Ep 93: Beyond Treatment - Dr. Rosand's Mission to Prevent Brain Disease Before It Starts

In this episode of BrainStorm by UsAgainstAlzheimer’s Dr. Jonathan Rosand, co-founder of the McCance Center for Brain Health at Harvard discusses his revolutionary approach to preventing brain diseases before they start with host Meryl Comer. Dr. Rosand explains how his work originated from his experience treating severe brain injuries, where he witnessed patients and their families developing depression, anxiety, and PTSD after surviving critical care. This led him to ultimately developing the "Brain Care Score" - a tool that measures 12 daily lifestyle choices that can substantially reduce the risk of dementia, stroke, and depression. The Brain Care Score gives individuals agency over their brain health, emphasizing that prevention is about daily choices rather than complex medical interventions. 

Learn more about the Brain Care Score at the McCance Center for Brain Health. 

Produced by Susan Quirk and Amber Roniger

Transcript

Dr. Rosand (00:00):

Brain health is a complicated, confusing term. I had a patient whose son has schizophrenia, adult son, and she asked me after we talked about brain health, well, does that mean that my son, because schizophrenia isn't curable, will never be able to have a healthy brain? And so what we learned in conversations like that was that health so often is viewed by all of us as a yes or no condition.

Introduction (00:29):

Welcome to Brainstorm by us against Alzheimer's, a patient-centered nonprofit organization. Your host, Merrill Comer, is a co-founder, 24 year caregiver and Emmy award-winning journalist and the author of the New York Times Bestseller, slow Dancing With a Stranger.

Meryl Comer (00:46):

This is Brainstorm and I Mell Comer. Our guest today is Dr. Jonathan Roseanne, co-founder of the McCann Center for Brain Health and Professor of Neurology at Harvard. Welcome, Dr. Roseanne. We're delighted to have you.

Dr. Rosand (01:02):

I'm so delighted to be here. It's a great pleasure.

Meryl Comer (01:05):

You're a world renowned scientist. Your work spans vascular disease, genetics, neurocritical care. What inspired you and Dr. Rudy Tanzi to focus on the integration of neurology and psychiatry with the goal to stop brain diseases before they start?

Dr. Rosand (01:25):

I have to say it really goes back to my bedside experience. I'm a neurointensivist and neurointensivist takes care of the worst of the worst brain injuries, bad strokes, bleeding in the brain and many of our patients never make it. And those who do can survive with substantial disability. But one of the key and most satisfying aspects of Neurocritical Care is you develop relationships with patients and their families. And so my work in preventing brain disease really originates in my experience with patients and families who survived and go on to develop other challenges. And so I decided the ICU was the place to start with prevention. And specifically that targets were depression, anxiety, and PTSD turns out that our patients are at high risk for developing those conditions after they survive. And not only our patients, but their partners, their caregivers, their loved ones. One of the things I've learned in the clinical encounter of the patients whom I see in our Brain health program, when a patient sees me and cries, I know that we've really gotten somewhere.

Dr. Rosand (02:37):

What those tears often represent is a recognition that there has been some pain or trauma tied up in their relationship with the healthcare system, in the relationship with the person maybe they cared for and the humiliation at some point that their loved one or they suffered at the hands of the healthcare system. And it's often, if I'm seeing a man and his female partner, it's often the emotional openness of the female partner that allows us to get access to that in the man. And look how you scale this, I don't know, but I'm confident that this is at the root of a lot of our challenges and prevention. And we began to study this and what we found was that if an individual patient develops one of these conditions three months, six months out the like it is very high that their partner will as well. So we had the idea, let's figure out how to prevent this from happening in the first place. But that's really where it all started. And when ultimately I began having conversations with my dear friend Rudy Tanzi,

Meryl Comer (03:41):

Just so we're clear on terms our brain health and brain care essentially the same thing.

Dr. Rosand (03:47):

The answer is no, but a simple answer isn't sufficient. We came to brain care quite a bit later, about four or five years ago because when we launched our prevention program, and what I mean by that is the program that we began offering to individuals who were at high risk for developing dementia or stroke and were normal otherwise and wanted to learn what to do. And we developed what was called the Brain Health score. And what I learned in talking to patients was that brain health is a complicated, confusing term. And I'll give you two examples. The first is that I had a patient whose son has schizophrenia, adult son, and she asked me after we talked about brain health, well does that mean that my son, because schizophrenia isn't curable, will never be able to have a healthy brain? And that's just not the kind of question you want to have to answer or stimulate in anybody or raise.

Dr. Rosand (04:48):

Another related version of that question which came up even more often was, well doctor, you tell me that my husband's had a stroke and when you have a stroke, a part of your brain dies. Does that mean that his brain will never be as healthy as mine? And so what we learned in conversations like that was that health so often is viewed by all of us as a yes or no condition, and we wanted to get away from that. And that's how it became clear to us that really what we were after was answering the question, what can I do to take care of my brain so I don't end up like my mother, my brother, my sister, my father. And so we pivoted to brain care really in order to give the opportunity of agency to anybody who was curious to do what they could to prevent brain disease.

Meryl Comer (05:38):

So psychologically scores of any kind or loaded and intimidating, especially when it's attached to the brain. So how does the brain care score approach get around that issue and sort of manage the skeptics?

Dr. Rosand (05:52):

We learned that the key to engaging people, to welcoming people, making people feel welcome is giving many choices because the journey of lifestyle change. So what the Brain Care score is about is all the choices you can make every day that can substantively reduce your risk of dementia, stroke, or depression. And frankly, also heart disease, lung cancer, breast cancer, colorectal cancer, you name it in the future. So in order for the Brain Care score to be successful, it has to be something that each of us can take and own for ourselves. And that ownership starts with our making a choice. And so what we learned about the Brain Care score and overcoming intimidation was putting in front of people and letting everybody ask questions and ultimately land on what they wanted to start working on.

Meryl Comer (06:43):

You advocate for integrating psychiatric and neurological conditions in both research and clinical care, but how do you propose overcoming those institutional barriers? I mean, these are traditionally siloed medical systems.

Dr. Rosand (06:57):

I think you're asking a really important question that goes to the heart of our healthcare system, which is our healthcare system is enormously complex. It accounts for in the United States, at least roughly a fifth of our GDP. And the system has grown up to meet a lot of different needs, not just the needs of ourselves as patients, but all sorts of other needs to focus on how we can best help people. You have to step out of the system and really focus on the experiences that each of us has every day as patients, as caregivers, changing the system so that for example, mental health comes to be viewed as it should be as just part of the continuum of healthcare will take time. Because first we have to open everyone's eyes to what the experience of quote unquote mental health is and how we understand it to be simply part of brain health. And then through that translation, I think the ideas will come about how best to integrate the actual healthcare system to support that vision. But I think this is going to start from the ground up. The

Meryl Comer (08:03):

Healthcare system when it comes to the brain remains largely reactive. It's treating brain disease after onset rather than proactive. So you're trying to shift a paradigm.

Dr. Rosand (08:14):

Yes. And I tell you, I mean it's worked for the heart, right? I think now a lot of primary care is built around preventive care for heart disease, trying to keep as many people from ever developing heart disease. That's our goal for brain disease. And the truth is that the reactive care model that we have is so effective. I mean, we have such extraordinary neuroscience and such extraordinary psychiatry that we've got to essentially look at a different infrastructure for preventing brain disease because our goal is to make it so that nobody ever has to see a neurologist or a psychiatrist in the future.

Meryl Comer (08:52):

There are not enough neurologists to go around right now, and the waiting lists are long. So what does it take to put brain care at the center of primary care if you're really trying to transform prevention?

Dr. Rosand (09:05):

One of the lessons we've learned in the past four years is that the primary care system in this country, and frankly most other countries, is so overloaded that opportunities for innovation are quite limited. So after recognizing that, it became clear to us that the answer was going directly to individuals direct to consumer, if you will. And so we've built around the Brain care score approach, a group of collaborators that actually span the globe, and we call ourselves the Global Brain Care Coalition. But the central approach is start in communities before people ever reach a doctor's office. That's how we think that we can revolutionize primary care. And it's going to be before individuals meet their PCP. Frankly,

Meryl Comer (09:55):

Let's stay global for a moment. A reduction in health disparities is actually built into the advocacy of us against Alzheimer's. Is the brain care score designed to be applicable to all populations?

Dr. Rosand (10:09):

It's designed to be applicable to everyone everywhere. What I've learned is that dementia and stroke and depression are experienced differently in every culture. But the fundamental drama, the loss of dignity, the powerlessness, the hollowing out of somebody you care about that is fundamental everywhere. In Kenya, for example, I heard a lot about how that's the result of witchcraft. You know, in other societies they have other ways of understanding it, but it doesn't matter. It doesn't matter. We have the science and then we bring the science to you and you figure out how you want to incorporate it. The Rain Care score is like a template. Our vision is that the brain care score is so simple and we hope so trustworthy that it's a common starting point, but it will probably change in response to the needs of the individual community that adopts it.

Meryl Comer (11:01):

So Dr. Rose sound, when I listen to you, I hear you saying to me as an individual, own your own health. Is that right?

Dr. Rosand (11:09):

Agency in our view is at the core of Primary Healthcare, our own agency. And each of us has to discover how to do that for ourselves.

Meryl Comer (11:19):

I often feel that too many developers of online health trackers make you feel like you're working for them by requesting too much information. So most of us never complete round one of the program. Look, doctor behavior modification isn't easy,

Dr. Rosand (11:34):

As my grandmother would say. You're telling me? Yes. Behavior modification I think is the biggest challenge of all. And it's one of the reasons, frankly, I think we have not seen the kind of innovation in preventive care in primary care that we would all like to see because the black box, if you will, that we need to open up of translating what we know, IE that 45% of dementia, that 75% or more of stroke and 35% or more of depression is attributable to factors that you and I can modify for ourselves.

Meryl Comer (12:10):

So doctor, are you telling me that 40 to 60% of what's going to happen to me in my lifetime is preventable and under my control at some level?

Dr. Rosand (12:21):

Yes. Isn't that amazing?

Meryl Comer (12:23):

I started too late.

Dr. Rosand (12:24):

No, it's never too late. No, that's the other thing we've learned. So we've done all sorts of analyses of large cohorts of individuals, and the truth is, the higher your brain care score, the lower your risk of these chronic diseases, regardless of whether you measure the brain care score when you're under 50, when you're under 65, or whether you're under 80 or even over 80. So it does make a difference. So it's never too late. I think that's important.

Meryl Comer (12:52):

There are 12 items on the brain care score. Some are intimidating. Where do I have to start?

Dr. Rosand (12:58):

Why don't I tell you the story of a patient of mine whom I saw about two months ago, most recently when she first came into my office, she was in her early sixties and was there because her mother had Alzheimer's. And she was so devastated every time she went to see her mother because it wasn't her mother. Alzheimer's had robbed her mother of her dignity. And what troubled this patient more than anything was how upset her mother would be if she were able to see herself now, given how proud she had been given how independent she had been given, how extraordinarily capable she had been. And that pain was so acute for this patient that she had to do something. And so she was in the office almost for her mother, not for herself. And she'd heard about the brain care score, she'd heard about our work and the first thing she says to me after telling me the story of her mother and why she's here is I know I have to lose weight.

Dr. Rosand (13:59):

I don't want to hear about it. And that was the clue that we wouldn't be talking at all about weight or BMI. And the lovely thing about the Brain Care score is there are 12 items. And so each of those items is connected to the other items. So you can start anywhere. And we found that for her, the best first choice was to change her physical activity routines. And she had a friend who she could do it with. We often will come to this from a place of fear and anxiety and how by offering choice and by allowing ourselves to articulate what we're scared about, I was able to help her find and land upon the spot that was just right for her to get started. And what's so exciting, and this is the rule, not the exception, is she came back in six months, not only having really radically changed her physical activity and exercise regime, she changed her diet and then she decided to work on her weight and she'd already made progress in each case. That's the goal of brain care score is to engage people and then to help them to take the next step once they've had success with the first step,

Meryl Comer (15:08):

Just focusing on neurologic conditions like Alzheimer's and other dementias, frontal temporal Lewy bodies independent of psychiatric diseases. Make sense biologically.

Dr. Rosand (15:21):

So I think what that tells us is we need to listen to our patients biologically it doesn't make sense to separate a mental health approach and a neurological health approach, either it's it's one and the same in the case certainly of Alzheimer's, but it's not just Alzheimer's. It's many, many, many other conditions. We seek to help people see that by working on your brain care, you will be tackling not only the risk of traditional neurologic diseases, but also traditional psychiatric diseases. 'cause the brain is one organ, the biology just isn't that complicated. That's our message and hopefully it will become easier for the healthcare system to catch up. But I can tell you many, many, many of colleagues of mine, both in psychiatry, neurology, share this view.

Meryl Comer (16:09):

How does the Quantified Health Movement with its focus on real-time data with wearable technologies align with your efforts to improve brain health?

Dr. Rosand (16:20):

I think it does appeal to a certain personality. Where I do have a concern is that it plays into a larger movement in brain health where if it doesn't cost money, then maybe it's not helpful. If it's not super advanced technology, maybe it's not helpful. And what I find is that for very sophisticated individuals who do their own research and are very much invested in this movement, for some reason, it's much harder for them to pay attention to the boring stuff that we know is proven. And when we've done some back of the envelope calculations and looked at certain populations that we care for who have particularly bad blood pressure control, we can model how many cases of cognitive decline would be prevented if we only went from let's say 40% hypertension control rates to 50% hypertension control rates. My biggest concern is with our fascination for technology, with our fascination for buying all of these brain health supplements, we are losing track of what we know really works. 'cause it's boring.

Meryl Comer (17:30):

Sorry to touch on today's politics, but when research is being cut back or to funded treatments for patients across diseases will be set back. Is that why prevention is more critical than ever?

Dr. Rosand (17:42):

That's a very, very important question because ultimately prevention is about each of us making decisions every day about what we're going to do. We've worked with actually us against Alzheimer's and we've also learned from organizations like Gallup how to do this. But we've done our own surveys of adults across the US and when we ask, have you or your intimate partner had close personal experience with dementia stroke 75% or more? Say yes, when you add in depression, that goes to almost a hundred percent. So how do we take advantage of the crisis? Here is an experience that we have in common. Here's an experience whether you're politically on the left or the right or up or down, you have had this fundamental experience in some way. And I have never met anyone who's had experience with dementia or stroke who doesn't stop and doesn't reflect on what it was like and how there's some aspect of the upset that's about watching someone you care about lose their dignity. This is something we can offer to everyone regardless of cultural background, political background, you name it.

Meryl Comer (18:55):

If I'm willing to focus on the brain care score, can I fail?

Dr. Rosand (18:59):

Another great question. No, but failure is in your own mind. So what would success look like? Not only raising your score, not only living a life longer, free of dementia, stroke and depression, but also sharing the score with your friends, helping others. Because altruism, it turns out, is really good for the brain. And what this offers is a way to be helpful, to be useful to the people you love, people you care about, even people you don't care about, but to have a sense of contributing to society. I think we're all thirsty for that. And the good news is meaning and purpose in life is on the brain care score. Our hope is that by bringing the brain care score in early, it's also an opportunity for people to learn about these diseases and begin to understand enough about them so that the stigma is maybe something they begin to recognize on their own. The sense of our agency, that's the best antidote to shame and the best antidote to guilt.

Meryl Comer (20:03):

I have to admit that I took the Brain Care score with me on my way to a stress test with my cardiologist and asked him to evaluate for me the brain care score. And he said to me, well, there's nothing new. We've been doing this. And I said, well, thank you doctor. That's good to know. Are you surprised by that reaction?

Dr. Rosand (20:25):

I'm immensely gratified because I think that one of the challenges that we've learned in the healthcare system is that so often the experience of the patient is going to a specialist asking their opinion and the specialist poo-pooing it, whatever they bring forward. So our goal with a brain care score was for you to have that very experience no matter which doctor you went to, if you have relatives in the healthcare profession, we wanted people to say, of course everybody knows that now. It's not novel. Your trust in it is not sacrificed. Not at all. I'll just give you another anecdote. I'm a big fan of meditation. I'm convinced that regular meditation reduces your risk of a whole host of chronic diseases, dementia, Alzheimer's included. For about two years. I wanted meditation on the brain care score, but I took the brain care score to a few of my colleagues whom I respected, and they kept on stumbling over meditation. Is there really data for that? And it became clear to me that by removing meditation, there was no more stumbling. Gets to that trusting piece. People who listen to this podcast, I hope will investigate meditation and will adopt it, and that's great, but the brain care score has to be unassailable.

Meryl Comer (21:43):

Doctor, if you could redesign medical education from scratch to better prepare clinicians for the future of brain health, what would you change and how would you teach them?

Dr. Rosand (21:53):

I would start long before medical school. I like to talk about the analogy of driver's ed. When each of us turns 16 or 18, we will go through some form of driver's ed and get our license. And our assumption is that that's all the formal training you need to be able to navigate any road you travel in the future. I think the opportunity for medical education has to start with everybody getting, let's imagine the Brain Care score. It's like your basic literacy in your own healthcare. And so imagine now that every time a patient walks into a clinician's office, they both have their brain care score, driver's license, so fundamental set of tools, languages, perspectives that each has. It's a way to begin a common language for conversation. I think that's where we want to start. Each of us has agency, each of us can drive a car.

Meryl Comer (22:48):

I actually love the analogy because they both reflect independence and agency. Just fascinating.

Dr. Rosand (22:54):

The Brain Care score is really simple. It's meant to be simple. And just like your cardiologist said, everybody knows this, but behind that statement, everybody knows this are hundreds of millions, if not billions of dollars spent by the US taxpayer, the United Kingdom taxpayer, the French taxpayer, you name it. We've spent billions of dollars to learn this stuff. And those billions of dollars that we've spent pale in comparison to the amount of money that we could save if everybody everywhere leveraged the Brain Care score. And we really did reduce the number of new cases of Alzheimer's, dementia, depression, cancer, heart disease, stroke, the healthcare savings would be dramatic. And so I just want to highlight that this Simple Brain Care score is one of the greatest products possible of all of that research funding that's been spent over the last three decades. And so it's a testament to all of the work of those scientists and the vision of the senators and congressmen over the years who maintained a devotion to funding medical research in the us. It's one of the greatest gifts to humanity. And I think right now in this time of crisis, it's important to remember that

Meryl Comer (24:13):

And it's accessible to all

Dr. Rosand (24:15):

Everybody. Yes, our parents and our grandparents are responsible for this gift to us.

Meryl Comer (24:21):

Our guest has been Dr. Jonathan Roseanne, co-founder of the McCann Center for Brain Health and Professor of Neurology at Harvard. You can find a link to the Brain Care score in the description of today's podcast. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.

Close (24:43):

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