly been dampened if ive explained and even studies that dont have controversy you see the slow effect. Again progress can canakaris therapeutics but i think we are in for world of having to live with this disease. We will have to learn how to live with Cognitive Impairment and there are enormous opportunities but also enormous challenges. Bullets its the same with the drug therapy that has that same tech curve about the initial highly inflated hopes and aspirations trailing into the of disappointment and then the adoption. What karl marx called the dialogue of existence and accommodation. Im certainly in the Biotech Program here and interested in the theatrics. I had a lot of interesting questions that i thought were interesting related to some of those topics because as you point out we are going to have to care for an increasing amount of people and very prolonged therapy at the time in response to i maybe drug therapies that e effective in slowing but not ceasing increasing Cognitive Impairment and theres a lot of really kind of great examples of therapists that are not drug therapists and one of them that i know is somewhat controversial its the dementia village concept. You sort of sketched the daily life with dimension this whole concept of deception and thinking back to when i was working in health care and i did a stint in a Psychiatric Hospital with people with dementia and we have are very much instructed that we needed to orient people to reality and that was part of the care of people was not to engage in deception and i think some of that is ethically bounded and some of what was thought to be kind of a therapy in itself and what are the parameters of the loving deception and alzheimers . Yeah a chapter in the book called the world we create is the penalty met chapter of the last chapter about death. But in the world we create it was a lot of fun writing that. That took me to the areas that i enjoyed so without spoiling the whole thing iow came up with ths idea of homelessness mainly there comes a time in the course of a person living with dementia in their life that they are not homeless. They have a place but they are loosened from that idea of home. Th