Finding Hope and Creating Change: Discussing Alzheimer’s Advocacy with Cynthia Stone and Walt Dawson

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters, and this is the Brain & Life Podcast.

Dr. Correa:
Welcome back to the Brain & Life Podcast. It seems these holiday months go so quickly and November was Alzheimer's Awareness Month. We want to make sure that this growing awareness doesn't stop with November, and we want to continue the discussion on Alzheimer's disease, other dementias and neurocognitive disorders. And so make sure to check out some of our past episodes about dementia for more information. But Katie, it's important we go beyond just the next medicine and the research.
There's ways that we can impact our communities with the humanities and arts, and they can help us understand and grow our empathy for people living with dementia in their lives. Is this something that you also explore in your practice in helping people live with the neurologic conditions that impact their family?

Dr. Peters:
Absolutely, and I think that with patients, whether they have a dementing illness or they have a chronic neurologic illness that may not necessarily need to lead to dementia and they need to fill their lives with things that they enjoy and have pleasure in. And a lot of times that includes the humanities and arts and some of our patients will definitely have challenges anywhere from our autistic patients that really can't handle too much overt stimulation all the way to maybe somebody who has an aphasia or a sensory perception problem. That they don't see things or understand things the way they did before. So I think helping them navigate it and find pathways for them are definitely important.

Dr. Correa:
In today's episode, we'll feature two people who have been selected and completed a program as Atlantic Fellows with the Global Brain Health Institute, Cynthia Stone and Walt Dawson. Cynthia's a documentarian and she'll share with us how she's tried to make this effort of connecting the people through the art of film in her documentary that now has been released and is being seen across the world, named Keys Bags Names Words. And Walt shares with us how his own childhood and much of his own development personally and professionally was impacted by his father's journey with Alzheimer's disease.
It's just amazing that they both take the time to open up and share their own perspectives and unique that the Global Brain Health Institute is taking this effort to bring in artistic perspectives from all of the community being impacted by dementia. And we'll be continuing that discussion in the second part of our episode with the medical expert, Dr. Bruce Miller, who was the founder of the Global Brain Health Institute at University of California San Francisco.
Katie, I'm really looking forward to your perspectives after this episode. For our listeners, make sure you subscribe so you don't miss our upcoming episodes. Katie, what do we have coming up next?

Dr. Peters:
So we have a Neurology in the News episode and the questions are, can regular exercise modify one's risk of Parkinson's disease? Do special diets like the mind diet or the Mediterranean diet or diets rich in omega-3 fatty acids hold the key to unlocking whether we can develop Alzheimer's or ALS? So check out this Neurology in the News episode where Daniel and I will break down some of the recent studies that suggest that what we do and what we eat maybe modify our risks for developing these neurologic disorders.

Dr. Correa:
Please enjoy this episode.
Welcome back to the Brain & Life Podcast. Today joining us from San Francisco is Cynthia Stone, who is an award-winning filmmaker and director that has been creating engrossing documentary style pieces for nearly three decades. You may have heard her stories on NPR or seen them on PBS, BBC or Discovery Channel or many other possible TV channels. Her work has touched on how our education system, the environment, our health system, poverty and equity issues impact all of us.
But in each, she's been inspired to highlight the people and the organization's finding solutions to seemingly insurmountable problems. It is with the wisdom that she's gotten from this work over the years, the love and the humor of those she featured in her documentary titled Keys Bags Names Words. That helped her connect with her own mother throughout her aging process and memory loss. Thank you, Cynthia, for joining us.

Cynthia Stone:
Thank you, Daniel. I'm so happy to be here.

Dr. Correa:
And today we have a double feature, we're including also Dr. Walter Dawson. When he was 10, his father was diagnosed with Alzheimer's disease. Over time, he not only lost a beloved parent, but in caring for his father, his family also lost their life savings. Alongside his mother at an early age, Walt launched a lifelong pursuit to campaign and advocate for families like his. This started with a letter writing campaign and ultimately led to him testifying before Congress at a young age of 11. He continues this work today and is one of the advocates and leaders that's featured in Cynthia's film.
He now also works as an assistant professor at Oregon Health and Science University's Aging and Alzheimer's Disease Research Center and the Portland State University's Institute of Aging. And he also was selected as a senior Atlantic fellow for equity in brain health with the Global Brain Health Institute. I really appreciate you also joining us here, Walt.

Walt Dawson:
Great to be with you. Thank you so much.

Dr. Correa:
So Cynthia, tell us not about your mother and her battle with Alzheimer's. I want to know about your mother and who she is. She inspired you at work. I'd love to hear.

Cynthia Stone:
Thank you so much for that question. That's the first time anybody's asked me that and I so appreciate it. She is an amazing person. One of the smartest people I've ever met and one of the funniest and that lasted even after she didn't know who I was. There was this great story of my brother and I in kind of the last phases of her disease when she really didn't know me and she loved to be outside. So we carried her outside and my brother wrapped her in this beautiful shawl and he said, "Mom, you look like a supermodel."
And my mom, she remembered very little at that point without skipping a beat, she said, "Yeah, after a rough night." So she still had that essential humor that I loved. She taught me a lot and she was a lot of fun to be with. She's a great lady.

Dr. Correa:
And Walt, I mentioned at the start of the show that your father was diagnosed with Alzheimer's. You were only 10 years old. I want to know some of your memories of your father before all that and what you've carried forward from him in your life since then.

Walt Dawson:
I have lots of wonderful memories of my father. I think one of the greatest memories that I have is his love for reading. He used to read to me a lot as a child, and I think his real love and passion for knowledge is something that I've taken on from him. We were very close. In many ways, I wish we had much more time together before he really started to experience dementia. But in the time that we had, I have lots of really happy, wonderful memories of him.

Dr. Correa:
I think that's just a universal sentiment that so many of us have when we start to lose parts of any of our family members, whether it's from dementia or any other reason. And Walter, you started this effort of advocacy for families living with different dementias, but including Alzheimer's. You were right there at the front line of advocacy work, but so much has changed and didn't change. What do you feel like you've learned from the perspective of that time working in advocacy all those many years?

Walt Dawson:
I appreciate your comment. That much has not changed while many things have, right? I think this is still many of the same very issues and concerns that I was advocating for as a 10, 11-year-old today remain absolutely needed by. As a result of my dad's journey with dementia, I spent most of my childhood and teenage years as a care partner along with my mom. We attempted to really provide care for my father as best we could.
But it soon became clear that a placement in a memory care community was really kind of the best option for him to be safe and to receive the care that he needed. But the financial devastation that that caused, we nearly kind of lost everything in our efforts to make sure that he was getting the care that he needed. That really drove that advocacy that I began at that age, but also really drives the work that I continue to do today to advocate for better public policies.
I would've at that age really hoped to have seen really significant substantive change taking place. I think I've learned that it's a slow process often, and that dedication to ensuring that that happens is fundamental to the work that I do.

Dr. Correa:
So if I can ask, probably the most challenging follow up for you is now after there has been some healthcare change, there are still families in a situation like yours who are financially devastated, helping caring for an individual, whether they're managing with dementia and its progression over time or other conditions that require a lot of assisted care.
If you could, can you explain for us and for our listeners who aren't part of a family dealing with that, why is it that so many families are so financially devastated by just trying to help support and provide the care that their family members need?

Walt Dawson:
The reality is that we don't have a long-term services and support system in place in this country. What we have is a highly fragmented system where you have the Medicaid program, which is a very important program, but it is really the kind of default payer for when someone needs long-term service and supports due to dementia or other conditions. And even though it's such an important program, it is highly variable across states.
Or just as important as really the fact that the eligibility requirements for that support more or less mean that someone has to be at or near poverty level to qualify. And that's just not an efficient way of doing things. It's a very broken system that I think really developed in a time when our population and health needs looked very different. And honestly, we can do better and we must do better as a society.

Dr. Correa:
And Cynthia, one thing I really appreciated about your documentary's work is it tries to incorporate the stories not just of people living in the United States, around the world, how those different communities and families are living with the care for their family members and with dementia and how some of those communities are also adapting to the needs of their society. What are some things that you learned from these many different communities that you went to and visited in the families?

Cynthia Stone:
A lot of countries are trying to develop a national plan, and I think that is something that would be fantastic for every country to do. So not only care is included, but also building awareness. And you hear in the film, one of the fellows from Botswana saying that if somebody is exhibiting the symptoms of dementia, they might be considered a witch. So in a society like that, just building awareness can go a long way. And then you have a culture like Costa Rica where intergenerational activity is just baked into life. I feel like in the United States, we're so isolated.
And so those things, like in Nepal for instance, your elder friend or parent or grandparent lives near you or with you, and they're just included in every activity. So isolation and loneliness is a really big risk factor for dementia. And so I think societies that have that baked into their way of life is really something we can learn from. I have a friend who, her husband had dementia and he loved photography. So she got a volunteer who was a photography professor to just come three days a week and walk around San Francisco with him taking photographs and then adjusting them on his computer.
And just as a community and as a society, as Walt said, that we can all do better to try to figure out how we can incorporate people with cognitive decline into everyday living so that they can have a really rich full life that actually will support their brain health also.

Dr. Correa:
And I'm wondering, Cynthia, you mentioned earlier that from the people you got to meet and interact with during the film. You learn things that changed how you were able to share space with your mother because I think that was also a nice feature about the documentary. That it wasn't just about the problems or the challenges of providing care or in our society, it was also really focused on connecting.

Cynthia Stone:
That is really one of the main themes of the film. And I'll use Dana as an example. Dana Walrath is an anthropologist and artist, and she creates a work of art that is kind of a metaphor for someone with dementia. She's making this piece of art, it's this very colorful piece of art, but there are holes in it. And she said, "We always think of dementia in terms of the loss, in terms of the holes, but I'm going to fill these holes with beautiful colors."
And so she talks a lot about these beautiful moments that you can have even with someone who doesn't know you as the daughter or the son anymore, that we're kind of really attached to these labels. But if we let go of that and just be in the moment with people and that we don't try to always pull them back into our world, but to go with them wherever they are, it just makes it easier for them. It makes it easier for us.
And Dana published a graphic novel called Aliceheimer's. Because for her, it was like going on this adventure like Alice in Wonderland with her mother during that process. So it just allowed me to not be afraid and just kind of lean into it and try to do my best. Not that there weren't those heartbreaking moments, but there were beautiful moments too. So to try to capture that as well.

Dr. Correa:
In the film, you highlight different programs that provide activities for aging individuals, for whole communities, whether it's dancing and exercise or so on, and opportunities to connect with the arts. There's a lot of variety in the kinds of programs that are available. Walt mentioned that. Even in the United States, it's a very fractured system to what exactly is available within each state in each community.
Well, why is that? [inaudible 00:16:20] specific things or examples in certain countries or in certain states where you see this being done in a very good way. And how can a family living with the situation now try to emulate that for their family member?

Walt Dawson:
There are different approaches being taken around the world. What I think is really important in terms of policy as it's often challenging to get dementia, Alzheimer's disease, brain health onto the policy agenda, right? And part of that is there remains a need for greater awareness and a reduction of stigma. Cynthia talked about this a little bit in terms of that stigma, but that is one of the barriers that does exist. So any effort to really reduce that stigma and to raise awareness will help with ultimately allowing programs and policies to move forward.
That can really better support people both again, living with dementia as well as care partners. I don't think anybody quite has it right yet. If I'm honest, I do think that there's great programs and there's great ideas, and that's something from my work with Global Brain Health Institute and other partnerships globally is really learning from others and collaborating to really join together from different disciplines and perspectives and experience is to really advance better outcomes, better policies.
I would just say that my vision or dream, if you will, is that one day we will see perhaps formal commitments between countries on the brain and on dementia. And there are national plans for dementia that Cynthia also kind of mentioned in many countries. But that's ultimately what we kind of need to really ensure that we have the adequate systems in place. And that would include ensuring that there might be a care and support system in place.
But it's also about advancing and bolstering brain health about commitments to reducing the risk factors for dementia. And that's a part of the work that I do now is trying to work with others to kind of move that forward.

Dr. Correa:
I could see the possibility of someone wondering. I've seen in the news already that there's several different medicines "out" that are for dementia, in quotation marks for our listeners. Cynthia, you have created with the work and the help of many others, this documentary sharing stories from the United States, from experts and from around the world about living with aging and dementia. But how can our listeners see the film?

Cynthia Stone:
It's pretty exciting. The film's now being shown in about 28 different countries. We've had about over 105 screenings so far. And it just goes to show that we were making the film because you're right, there's so many incredibly talented people contributing to this and people like Walt who's generously shared their stories. But everyone I met when they asked me what I was doing, they would say, "My father or my brother or my grandpa, so many people have it." And we've been very happy to see how many people are really hungry to show the film.
And so we're doing right now a very grassroots community engagement program because it's not just about people seeing the film, but it's about getting them connected to resources, getting a conversation started. So it's being shown in screenings throughout the world right now, and they're everything from small home-based community screenings to people showing it in a movie theater. So we just really encourage people, if you'd like to screen it somewhere too, go to the website, it's keysbagsnameswords.com, and you can find out more about hosting a screening.
But we're just really excited with the momentum of the film. We hope that keeps going, and we're hoping to do a cutdown for PBS and later on and video on demand. So keep an eye out for it because it's just starting, I think, and we're really excited about that.

Dr. Correa:
And so wait, keys, Keys Bags Names Words, why the name and how did that come together?

Cynthia Stone:
Well, so there's a very beautiful moment and a powerful moment in the film. There's a woman in Wales who has a theater group and everyone in the group either has dementia or is caring for someone with dementia, and it's a life story group, and they perform to audience who can impact, make a difference in the lives of people who have dementia. So policy folks like Walt and politicians and people caring for folks in hospitals. So at one point, a gentleman named Nick is telling his story.
He's basically talking about the things you lose. So it is kind of a metaphor for the progression of loss. And so he just looks right into the camera and says, "Keys, bags, names, words." And so that became the name of the film.

Dr. Correa:
That's a touching metaphor. And Walt, you've mentioned several times in different ways, the fact that we need programming at all levels in our society. We need many more resources. We need societal change and leadership. So how can each of us and our listeners contribute and advocate for this societal change towards an equitable future for brain health and healthy aging?

Cynthia Stone:
I think to really move toward equitable healthy brain aging, there's a lot that we can do, right? So first off, policymakers respond to personal stories and sharing those stories is essential. I think we can all be advocates in that sense of really seeking opportunities to raise awareness through that. And I think there's a role for families and for care partners to do that, but there's also a role for professionals and providers to do that as well. While I think awareness has increased somewhat in recent years, there really remains that need to generate awareness around dementia and around the human impact.
I think this film is powerful because it really shows that in spite of the pain and some of the great difficulties that too often really accompany this disease. There are moments of great joy and there's also hope. And I think it's that message of hope that is really important as we really try to advance research as well as we try to advance better systems of care and support, but also importantly as we try to advance better public policies.

Dr. Correa:
Thank you both so much for joining us. I encourage our listeners to stay tuned. We'll continue to this discussion by talking about some of the evidence on the types of activities that are featured in the film on how they might help someone living with dementia and help with prevention and hear some more about the Global Brain Health Institute from Dr. Bruce Miller. Thank you, Walt. Thank you, Cynthia. It was a pleasure having you. Thank you so much for sharing your stories and your time.

Cynthia Stone:
Thank you. Really enjoyed it.

Walt Dawson:
Thank you. Appreciate it.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.
I'm hearing from Cynthia about her documentary and all the different families and community that she met. And then Walt in his own words about his own family's experience with dementia and how he's turned that into a career in life of public advocacy. I'm now joined by Dr. Bruce Miller, a distinguished professor in neurology at University of California in San Francisco, and he directs their UCSF Memory and Aging Center. He's also the founding director of the Global Brain Health Institute that we previously mentioned in our interview with Cynthia.
Bruce specializes in behavioral neurology and the study of neurocognitive disorders such as dementia. You may have heard him or seen him in the past in magazines or the New York Times, 60 Minutes and PBS NewsHour. And he's authored many, many different scientific articles and books on brain health and dementia, including Finding the Right Words, a book on Alzheimer's disease in the perspective of a daughter, which he wrote together with Cynthia Weinstein.
We mentioned the Global Brain Health Institute's work in our interview with Cynthia and Walt and we're excited to discuss it and the global impact of health with its founder. Thank you, Bruce for joining us today.

Dr. Miller:
Thank you, Daniel, really honored to be with you and the two people you previously interviewed. Cynthia and Walt are two of my personal heroes, so thank you so much.

Dr. Correa:
This episode continues a series of past episodes that we've talked with different people affected in the community with dementia. Includes journalist, Greg O'Brien, Lauren Miller Rogen, filmmaker, Michelle Boyer, and the journalist, Kitty Eisele, and also caregivers affected by dementia, including Christina Zorich and Maria Shriver. So we encourage our listeners to go back if they're interested in dementia, to listen to some of those episodes because they continue a thought process and a learning process for all of us about dementia.
We've mentioned in some of those episodes, dementia and Alzheimer's and those interviews with the medical experts also. But I'd like to hear from you, how do you describe what is Alzheimer's dementia versus dementia to people when you're explaining it within your family or people in the community?

Dr. Miller:
Yes, we have come a long way from using the term dementia as an explanation for what is wrong for an individual person. So I think increasingly we want to be very specific about the cause for dementia, this progressive, cognitive and functional decline. There are many causes, some are treatable, some are not. Some of these dementias go very quickly, others go slowly. And I think the one that is best known, but not the only one is Alzheimer's disease.
So Alzheimer's disease is a disorder that is slowly progressive. It's caused by the accumulation of two specific proteins in the brain, amyloid and tau. It tends to affect specific regions including the hippocampus, which is important for memory and the neocortex, which is important for language, multitasking and visual spatial function.

Dr. Correa:
In some resources, it's described Alzheimer's disease can be affect or be the cause as an estimated up to 70% of different dementias. But is this because the processes that lead to Alzheimer's dementia or Alzheimer's disease is one of the most common causes for a type of dementia? Or is it possibly that some of the other types of dementias may be underdiagnosed or underrecognized?

Dr. Miller:
We underwent initially the Alzheimerization of dementia is the term I like to use. So when I was growing up in this field, and that was many eons ago, but still is common today. People tend to assume that if you had a progressive degenerative disorder, it was due to Alzheimer's. I think that has changed dramatically. I think it is the most common cause, but with two important caveats. One is that as we tend to get older, we also tend to have not just one cause for our dementia, but multiple causes.
So in someone who is 80 or 90 and who we make a diagnosis of Alzheimer's disease, we know that they often have other disorders like vascular disease of the brain, Parkinson's type pathology that add to the problem and make it a little bit harder, I think, in my mind, to treat with one medication. The other important I think story is that in younger people with progressive cognitive impairment, Alzheimer's disease is, if you're under 60, not the most common disorder.
Frontotemporal dementia is more common. And so I think diagnostic precision is becoming increasingly important. You don't want to get treated for the Alzheimer proteins if you have frontotemporal dementia or another cause.

Dr. Correa:
And you mentioned frontotemporal dementia, another one of the types of neurocognitive disorders or dementias. And that it's within this category that may affect younger individuals or be among the types of dementias that is under-recognized. Very recently, I think within our news and the media, there's been a lot of talk about Bruce Willis and his family and his diagnosis or description of having primary progressive aphasia. Now there's a relation between that and frontotemporal dementia, correct?

Dr. Miller:
Correct. The big difference between frontotemporal dementia and most other dementias is they tend to hit the front part of the brain. If it starts on the left side, people develop language problems. The left side of our brain is there for speaking, understanding words, reading, writing. If it starts on the right side, which I call social brain, it tends to present as a behavioral disorder.
So we really have subtypes of frontotemporal dementia, some on the left side that present with progressive language disorder. We call this progressive aphasia. Some on the right side that present with a behavioral disturbance, which is called behavioral variant of frontotemporal dementia.

Dr. Correa:
And for our listeners who want to learn some more about frontal temporal dementias, we'll have links to two organizations that have a lot of patient and family resources, including CurePSP, which you have heard some about before in our past podcast and the Frontotemporal Dementia Foundation. Now, Bruce, what is the worldwide impact of Alzheimer's disease and the non-Alzheimer's type dementias?

Dr. Miller:
Well, let me start with the US where we have really good statistics, but the problem is even more severe and more austere when we start to think about the rest of the world. So Alzheimer's disease is the most costly disease in the United States, so this is many billions of dollars every year out of our budget. Some estimates are around almost $300 billion a year, and this is a disorder that is not going away and is not getting cheaper to diagnose or treat.
It's really a very sad, I would say, catastrophic personal story as well because I think what we are doing with these diseases, which affect mostly elders, is losing the wisdom of our wisest part of the population. So many of us have been influenced by grandparents, and I'm hoping now as a grandparent, I'm making a positive impact on the next generations. But with Alzheimer's disease and frontotemporal dementia, we gradually lose that capacity. So we lose people who may be in the workforce. We lose people who may be in an advising capacity for families and even helping with care.
The epidemic is clearly worsening in low and middle income communities, whether they're in the United States or in South America, Central America or Africa. So we think that by 2050, the burden of Alzheimer's disease will double in the United States. It will triple in places like South America and Africa. And the story is really a sad one because we think 40% of all Alzheimer's disease could have been prevented with the social determinants of health.
These are things like treating hypertension, preventing loneliness, giving people a decent education so that they learn how to read, preventing social isolation, poor sleep, cardiovascular risk factors, so head trauma. So these social determinants or health are something that in higher income communities we're doing something about. But I think in Cynthia's movie, you really see an emphasis on how little these social determinants are being addressed in poorer countries.

Dr. Correa:
I think that really helps give all of us a little bit better context on why working towards making a real change in terms of the frequency and the prevalence of dementia is so important not just to individuals and our families, but really to our societies. Continue that discussion then. In terms of some of the ways that we can make major changes in terms of prevention of dementia, whether that's for ourselves or for our families, or wherever you think it makes most appropriate comment on things that we need to do at a society level.

Dr. Miller:
Well, I didn't mention yet my favorite preventable risk factor, which is low exercise. And I think the data here is so clear that exercising, raising the heart rate for 30 to 45 minutes at least five times a week, I like more, is a powerful prevention. And even therapy for diseases like Alzheimer's and Parkinson's disease. It works in a lot of different ways, some of which we don't understand, but we know that when we get into active exercise, we're releasing growth factors that tell neurons to grow and survive.
We're releasing factors that diminish depression, anxiety, and the practice of exercise also is increasing cardiovascular fitness, protecting the brain from things like stroke. So this is something that should probably start in youth, but the great data is that even in elders who have never exercised, instituting exercise will lead to a lower prevalence of dementia and improves quality of life and probably progression of dementia even once it has started.

Dr. Correa:
Where are we with our understanding with sleep and its impact on preventing cognitive decline and progression?

Dr. Miller:
So there've been a number of epidemiologic studies that have been done that show that people prospectively who are not sleeping well are at higher risk for developing cognitive disorders than people who aren't. We're starting to fill in some of those details about why. One of the details, it's fascinating, I never would've predicted it, is what the group at Washington University, David Holtzman, has shown. In particular, they show that if you don't get into deep sleep, you are not able to clear the bad proteins from the brain.
So tau and amyloid, when we get into stage four sleep or deep sleep, are cleared. If you are not getting into deep sleep, it increases the likelihood that these and other toxins accumulate in the brain, an increase the likelihood that you will develop at degenerative disease. Now, we have been giving people for many, many decades now, drugs that decrease your ability to get into deep sleep. These are things like Valium and the benzodiazepines and some of the antidepressants. And so this is a very important preventable factor that we really have to start thinking about.
How can we get people not only into a good sleep pattern, but actually getting into deep sleep? And let's make sure we don't add to their burden with the wrong medication. So that's one really important story. Another really important story about deep sleep is that we've learned that that's when we consolidate our memories. So yesterday, I'll just tell you, I was with my grandchildren. We had an interesting restaurant experience.
My grandson, who was an amazing guy, ordered the birria, which was a delicious taco. It was a lovely event, and I'm remembering all of this because when I was in deep sleep, I consolidated that experience. If I don't get into deep sleep, my memories in the next day are shattered, disrupted. So I think sleep is something that is so important. I would put it exactly on the same level as exercise and blood pressure. And so I think the science of this is emerging.

Dr. Correa:
For our listeners, we had the episode with Marilu Henner about her highly superior autobiographical memory and with Dr. Craig Stark learning about memory. And both of them mentioned that really one of the key first steps in their strategies and recommendations for improving our memory is sleep, as one of those. And Bruce, you mentioned the deep sleep cycle stage of our sleep and within our sleep, we have cycles throughout the night. But if we're not sleeping enough hours, that actually decreases how many times we can have a cycle and even have a chance of getting there. What do we know really in terms of the hours on the how many we need and is there too much?

Dr. Miller:
We're all a little bit different. Louis [inaudible 00:38:23] and [inaudible 00:38:24] here at UCSF has studied sleep cycle genes. And so they study people who get very little sleep because of the genetics that they carry and others who sleep much longer. Some people who wake up early in the morning, others who can't wake up until evening. And so I would say there's a lot of variability, but in general, I think we want to see people getting seven to eight hours of sleep every night.
The more continuous, the better that is. This is really important and we're all different. My wife likes 10 hours a night. I like six hours a night, but I think we're both safe if we go within our own personal parameters.

Dr. Correa:
Now, I wanted to come around to the Global Brain Health Institute there at UCSF and as a part of a program that both Cynthia and Walt were part of. Can you tell us about the Global Brain Health Institute and why it was founded?

Dr. Miller:
Yes. It was founded because of a man who just passed, a great man named Chuck Feeney. Almost no one has heard of him. He gave away $8 billion of his own personal worth. He did this with a explicit goal of improving equity and health across the world. Most of his initial donations were given around infrastructure. So many hospitals across the world, particularly in poor regions of the world, were donated by Chuck Feeney and his Atlantic Institute. His last billion dollars has been focused on training fellows who will help to make the world more equitable for the next generation.
We're one of the seven other Atlantic Fellowship programs, ours is the only one focused on brain health. And it is jointly run between our Irish colleagues at Trinity College in Dublin and San Francisco. Why San Francisco and Dublin? Well, Chuck was an Irish American. He loved Ireland and he lived in San Francisco and he loved San Francisco. So we run this program together. We train approximately 40 fellows a year, 20 at each site.
These people range in disciplines from artists to dancers because we think that the next generation of health leaders need to get people involved with the creative arts. There are also physicians, nurses, people in health economics who think about preventing this global epidemic that is going to happen if we don't do better.

Dr. Correa:
I think particularly it's unique and very interesting that this institute and the Atlantic Fellows Program has this strategy of addressing brain health across all types of our life and society, whether it's the arts or encouraging movement in individuals or everything all the way up to public policy and world health initiatives. Really, what have you learned most recently, do you feel like, from some of the fellows that you've been working with?

Dr. Miller:
I think I trained a neurologist for almost 40 years, so there's a lot that I know about that. But working with these artists and seeing how they can impact the public, how they can impact policy, how they can move minds has been really an extraordinary part of my experience. People like Cynthia who put together a film about caregiving, not only they move me and make me think different ways about how I can help people as a doctor, but I think they help caregivers across the world. I think Cynthia is really lifting up caregivers everywhere where they get to see this movie.

Dr. Correa:
For our listeners in the community who are interested in becoming more advocates and activists within brain health, is there a way that they can participate and take a look at the Atlantic Fellows program?

Dr. Miller:
Absolutely. We have a great website, which we could share with you. We are finishing our selection for 2024, but I hope those brilliant health economists, healthcare deliverers, artists, wherever you are, take a close look at this because we really have a sense of urgency about changing brain health.

Dr. Correa:
Bruce, before we end off, I'm just wondering, what have you learned from the caregivers and the families living with dementia that you support in your practice and through all the activities that you do?

Dr. Miller:
I'm writing a book with my friend, Virginia Stern, which is called Social Brain Revealed. And one of the things that we emphasize in this book is that we have a whole circuitry on the right side of the brain that is involved with values, respect, empathy, fairness, authenticity. And I think this is a part of the brain that is getting bigger and enlarging when someone is involved with caregiving. In the same way that you learn a new language, you increase synaptic density mostly in the left side of the brain.
When you engage in these beautiful behaviors of looking after other human beings, what you are doing is you are changing the synapse density in your brain for the better. I think it's an activity that is so much part of the human experience. We didn't evolve because we were stronger or bigger or fiercer than other animals. We survived in part because we had grandparents around. We're helping to look after the next generations because we cared about other people who were vulnerable.
So I think this so much is what happens with caregivers. They are part of that network that is so human, so unique to our species that I'm particularly proud of.

Dr. Correa:
I think that's so beautiful to remember and contrary to the idea sometimes is described and focused on as the caregiver burdens and stresses. And to remember our caregivers are developing even further that part of their brain and strengthening their superpower of empathy.

Dr. Miller:
Thank you. Beautifully said.

Dr. Correa:
Thank you, Bruce, for joining us and for sharing with us and our listeners. We really hope that you have a great holiday and connect with those you love.

Dr. Miller:
Thank you. Thank you. You too, Daniel. Be well.

Dr. Correa:
Thank you again for joining us today on The Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org. Don't forget about Brain and Life in Español.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to BLpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain & Life Magazine on many of your preferred social media channels.

Dr. Peters:
And these episodes would not be possible without the Brain & Life podcast team.

Dr. Correa:
Including Nicole Lucier, our Senior Manager of Public Engagement.

Dr. Peters:
Rachel Robertson, our public engagement coordinator and Twin Cities Sound, our audio editing partner.

Dr. Correa:
We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at neurodrcorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online at Katy Peters, MD Ph.D.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find The Brain & Life Podcast. See you next week.

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