‘American Dementia’: Author Interview with Dr. Daniel George and Dr. Peter Whitehouse

Transcript

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Today on Dementia Matters, we welcome the authors of the new book, American Dementia: Brain Health in an Unhealthy Society. Dr. Daniel George is a medical anthropologist and associate professor of humanities and public health sciences at Penn State College of Medicine, and Dr. Peter Whitehouse is a professor of neurology at Case Western Reserve University and professor of medicine at the University of Toronto. In their book, the authors highlight how twentieth century policies focused on reducing inequity, inequality, opening access to education and healthcare, and protecting the environment contributed to today’s declining dementia rates; but they also argue the reversals of these policies in the twenty-first century are sending us on a backwards trajectory. Welcome to Dementia Matters, Danny and Peter.

Dr. Peter Whitehouse: Great to be here, Nate.

Dr. Daniel George: Yeah, thank you Nate.

Chin: So to start, let's talk about your book title. How do you both define brain health and what makes our society unhealthy?

Whitehouse: As the neurologist, I'll take the first crack. I mean, brain health is all over the place. Centers of Brain Health are coming up here and there. And we are actually suspicious of that term because - as a good member of the American Geriatric Society, I believe that health is… ah - your whole body. There are things you can do for your brain like learn and education, and hopefully we get back to that in a minute, but basically it's cognitive health. But it's cognitive health in the context of health which is, as you know - I agree with the World Health Organization - it's kind of psychosocial wellbeing, not just the absence of disease. I thought you were going to ask us, though, about American Dementia because that's the more provocative part of the time. Maybe you'll do that next.

Chin: Yes, before I get to that then - Danny, why don't you tell me, well what makes our society so unhealthy?

George: Yeah, I think it comes down to one word which is marketization. I think, in the 1970s, we have really, and we can dig into this later, but we've really unleashed markets as a way of - a fundamental way of organizing our flow of resources, the way we take care of people in this country. And that has led to us also stripping away safety nets that we had in the mid 20th century. It's - it's kind of led to losses for workers, stagnation of wages. There's been a whole cascade of circumstances stemming from the way we organize society in the 1970s that have not served us well societally or individually or in terms of our brain health.

Chin: And we're going to touch on how that affects our cognition and our brain health in a few minutes but then let's go back to, what do you mean by American Dementia? Why use that title?

Whitehouse: So we were carrying the book under the working title of Brain Health in an Unhealthy Society. We got advice from a number of interesting people, including Bill Thomas - you know, come up with something pithy, you know, to put before them. And so we use this title because it has a double meaning: it could mean the clinical dementias, you know, that exist in America, but it's rather more a cultural critique. We think that the dementia field - not geriatricians of course - but neurologists and psychiatrists have this sense that we can fix it with drugs and… but they forget the lessons of the past and they're not planning well for a future which is based on a lot of false hope and false promises. So American Dementia is a critique but it's not just of the dementia field, it's of our country. Our country forgets its past. It doesn't plan well for the future. And since you need impairments of activities of daily living to define a cultural dementia as well - look at our society. Look at what we're doing with the environment, that you already suggested is part of our book. So we're dealing with a cognitive impairment that the Indian writer calls The Great Derangement, but we've called it American Dementia, and it's not just America but we are pretty good at it.

Chin: And so Danny, what motivated you to write this book or be a part of this writing with Peter?

George: Yeah, so Peter and I wrote our first book called The Myth of Alzheimer's, another provocative titled book, in 2008 and the next year, we obviously all experienced the Great Recession. And, you know, I was personally affected - I was unemployed for quite a long stretch. I feel like that thrust us into a different era where all of us were feeling the effects of political failures to some degree or another. And of course the Occupy Wall Street movement was birthed in part in Madison, Wisconsin - where you are, Nate. So that was sort of the water that we were swimming in last decade. In November of 2016, people will obviously remember the election that happened that year, but there's some significant things that happened in the Alzheimer's field, one being the drug solanezumab which is an anti-amyloid drug sort of spectacularly failed in its phase three trial, despite much hyping of the compound, and subsequently we learned that dementia rates had been declining in the United States over the past decade from Ken Langa and his team at the University of Michigan - this study published in JAMA. So that created a paradox right where we're in this backdrop of, you know, political failures and whatnot and yet these dementia rates seem to be falling. So Peter and I are not - neither of us are political scientists but it does require you to think about political economy. What is the context that has produced these benefits if not biotechnology? And so that's sort of the genesis of the questions that we're asking in this book.

Chin: And so before we get to some of your thoughts on that specific topic I do want for you both - and I'll start with you Peter - but can you share with our listeners how you explain Alzheimer's disease to your family and friends? And I'm going to ask this question because you don't view Alzheimer's disease as a single disease that technology can just fix. So how do you share that? How do you explain to people at a dinner party what you do and what Alzheimer's is?

Whitehouse: I think it's easy to just say that the name - that the concept of Alzheimer's has changed and it's still changing and one of the things that science over the last 25 years has told us is it's not one thing - it's heterogeneous. And people are familiar with the idea that diseases can occur in different places. Sometimes people aren't really - they think of diseases as being discovered by doctors, they're really invented by doctors and drug companies. And the idea that, you know, to agree on something being a disease requires a social process. So you know I'll sometimes use homosexuality as an example of a condition that the attitudes of which have change and medicine change with it. So basically, to get the idea that it has changed, it will change, and it's not one thing - and it is related to aging. That's the other part that's important to throw in there because with all these concerns about mild cognitive impairment and subjective cognitive decline, people begin to wonder just what on earth is this entity anyway.

Chin: Danny, do you want to add anything to that before I ask you your next question?

George: No, I think Peter is nailing down the base tenets of the myth of Alzheimer's which is it's not one thing, it's heterogeneous, it's syndrome, and it is intimately related to brain aging processes. And those are the two things we try to convey that we're not just dealing with polio here, a single pathogen. This is a very complex challenge. And in fact, if you're talking to older family or friends, they'll know this as senility right? They hit a different frame for it, a different schema through which to understand it. It's only in the last, you know, 30 or 40 years that it's really become a prominent disease to be cured through a single mechanism drug. And so since that hasn't happened it has sort of created fertile grounds for people to maybe think differently about what it is we talk about when we talk about Alzheimer's.

Chin: Yeah I appreciate your explanation of not separating it from aging. Even though we consider Alzheimer's disease to be an abnormal process, when you acknowledge that it's still a part of getting older, it isn't so easy to just have a silver bullet that takes care of it. And not to be offensive to our infectious disease colleagues, but it's not something that we can simply identify, throw an antibiotic at it and kill it. It's more complex and requires - I don't want to say more thought because I know there's a lot of thought that goes into antibiotics, antimicrobials, but it does require more. 

George: Yeah I like to - I like to think of it as being like a Jackson Pollock painting versus the Mona Lisa. Dealing with something that's very complex.

Chin: (laughs) And so Danny, I'm going to go with you for this question because you had mentioned, you know there are things that we're not doing well from a societal standpoint and that that could be, you know, really harming some of the gains that have been made in reducing dementia rates. What do you think is wrong with our current approach to Alzheimer's disease from a non-clinic standpoint, from a societal-cultural?

George: Yeah, so the model, the story we've told about Alzheimer's is single gene, single protein, single cure. That has not yielded the silver bullet that you mentioned, Nate. And you know what has emerged in the writing of this book is really the fact that the greatest interventions that we've had have been at the level of political economy over the last hundred years. That's things like increasing education for people through the GI bill, through Pell Grants, through the expansion of state universities during the Cold War and so on, and the cognitive reserve that has sort of precipitated. You have a great episode that I just listened to about smoking and brain health and obviously the public health campaigns from the 1960s forward were substantially successful in reducing smoking rates. It went from 42% to 14% from the 60s to today. We have the Great Society in this country, which put health care around more people and allowed for better treatment of vascular risk factors, hypertension, diabetes, high cholesterol and those sorts of things. And then of course, the last thing I'll mention is we were able to delead gasoline in the 1970s. That was through the Clean Air Act with the EPA which was created, of course, as a result of the fire on the river of the hometown - my hometown - in Cleveland where Peter also lives now. (laughs) So - but those interventions -quote unquote - have had a more substantial impact on brain health than anything that has come down the pharmaceutical pipeline.

Chin: Peter, I mean feel free to add on top of Danny’s response, but from a clinical perspective how do you think we're making mistakes when it comes to the approach with Alzheimer's disease and I would just say all cognitive disorders?

Whitehouse: I'm going to generalize that to all of medicine. Well, because I think this is supposed to be the era of personalized and precision medicine in which we know more about you as an individual and your biology, which leads us into the field of biomarkers. I mean, what's happened to Alzheimer's disease in the last ten years is that there's this attempt to reinvent it as a purely biological process which to my mind demeans what is really personalized about medicine, which is understanding an individual patient's story and tailoring your care to that story. Not to, you know, a vast panoply of expensive biomarkers that, in some kind of strange way I don't understand, is going to lead to a pill for you or maybe a panel or a - a cocktail - I love that expression - a cocktail of drugs designed for you. I think that is dehumanizing and unrealistic and expensive and I think dangerous. So that's why, as Danny said before, Alzheimer's is really a lens through which to see bigger issues about how we frame health. You asked us to define brain health in the beginning - if you define brain health as purely something that brain scientists are going to take care of, you're going to restrict not only geriatricians but a whole bunch of other people from playing a role collectively and that's the message. It's not the individual people. It's not just the individual patient. Of course this gets to be attention in medicine too. Doctors are responsible for individual patients, but we are increasingly recognizing you can't do primary care without doing public health.

Chin: And so within that framework of brain health, I do want to ask you both a personal question before I get to your bigger cultural recommendations or societal ones. When we think of brain health we think of lifestyle behaviors. We think of some decisions that people make. And while these may not be curative, certainly there's some evidence to say that blood pressure control can be very helpful to a brain. What excites you, Danny, what do you think about in your research - as far as at that individual level that Peter's referring to - what do you subscribe to? What do you think could have a meaningful impact?

George: Yeah I think, you know, the Lancet Commission on dementia prevention has really nailed down the fact - that's this very hopeful part of the story - which is that about 40% of dementia risk factors appear to be modifiable and within that, I mentioned things like lead poisoning but other - what we're talking about environmental impacts. We've learned a lot in recent years and you've - I think - had an episode on this within the last couple of years, Nate, about air pollution and the effect on inflammation in the brain and vascular injury, so there's an interesting story emerging there. Another kind of unconventional risk factor to emerge in recent years has been hearing loss and providing hearing aids for people. That's a very low-hanging fruit, it seems to me. But I guess in closing - and I know I've said more than one here and I apologize for that - but the education story is very exciting to me too. Not just providing higher education to more people which does appear protective, but encouraging friends, family members, listeners to engage in playful, purposeful learning that builds relationships, that builds community because in this marketized era that we've been living in for the past 40 or 50 years, it's all been about the individual - this sort of monatic, isolated individual - and that's deeply alienating. And I think we're all feeling that especially during the pandemic, but getting back to the community bonds that we've lost through things like education is a really, really inspiring one to me.

Chin: And so Peter, moving beyond individuals and some of these things too that I just asked Danny about. You know, in the book the two of you talk about a collective resilience to dementia. So can you define, for our listeners, really what does that mean? And how does our culture or our governing bodies or our society really address this and achieve true resilience?

Whitehouse: So I think, you know as geriatricians, resilience is an important concept clinically. You can have two older folks that have a similar problem list but there are some that are just able to adapt to change and that's the key word - change. How does the individual, how does the community, how does the culture, for that matter, respond to change? And I'll echo what Danny said and add to it. I mean, the way I think is that education is the key to resilience. If you have a broader set of patterns of neural activity that you can connect with, you can connect with more people. And so this issue that - it is the learning experience that enhances resilience and Danny and I both have worked in three public intergenerational schools in Cleveland where I would recommend to my patients to consider volunteering in the school. Patients with dementia, patients in Danny's research study had dementia. But they engaged themselves in the lives of young kids from Cleveland and they enjoyed a sense of purpose and a spirited engagement in a community. And it's really hard to do studies on that. I mean, how can you determine that having a sense of purpose in life is critical? Almost is a silly question to answer - to ask, let alone answer. But a learning environment gives you that sense of commitment, collective, resilience, solidarity, and commitment to your own brain health and to the brain health of others.

Chin: And in this book, you argue that inequalities of the twenty-first century may be reversing some of the progress that we're seeing in our reduced rates of dementia. So Danny I'll start with you, but I do want Peter to answer as well, what are these inequalities and how are these inequalities actually affecting one cognition?

George: Right, so in the 1970s we had, you know, the crisis of stagflation and oil shocks and basically that led - just like the Great Depression and the World Wars - to a sort of reorganization of society. Whereas it was organized around social democracy in the twentieth century, earlier twentieth century, in the 1970s it was organized around what we might call neoliberalism, or hypercapitalism, hypermarket logic that we've already touched on. And, you know, I've already said sort of the effects of that, but it created massive wealth right - more wealth than the world has ever seen. But deregulating markets and sort of liberating capital around the globe also created real volatility which has led to tens of millions of jobs being outsourced and we saw the housing crisis precipitate the Great Recession that I mentioned at the outset. Wages have been stagnant for people in the middle class for 40 years because workers have sort of lost their footing. The unions have been broken to a large extent. We've lived the last 40 years in an era where money has been trickling upwards; the average person's life has not really been getting better. And in the context of brain health what that's led to is like reversals in vascular health improvements that we saw throughout the twentieth century. Now 6 of 10 Americans, according to the CDC, live with a vascular or chronic disease. 80 million are un- or underinsured in the country - those are people who are not getting help for all of the upstream vascular risk factors and other risk factors for brain health. You know, we've seen a rise in things like deaths of despair. We've lost life expectancy in the country four of the last five years. We lost a whole year and a half of life expectancy last year. And then you know we've cut our public health programs, we've deregulated industries, and that has led to a massive lead crisis once again. This time it's not in our paint or our gasoline, it's in our water, in the water mains that connect us all. Again, just a direct result of not investing in infrastructure, and not investing in public health and public good, and sort of just leaving things to the market. And so I think all of those things portend very dangerously for brain health. And I guess the last thing I'll mention is that we've seen a trend downwards as well in total years of education for the cohorts who are now growing 65 and older. So we saw this sort of exponential rise post-GI bill but those numbers are starting to trend down, especially for men, who are not going to college as much. People are just getting priced out. We've, of course, underwritten all the debt - the massive debt - through Wall Street. You know, another result of this marketization of the landscape we're living in, but all of it does not loom well for brain health.

Chin: Well Peter, that's a tough one to follow. I'm not sure if you want to add to that one or explain, you know, how specifically these climate change - because in your book you talk about climate change and poverty in particular and its impact on thinking.

Whitehouse: Yeah, actually I was just going to go there, Nate, to climate change because - I think COVID is trying to teach us lessons about the importance of public health, but climate change - and I’d call it a climate crisis frankly, change my language on that - because I thought it, used to think it was, you know, an issue for my grandkids. Well, it's an issue - it should have been an issue for generations before ours. It is the intergenerational ethical issue of the times and I try to connect it to the dementia conversation by saying, what is the greatest threat to people with dementia? Well, they get dehydrated easily. They can't get out of the way of floods. They may be blown away in a storm. They just don't know how to respond. Of course kids are vulnerable too, so it's an intergenerational issue. But the reason that climate crisis is the greatest threat to the quality of life of people with dementia is it's the greatest threat to the quality of life of all of us. So quite frankly dealing with aging and dealing with dementia is an important issue, but I sometimes joke that, you know - I know the elevation of Bethesda. It's about 300 feet. Why do I know that? Because somebody's going to invent the cure for Alzheimer's disease just as the NIH is flooded, and besides the only person that could afford the cure for Alzheimer's disease would be Bill Gates or Jim or Bezos or whoever is the most wealthy. It's just - it's just we've got to put what are really important issues for people's health in front of them and not find ourselves in these fantasy worlds. That's what they are - that we can find a magic bullet. Maybe there's a magic bullet to cure the climate crisis. I don't think so.

Chin: Well in the book, you mentioned an “eco-psychosocial” model of health. So can you tell us about the key features of this model and really how do we implement these things into our current health system?

Whitehouse: So I invented that word. Danny has his own neologisms at times. But there's no geriatrician worth his or her salt that doesn't know about George Engel's biopsychosocial model. This is kind of like your model with the infectious disease expert. Yes, the infectious disease expert prescribes an antibiotic, but if the person is living in poverty or can't afford to take the prescription or whatever else, you know, it's not going to work. So we know that with vaccines. I mean getting vaccines into people is the hard part, not necessarily developing them. So why eco- instead of bio-? That's the substitution. Well, it's not molecular biology. It's not reductionist biology. It's not that the doctors need to know their pharmacology better. Yes, diseases have a biological element at the level of the individual patient. Eco says, quite frankly, the doctors got the biology wrong. We need to have a biology behind medicine which is ecological, that's environmental, that's, for that matter, evolutionary. I mean this linear model of - there's a gene. There's a protein. There's a drug. There's a Nobel Prize. There's a lot of profit to be made. It's linear cascade from genomics to economics is just driving medicine crazy. That resonates with what I was saying before. That's what's - that’s why the lessons for dementia about thinking of things in the broader ecological frame rather than narrow reductionistic - I'll use that word again - biology is a key to seeing why we have an American dementia.

Chin: Danny, what are the most promising “socialceutical” - as is quoted in the book - interventions improving the well-being of people affected by dementia?

George: Yeah, that's sort of a tongue and cheek phrase that we use, but I like it because it juxtaposes really nicely with pharmaceuticals and it goes to show you how powerful the social networks, connecting through the arts - all of the things that we've talked about before - how vital those are to dementia care. So I just took my medical students, over the last month, to a nursing home just off our campus and we did Time Slips. And I know you've had Anne Basting on recently. Time Slips is a sort of creative, improvisational storytelling activity. We went to the locked unit, and the skilled nursing home and the students basically facilitated four sessions with, you know, several dozen people who had fairly advanced dementia. And the students, they go into it just thinking of these folks as difficult patients right? That's what they've encountered in their clinical years. But then they emerge from it seeing these folks having creativity and spontaneity and wit and cleverness because the arts, the storytelling, that socialceutical brings something out. It connects to something quintessentially human that is still there. And as Anne says, it transfers us from the pressure to remember to imagination. And so you often see this with music and with pet therapy and gardens - dance as Peter likes to point out. All of these things are really brilliant ways of bringing, you know, people who don't have diagnoses of dementia together but when you do engage folks with dementia in these activities there can be something really powerful that happens. And if you had a drug that could do that for people, that could bring a room of ten elders to life with the way Time Slips does, it would be a billion dollar drug. And so that's where I have seen the most hope and vitality in my work in dementia care.

Whitehouse: And social prescribing is a real phenomenon. I mean in the UK particularly. This idea that you don't have to write a prescription for a pill, you can say to them, you know, exercise or dance. So that's one manifestation of this concept that Danny invented.

Chin: And of course what I love is what are the side effects of art therapy and pet therapy and dance and being social? A good time and feeling good.

Whitehouse: But I would say this - you called them therapy. This is part of the dehumanization. You like - I don't know what you like but - you like to dance. You like music. You know most people like arts, so why is it that we have to make it a therapy? So we can take human beings, dehumanize them, and then rehumanize them by therapy. Let's just say they're human beings and they like art, music, and let's just do it with them.

Chin: Now that's a point well taken Peter. I appreciate that because the words we use matter and I certainly think you're right by incorporating therapy. All right, well I'm going to incorporate that, Peter.

Whitehouse & George: (laughs)

Chin: You know, I wanted to end by asking - for both of you, and I'm going to start with you Peter and I'll end with you Danny - what would you want your reader to do next after reading this very thought-provoking book? What is the intention, the goal? What should a reader do?

Whitehouse: I have two quick thoughts. I mean, in some sense, it's to open the mind and the imagination to new possibilities. I think we need that in the world in general, frankly, and I think that's another example of how doing that with our own minds, our own thought processes, could be helpful. The other thing which is a little bit more esoteric in some sense, but I think it's critical, is I go back to the mission statement of this intergenerational school where people with dementia and kids learn together. The mission of the school is lifelong learning - which is kind of a no-brainer, so to speak, for an intergenerational school - but it's also spirited citizenship. I believe, and Danny believes, that democracy is threatened around the world. That the gains we've made when we acted socially and democratically - you know, social democracy - are huge and we are losing that unless people say that the best thing they can do is to be a spirited citizen and to get out there and make sure that people's rights to vote are not taken away or whatever. So I mean it is that, in that broader sense, a mission. It's a political statement that - take care of your brain, take care of other people's brains, and take care of society for our children.

George: Yeah, and to that I would add, you know, we sort of joke in the book that it's not a self-help book, it's an other-help book. What Peter's alluding to is spot on. And if we think about the initial framing of what american dementia is - you know, the inability to remember things from the past or project forward in a meaningful way. You know, from a policy perspective, you could imagine things like universal health care being one very clear population-level intervention that would help brain health. You can imagine free tuition for higher education which has been talked about for the past decade, or free vocational training for people as being a brain health intervention. You know, a job guarantee and a living wage which has been talked about since Martin Luther King but we haven't realized yet. Just lowering stress and anxiety and precariousness in people's lives. And then of course tackling the lead crisis is another major way to look forward. But then I'll just end by also alluding to the fact that one of our chapters is called “Occupy the Nursing Home”, and it gets to what you were asking about before, Nate, about  socialceuticals. And we would charge any reader to think about, what are your passions? What are your talents? What are the hobbies that you bring - that bring you joy and purpose, and could you imagine bringing those into a nursing home to make quality of life a bit better for people? One of my medical students was an aspiring Broadway performer before she came here. She's now going to start playing show tunes and doing, you know, doing piano and singing in the locked dementia unit where we did Time Slips. Other people could absolutely imagine doing things like that. We are very talented, innovative, resourceful species, so I would encourage anybody to think about how they could go into these assisted living environments and really add to the purpose and quality of life of people living there.

Chin: Well I want to thank you both, Dr. Daniel George and Dr. Peter Whitehouse, for being on Dementia Matters and I want to encourage our listeners to pick up their copy of American Dementia: Brain Health in an Unhealthy Society, where they can learn much more than what we discussed today and really challenge what we're thinking about. And I love that call to action - find your passion and spread it. So with that, thank you both for being on the podcast.

Whitehouse: You're welcome.

George: Yeah, thank you for having us today.

Whitehouse: and I'm going on to another discussion of media. So Nate, I'll teach you some more about geriatrics later on. Don’t build trust in those biomarkers.

Chin: (laughs)

George: (laughs)

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Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers.

This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions.

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