BrainStorm
Brain Health Journey: Empowering Patients and Providers in Alzheimer's Care
Brain Health Journey: Empowering Patients and Providers in Alzheimer's Care
In this episode of BrainStorm, host Meryl Comer leads part 2 in a series on UsAgainstAlzheimer's newly released Brain Health Journey resources. The discussion with Dr. Diana Summanwar, a practicing family physician and implementation scientist, and Chris Miller, project manager for UsAgainstAlzheimer's Brain Health Journey, centers on the challenges facing primary care physicians in detecting and diagnosing Alzheimer's disease early.
Chris Miller describes the core problem: there is no clear pathway for patients or care partners to navigate brain health concerns, and primary care physicians are often under-resourced to detect mild cognitive impairment, while specialists face overwhelming wait times of up to a year. Dr. Summanwar speaks to the realities of physician burnout and the growing demands placed on primary care. The conversation explores how a new suite of tools aims to bridge the gap between patient concern and accurate Alzheimer's diagnosis.
The episode touches on practical tips for families preparing for a doctor's appointment and the complexity of mixed dementias. This episode is for anyone concerned about their brain health, or the brain health of a loved on.
Brain Health Journey resources are available at mybrainguide.org/journey.
Dr. Summanwar (00:00):
Just as we check your blood pressure, because we don't want to miss it, because we want to intervene early, we are going to check your memory once a year. We do this for everyone. There's nothing particularly about you or, or maybe, but we want to do this because we don't want to miss, because there are things that we can do to prevent the progression.
Introduction (00:19):
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24-year caregiver, an Emmy Award-winning journalist, and the author of the New York Times bestseller, Slow Dancing with a Stranger.
Meryl Comer (00:39):
This is Brainstorm, and I'm Meryl Comer. In part one of our series on Us Against Alzheimer's newly released brain health journey, we focused on a suite of resources designed to empower people concerned with elevated risk, those living with Alzheimer's, as well as current and former care partners. Today, in part two, we hear from Chris Miller, Brain Health Journey Project Manager that developed these tools, and Dr. Diana Sumanwar, a practicing family physician who served on the expert advisory group. Welcome to you both. , Chris, let me start with you. Tell us about the development of Us Against Alzheimer's brain health journey that was designed to help providers move patients from concern to accurate diagnosis.
Chris Miller (01:37):
Yeah, thank you so much, Meryl. Really appreciate being here and the opportunity to highlight these resources. So prior to us against Alzheimer's, , I spent nearly five years at the Association of American Medical Colleges, where my work was really rooted in and focused on clinical innovations at the intersection of primary care and specialty care. We've developed the brain health journey in response to several problems, and perhaps above all, there's no clear pathway for patients or their care partners to navigate concerns in their brain health. And on the clinical side, which of course is our focus today, we, we know that there are underdiagnoses, missed diagnoses, and long waits. And there's a lot driving that problem on the primary care side, which Deanna is very well-equipped to talk about, , busy PCPs may lack the capacity, knowledge, or resources to detect and diagnose, , mild cognitive impairment or dementia due to Alzheimer's disease, especially earlier on.
Chris Miller (02:34):
And on the specialty side, specialists are already overwhelmed, have long wait times. And between primary care and specialty care, there are disconnects and a lack of coordination and referral from PCP to specialist. , So this is a, , something that's very important to me in improving healthcare in this respect. And I have a deep personal connection, , to Alzheimer's personally. My grandfather had the disease and, , passed in 2010, , and I got to see very closely, , the, its impact on him, , my grandmother, and, , my aunt, my mom as care partners to him. , And that's a big part of the, the reason, , behind my time at USA two and, and the work that we're doing here. And the tools that we're developing, on the provider side really aim to give a stepwise framework to allow and to enable, early detection of Alzheimer's, which is really led by primary care.
Chris Miller (03:30):
We know that PCPs are the frontline of the healthcare system, , and so we thought it very important that the framework be grounded there.
Meryl Comer (03:37):
Dr. Summanwar, your clinical interest focus on pediatric medicine, women's health, preventative care, and chronic disease management. But one of your research areas is physician burnout. Can you share some of the pressures on doctors today?
Dr. Summanwar (03:56):
Sure. So as we want to improve the health for our patients and our populations, we have identified that prevention is key to that. And where other than primary care to initiate a lot of these interventions, what has happened is that slowly, slowly, as we realize that we need to intervene early, we keep asking one more thing to primary care. And that one more thing has become multiple, I don't know. And I don't think it's a lack of desire, , for PCPs to really provide the best care that they can for the patient, but it's more of a system gap. There is more, not only of a knowledge gap, but there are certain factors that make it harder for the PCPs to really do what they could do best in all areas, but particularly in brain health. I am an implementation scientist in addition to a primary care physician.
Dr. Summanwar (04:57):
And my work focuses on creating interventions that improve patient outcomes, but that do not increase the burden to providers. And I think we need to find that spot so that we can create interventions that are sustainable and not just something that we do for a few months and then just, you know, dies out.
Meryl Comer (05:21):
As a family care doctor, what motivated you to be more engaged in Alzheimer's and dementia care?
Dr. Summanwar (05:29):
I really see it as the, the brain health is the outcome of a lot of preventative measures and a lot of overall health and prevention lifelong. So it's, it's not only something that starts in the, you know, at 65 or at 50, but it's really the outcome of our behaviors, our lifestyle choices, the control of our chronic conditions. And that is all primary care, right? We have trained for that. We have trained to optimize chronic disease management, to really, you know, change lifestyle factors like smoking, alcohol use, so many of those factors, diet, exercise. So it, it really kind of puts everything together into a condition like our brain health is the outcome of, of all the things that we do through our life. So I think that it brings also primary care to the frontline, , that I think is really important because it's being otherwise, , condition of the specialist.
Dr. Summanwar (06:32):
But really to treat and prevent and prevent progression once it's there, we need to work 10, 20, 30 years before, right, before we see the symptoms and to really identify it early. So I, it really makes me passionate that as a primary care provider, I can do so much for my patients and families.
Meryl Comer (06:53):
Earlier, Chris brought up the point that currently the wait time to even get an appointment with a specialist can last up to a year. Do you ever foresee family care physicians managing the early diagnosis, which has become so critical now?
Dr. Summanwar (07:10):
Yes, I do. I do see that that has to be part of what we do. And it can be as simple as a dementia syndrome diagnosis. We should be able to move a diagnosis from specialist to primary care. So that once we have a diagnosis, we can take the severity of the condition and then decide whether this person truly needs to see a neurologist or not, for example. Because if we refer everyone that has a concern, then that's only going to make our wait times longer. Our goal is to refer the right patient to the right specialist. So that might be geriatrics, for example, or it might be someone that we really need to prioritize. Maybe someone with early mild dementia or cognitive impairment that really needs to make it to the neurologist in a couple of months rather than nine to 12 months.
Meryl Comer (08:06):
So Chris, that really brings up the point, the composition of your expert panel that you engaged. Who did you pull from to really have your advisory council?
Chris Miller (08:19):
Great question. And, and for all of these brain health journey resources, it was really important for us as an organization that we engaged, , the people that the res - these resources would be intended for. So on the lived experience side, we engaged a group of, of folks living with MCI due to Alzheimer's disease and, , current and former care partners. And for these resources, the provider-facing resources, , we engaged an expert group of approximately a, a dozen individuals, , of which Diana is one of them, , including family medicine, , nurses, social workers, , general, general neurologists and other specialists, as well as aging experts, , to engage in, in co-development of these resources. And this was quite a negotiation, , as Deanna mentioned, kind of finding the right balance between primary care and specialty care. , And there was some very healthy and constructive debate as we put together the stepwise framework.
Chris Miller (09:16):
And, , and it was so, so healthy to have that, , variety of perspectives and healthy disagreement, , where we could iterate over time. , We also worked with the human centered design firm to develop these, these resources, putting these ideas and, , sort of concepts into a nice, , a nice design that will be digestible and usable by a variety of audiences and, and helped us incorporate feedback over time too. , And our advisory group was so integral to, , to this effort, and we are, , very grateful for their, , for their perspectives and their collaboration.
Meryl Comer (09:55):
Dr. Sumon-Mar, the advances in medicine are coming very quickly, even in our field, which for many years was really filled with frustration and, , pain, but now it's gotten exciting with two disease modifying therapies that will slow disease progression. What is the burden on physicians to keep up with what's happening?
Dr. Summanwar (10:20):
Yeah. I, I think it's hard for everyone to keep up. , And it's particularly for providers that are not in the research area. , So I think that it's important to have a resource that can also update frequently. And as, you know, science advances that we can, , have certain locations, certain places online or, you know, other places where PCPs can get what they need in a short amount of time so that they can start modifying conversations as the science continues to advance. , And that's what we have seen, for example, with the blood-based biomarkers.
Meryl Comer (11:04):
Many times, the doctors will not diagnose, , Alzheimer's because they don't want to depress the patient because before they had nothing to offer. How do you feel about that? I mean, I think families really, we want doctors to just tell it like it is. , What do you see as that pressure and how do we get over that? <Laugh>
Dr. Summanwar (11:30):
Yes. Great question. , What I have seen is that now we have two sources of, of, of patients that can come from two sources. One is if they have concerns. If the family of the patient themselves have concerns, that's one, , part where we get them from. And the other one is, is if we are screening. Like everybody comes for their preventative visit and we do a screening test that is abnormal. And it's a slightly different conversation. And we are trying to normalize those conversations. It's like just as we check your blood pressure because we don't want to miss it, because we want to intervene early, we are going to check your memory once a year. We do this for everyone. There's nothing particularly about you or, or maybe, but we want to do this because we don't want to miss because there are things that we can do to prevent the progression in case we do, , we conclude that you have, , Alzheimer's disease or I me- memory concern.
Dr. Summanwar (12:31):
The other one is when they bring these concerns. So it depends, , how late we are in the progression of the disease that, that conversation will be different. , Sometimes it's early and we can, you know, still offer treatments. But what I see that is so important is whether they are eligible for, you know, disease modifying treatments or not, the lifestyle changes that we can implement and slow down the progression are significant. Like it can slow down progression by 45%. That is, is really huge. So I, I think that we have what you said, we can offer hope. We have those. The technology, the advances have changed the conversation. And we have more to offer. And I wish that all PCPs become more and more comfortable, you know, having these conversations just as we have many other difficult conversations in primary care that this is one more thing that is so important that we really don't want to miss it.
Meryl Comer (13:35):
There are so many independent risk factors for Alzheimer's and related dementias, , whether it is heart, whether it is, , diabetes. , There are multiple risk factors. Are doctors today connecting the risk factors to the need for people to be brain healthy?
Dr. Summanwar (13:55):
I, I think that the word is getting out there. That there is a lot we can do. I mean, many of the same things that we do to protect our heart actually protect our brain. So that's synergy. That's, you know, we keep doing what we are doing. We just need to increase maybe the speed and the clarity on how these changes will improve patients' outcomes.
Meryl Comer (14:18):
So Chris, tell us, , more about the provider framework within the brain health journey. , What's available to the providers? How can they find them? How do they use them?
Chris Miller (14:32):
We're releasing brain health journey resources sort of in a, in a waved approach. So, , the provider framework, which I'm mentioning is not yet available, but will be, , later this year. We're looking forward to, and as I mentioned earlier, , the provider framework sort of presents a structured stepwise approach, , that does center primary care as that initial entry point for detection and diagnostic evaluation, just as Deanna outlined in terms of a couple different sort of triggers, , to that, , to that, , sort of detection or diagnostic process. And so in this framework, primary care will lead that initial screening and assessment that will include medical and family history, validated cognitive testing, , laboratory imaging, blood-based biomarker, triage. And, and through that process, if possible, primary care, , does make a diagnosis of patients as cognitively unimpaired, , having, , mild cognitive impairment or dementia, , as well as, , sus - a suspected underlying cause like Alzheimer's disease, , like Dionna mentioned.
Chris Miller (15:39):
And it's that co-management and coordination with, , between primary care and specialty care that's really important, , and a key part of the collaboration between PCPs and specialists on this expert advisory group. , So we will have all of the brain health journey resources, , live on mybrainguide.org, , back/journey. And we chose to put them on mybrainguide.org because, , this is us against Alzheimer's, , sort of the largest consumer-facing tool, , for individuals that, , have concerns about their brain health, , and, and enable them to either detect on fol - or follow up on their concerns. , So these are all part of a, a unified experience, , with some complimentary tools living with one another.
Dr. Summanwar (16:26):
I think that the time spent listening to primary care, it is really val- valuable, , in developing this because, , you know, we are there at the front lines. There's multiple settings for primary care, and everyone is different. Each one is different. So I think just listening to that perspective is really rich. , Like, what are the challenges that we face, the barriers that we face, and how can we make it easy? How can we create a tool that helps, you know, a provider in a large setting compared to a, you know, maybe a solo provider or in a, a provider in a rural setting? So that was a challenge, but I think that finding that commonality among all those settings was really helpful.
Meryl Comer (17:17):
Dr. Seminar, what recommendations do you have for families to help them get the most out of their time with their doctors or providers?
Dr. Summanwar (17:27):
So a few things that are re- really helpful is to have all the medications that the patient takes, because we might not have access to all of them in our medical records. And some medication that are over the counter are actually not safe and not helpful for our brain. So having a list of medications and then documenting the concerns. Whether the concern, when the changes happen, is it a change in behavior? Is it a change in kind of some specific examples of what the family has noticed? And what was the baseline function for that particular person? We want to take some time to understand the change. We need some time to do a cognitive testing that may happen at the first visit or not, depending on, on the setting or the time that we have available. And then the family will expect also some lab work to rule out other conditions that can, , alter our memory and our cognition.
Dr. Summanwar (18:32):
We also want to know if there's any depression, anxiety, any other changes in the family, a big change in maybe moving to a different place in a, a loss of a loved one. Anything like can affect the overall, , emotional state also of the person is really important. And then we want to know if there's any hearing loss, any vision changes, anything else that affects how our brain interprets or what happens around is really key to understand if there's something else that, , we need to fix to help this person, you know, do better.
Meryl Comer (19:13):
So Chris, do you have a checklist, , on the other side for those who are concerned about their brain health? , That kind of checklist to take to the doctor?
Chris Miller (19:26):
We absolutely do. Yeah. It's an FAQ style structure across several different phases of the brain health journey as we've outlined it. And we'll ask questions just like you asked, Meryl, like, what do I take to the provider? What will make, , my appointment easier? And, , include answers just like Deanna shared about medication lists and, , behavioral patterns and, , things that have changed at home. And so, , with that resource, which we, we really see as complimentary to what we, what we're doing on the provider side here, so that we can enable sort of all parties involved to really empower the folks that are experiencing these cognitive changes, , to take charge of their care journey. , All of these resources are getting at, , what you can provide to, to patients to, to better support them through this process.
Meryl Comer (20:17):
Doctor with this exciting new developments with biomarkers, we're also finding that it's not always Alzheimer's. Alzheimer's is the most popular form of dementia, but there are Lewy bodies that goes with Parkinson's. There is frontal temporal. And now we're finding that many people have more than one type of dementia. How does that complicate your role as a primary care physician?
Dr. Summanwar (20:48):
As we see, there are many causes for dementia, and it would be helpful if we get to that dementia syndrome or mild cognitive impairment. And if we don't have the exact cause, I think that's fine. We, we can start doing things from that standpoint, right? We can refer patients, for example, to care models, like the guide program, just by having a diagnosis. We can initiate lifestyle changes, and then we can, if, for example, Alzheimer's disease remains in our differential diagnosis, we can offer biomarker testing and see we identify that. We can offer imaging and see what we see in the imaging, whether we have a lot of vascular burden, for example, for that patient. And then based on those answers, we can try to prioritize that referral to the right specialist. I think patients are fine by understanding that we don't have all the answers, , by just keeping that conversation open.
Dr. Summanwar (21:47):
You know, this can have multiple causes. But I think it, it will take all of us, physicians, all healthcare providers and families and patients to, you know, be more open and say, you know, "I was diagnosed with this and I'm undergoing treatment or not. And this is where I am." And just, I think it makes us human, right? Just to open up and share our experiences.
Meryl Comer (22:13):
Chris, , one more time, show us where the patient and provider's access is for the brain, , health journey.
Chris Miller (22:21):
Yeah. , So everyone can go to mybrainguide.org/journey to find all brain health journey related resources. That's patient and care partner resources, that's provider resources. And we know that, , there's a lot changing in science and medicine, so we're committed to updating these on an ongoing basis, , to ensure they capture the latest advancements of the field, , periodically. So we will have much more to share in the future as well.
Meryl Comer (22:49):
Thank you so much. Our guests have been Dr. Diana Summanwar, a practicing family physician on the Expert Advisory Group. And Chris Miller, project manager for UsAgainstAlzheimer's, new released a Brain Health Journey for individuals concerned about their risk, families providing care, and for providers. And again, you can find the Brain Health Journey at mybrainguide.org/journey. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
Closing (23:25):
Subscribe to BrainStorm through your favorite podcast platform, and join us for new episodes on the first and third Tuesday of every month
About This Episode
In this episode of BrainStorm, host Meryl Comer leads part 2 in a series on UsAgainstAlzheimer's newly released Brain Health Journey resources. The discussion with Dr. Diana Summanwar, a practicing family physician and implementation scientist, and Chris Miller, project manager for UsAgainstAlzheimer's Brain Health Journey, centers on the challenges facing primary care physicians in detecting and diagnosing Alzheimer's disease early.
Chris Miller describes the core problem: there is no clear pathway for patients or care partners to navigate brain health concerns, and primary care physicians are often under-resourced to detect mild cognitive impairment, while specialists face overwhelming wait times of up to a year. Dr. Summanwar speaks to the realities of physician burnout and the growing demands placed on primary care. The conversation explores how a new suite of tools aims to bridge the gap between patient concern and accurate Alzheimer's diagnosis.
The episode touches on practical tips for families preparing for a doctor's appointment and the complexity of mixed dementias. This episode is for anyone concerned about their brain health, or the brain health of a loved on.
Brain Health Journey resources are available at mybrainguide.org/journey.
Transcript
Dr. Summanwar (00:00):
Just as we check your blood pressure, because we don't want to miss it, because we want to intervene early, we are going to check your memory once a year. We do this for everyone. There's nothing particularly about you or, or maybe, but we want to do this because we don't want to miss, because there are things that we can do to prevent the progression.
Introduction (00:19):
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24-year caregiver, an Emmy Award-winning journalist, and the author of the New York Times bestseller, Slow Dancing with a Stranger.
Meryl Comer (00:39):
This is Brainstorm, and I'm Meryl Comer. In part one of our series on Us Against Alzheimer's newly released brain health journey, we focused on a suite of resources designed to empower people concerned with elevated risk, those living with Alzheimer's, as well as current and former care partners. Today, in part two, we hear from Chris Miller, Brain Health Journey Project Manager that developed these tools, and Dr. Diana Sumanwar, a practicing family physician who served on the expert advisory group. Welcome to you both. , Chris, let me start with you. Tell us about the development of Us Against Alzheimer's brain health journey that was designed to help providers move patients from concern to accurate diagnosis.
Chris Miller (01:37):
Yeah, thank you so much, Meryl. Really appreciate being here and the opportunity to highlight these resources. So prior to us against Alzheimer's, , I spent nearly five years at the Association of American Medical Colleges, where my work was really rooted in and focused on clinical innovations at the intersection of primary care and specialty care. We've developed the brain health journey in response to several problems, and perhaps above all, there's no clear pathway for patients or their care partners to navigate concerns in their brain health. And on the clinical side, which of course is our focus today, we, we know that there are underdiagnoses, missed diagnoses, and long waits. And there's a lot driving that problem on the primary care side, which Deanna is very well-equipped to talk about, , busy PCPs may lack the capacity, knowledge, or resources to detect and diagnose, , mild cognitive impairment or dementia due to Alzheimer's disease, especially earlier on.
Chris Miller (02:34):
And on the specialty side, specialists are already overwhelmed, have long wait times. And between primary care and specialty care, there are disconnects and a lack of coordination and referral from PCP to specialist. , So this is a, , something that's very important to me in improving healthcare in this respect. And I have a deep personal connection, , to Alzheimer's personally. My grandfather had the disease and, , passed in 2010, , and I got to see very closely, , the, its impact on him, , my grandmother, and, , my aunt, my mom as care partners to him. , And that's a big part of the, the reason, , behind my time at USA two and, and the work that we're doing here. And the tools that we're developing, on the provider side really aim to give a stepwise framework to allow and to enable, early detection of Alzheimer's, which is really led by primary care.
Chris Miller (03:30):
We know that PCPs are the frontline of the healthcare system, , and so we thought it very important that the framework be grounded there.
Meryl Comer (03:37):
Dr. Summanwar, your clinical interest focus on pediatric medicine, women's health, preventative care, and chronic disease management. But one of your research areas is physician burnout. Can you share some of the pressures on doctors today?
Dr. Summanwar (03:56):
Sure. So as we want to improve the health for our patients and our populations, we have identified that prevention is key to that. And where other than primary care to initiate a lot of these interventions, what has happened is that slowly, slowly, as we realize that we need to intervene early, we keep asking one more thing to primary care. And that one more thing has become multiple, I don't know. And I don't think it's a lack of desire, , for PCPs to really provide the best care that they can for the patient, but it's more of a system gap. There is more, not only of a knowledge gap, but there are certain factors that make it harder for the PCPs to really do what they could do best in all areas, but particularly in brain health. I am an implementation scientist in addition to a primary care physician.
Dr. Summanwar (04:57):
And my work focuses on creating interventions that improve patient outcomes, but that do not increase the burden to providers. And I think we need to find that spot so that we can create interventions that are sustainable and not just something that we do for a few months and then just, you know, dies out.
Meryl Comer (05:21):
As a family care doctor, what motivated you to be more engaged in Alzheimer's and dementia care?
Dr. Summanwar (05:29):
I really see it as the, the brain health is the outcome of a lot of preventative measures and a lot of overall health and prevention lifelong. So it's, it's not only something that starts in the, you know, at 65 or at 50, but it's really the outcome of our behaviors, our lifestyle choices, the control of our chronic conditions. And that is all primary care, right? We have trained for that. We have trained to optimize chronic disease management, to really, you know, change lifestyle factors like smoking, alcohol use, so many of those factors, diet, exercise. So it, it really kind of puts everything together into a condition like our brain health is the outcome of, of all the things that we do through our life. So I think that it brings also primary care to the frontline, , that I think is really important because it's being otherwise, , condition of the specialist.
Dr. Summanwar (06:32):
But really to treat and prevent and prevent progression once it's there, we need to work 10, 20, 30 years before, right, before we see the symptoms and to really identify it early. So I, it really makes me passionate that as a primary care provider, I can do so much for my patients and families.
Meryl Comer (06:53):
Earlier, Chris brought up the point that currently the wait time to even get an appointment with a specialist can last up to a year. Do you ever foresee family care physicians managing the early diagnosis, which has become so critical now?
Dr. Summanwar (07:10):
Yes, I do. I do see that that has to be part of what we do. And it can be as simple as a dementia syndrome diagnosis. We should be able to move a diagnosis from specialist to primary care. So that once we have a diagnosis, we can take the severity of the condition and then decide whether this person truly needs to see a neurologist or not, for example. Because if we refer everyone that has a concern, then that's only going to make our wait times longer. Our goal is to refer the right patient to the right specialist. So that might be geriatrics, for example, or it might be someone that we really need to prioritize. Maybe someone with early mild dementia or cognitive impairment that really needs to make it to the neurologist in a couple of months rather than nine to 12 months.
Meryl Comer (08:06):
So Chris, that really brings up the point, the composition of your expert panel that you engaged. Who did you pull from to really have your advisory council?
Chris Miller (08:19):
Great question. And, and for all of these brain health journey resources, it was really important for us as an organization that we engaged, , the people that the res - these resources would be intended for. So on the lived experience side, we engaged a group of, of folks living with MCI due to Alzheimer's disease and, , current and former care partners. And for these resources, the provider-facing resources, , we engaged an expert group of approximately a, a dozen individuals, , of which Diana is one of them, , including family medicine, , nurses, social workers, , general, general neurologists and other specialists, as well as aging experts, , to engage in, in co-development of these resources. And this was quite a negotiation, , as Deanna mentioned, kind of finding the right balance between primary care and specialty care. , And there was some very healthy and constructive debate as we put together the stepwise framework.
Chris Miller (09:16):
And, , and it was so, so healthy to have that, , variety of perspectives and healthy disagreement, , where we could iterate over time. , We also worked with the human centered design firm to develop these, these resources, putting these ideas and, , sort of concepts into a nice, , a nice design that will be digestible and usable by a variety of audiences and, and helped us incorporate feedback over time too. , And our advisory group was so integral to, , to this effort, and we are, , very grateful for their, , for their perspectives and their collaboration.
Meryl Comer (09:55):
Dr. Sumon-Mar, the advances in medicine are coming very quickly, even in our field, which for many years was really filled with frustration and, , pain, but now it's gotten exciting with two disease modifying therapies that will slow disease progression. What is the burden on physicians to keep up with what's happening?
Dr. Summanwar (10:20):
Yeah. I, I think it's hard for everyone to keep up. , And it's particularly for providers that are not in the research area. , So I think that it's important to have a resource that can also update frequently. And as, you know, science advances that we can, , have certain locations, certain places online or, you know, other places where PCPs can get what they need in a short amount of time so that they can start modifying conversations as the science continues to advance. , And that's what we have seen, for example, with the blood-based biomarkers.
Meryl Comer (11:04):
Many times, the doctors will not diagnose, , Alzheimer's because they don't want to depress the patient because before they had nothing to offer. How do you feel about that? I mean, I think families really, we want doctors to just tell it like it is. , What do you see as that pressure and how do we get over that? <Laugh>
Dr. Summanwar (11:30):
Yes. Great question. , What I have seen is that now we have two sources of, of, of patients that can come from two sources. One is if they have concerns. If the family of the patient themselves have concerns, that's one, , part where we get them from. And the other one is, is if we are screening. Like everybody comes for their preventative visit and we do a screening test that is abnormal. And it's a slightly different conversation. And we are trying to normalize those conversations. It's like just as we check your blood pressure because we don't want to miss it, because we want to intervene early, we are going to check your memory once a year. We do this for everyone. There's nothing particularly about you or, or maybe, but we want to do this because we don't want to miss because there are things that we can do to prevent the progression in case we do, , we conclude that you have, , Alzheimer's disease or I me- memory concern.
Dr. Summanwar (12:31):
The other one is when they bring these concerns. So it depends, , how late we are in the progression of the disease that, that conversation will be different. , Sometimes it's early and we can, you know, still offer treatments. But what I see that is so important is whether they are eligible for, you know, disease modifying treatments or not, the lifestyle changes that we can implement and slow down the progression are significant. Like it can slow down progression by 45%. That is, is really huge. So I, I think that we have what you said, we can offer hope. We have those. The technology, the advances have changed the conversation. And we have more to offer. And I wish that all PCPs become more and more comfortable, you know, having these conversations just as we have many other difficult conversations in primary care that this is one more thing that is so important that we really don't want to miss it.
Meryl Comer (13:35):
There are so many independent risk factors for Alzheimer's and related dementias, , whether it is heart, whether it is, , diabetes. , There are multiple risk factors. Are doctors today connecting the risk factors to the need for people to be brain healthy?
Dr. Summanwar (13:55):
I, I think that the word is getting out there. That there is a lot we can do. I mean, many of the same things that we do to protect our heart actually protect our brain. So that's synergy. That's, you know, we keep doing what we are doing. We just need to increase maybe the speed and the clarity on how these changes will improve patients' outcomes.
Meryl Comer (14:18):
So Chris, tell us, , more about the provider framework within the brain health journey. , What's available to the providers? How can they find them? How do they use them?
Chris Miller (14:32):
We're releasing brain health journey resources sort of in a, in a waved approach. So, , the provider framework, which I'm mentioning is not yet available, but will be, , later this year. We're looking forward to, and as I mentioned earlier, , the provider framework sort of presents a structured stepwise approach, , that does center primary care as that initial entry point for detection and diagnostic evaluation, just as Deanna outlined in terms of a couple different sort of triggers, , to that, , to that, , sort of detection or diagnostic process. And so in this framework, primary care will lead that initial screening and assessment that will include medical and family history, validated cognitive testing, , laboratory imaging, blood-based biomarker, triage. And, and through that process, if possible, primary care, , does make a diagnosis of patients as cognitively unimpaired, , having, , mild cognitive impairment or dementia, , as well as, , sus - a suspected underlying cause like Alzheimer's disease, , like Dionna mentioned.
Chris Miller (15:39):
And it's that co-management and coordination with, , between primary care and specialty care that's really important, , and a key part of the collaboration between PCPs and specialists on this expert advisory group. , So we will have all of the brain health journey resources, , live on mybrainguide.org, , back/journey. And we chose to put them on mybrainguide.org because, , this is us against Alzheimer's, , sort of the largest consumer-facing tool, , for individuals that, , have concerns about their brain health, , and, and enable them to either detect on fol - or follow up on their concerns. , So these are all part of a, a unified experience, , with some complimentary tools living with one another.
Dr. Summanwar (16:26):
I think that the time spent listening to primary care, it is really val- valuable, , in developing this because, , you know, we are there at the front lines. There's multiple settings for primary care, and everyone is different. Each one is different. So I think just listening to that perspective is really rich. , Like, what are the challenges that we face, the barriers that we face, and how can we make it easy? How can we create a tool that helps, you know, a provider in a large setting compared to a, you know, maybe a solo provider or in a, a provider in a rural setting? So that was a challenge, but I think that finding that commonality among all those settings was really helpful.
Meryl Comer (17:17):
Dr. Seminar, what recommendations do you have for families to help them get the most out of their time with their doctors or providers?
Dr. Summanwar (17:27):
So a few things that are re- really helpful is to have all the medications that the patient takes, because we might not have access to all of them in our medical records. And some medication that are over the counter are actually not safe and not helpful for our brain. So having a list of medications and then documenting the concerns. Whether the concern, when the changes happen, is it a change in behavior? Is it a change in kind of some specific examples of what the family has noticed? And what was the baseline function for that particular person? We want to take some time to understand the change. We need some time to do a cognitive testing that may happen at the first visit or not, depending on, on the setting or the time that we have available. And then the family will expect also some lab work to rule out other conditions that can, , alter our memory and our cognition.
Dr. Summanwar (18:32):
We also want to know if there's any depression, anxiety, any other changes in the family, a big change in maybe moving to a different place in a, a loss of a loved one. Anything like can affect the overall, , emotional state also of the person is really important. And then we want to know if there's any hearing loss, any vision changes, anything else that affects how our brain interprets or what happens around is really key to understand if there's something else that, , we need to fix to help this person, you know, do better.
Meryl Comer (19:13):
So Chris, do you have a checklist, , on the other side for those who are concerned about their brain health? , That kind of checklist to take to the doctor?
Chris Miller (19:26):
We absolutely do. Yeah. It's an FAQ style structure across several different phases of the brain health journey as we've outlined it. And we'll ask questions just like you asked, Meryl, like, what do I take to the provider? What will make, , my appointment easier? And, , include answers just like Deanna shared about medication lists and, , behavioral patterns and, , things that have changed at home. And so, , with that resource, which we, we really see as complimentary to what we, what we're doing on the provider side here, so that we can enable sort of all parties involved to really empower the folks that are experiencing these cognitive changes, , to take charge of their care journey. , All of these resources are getting at, , what you can provide to, to patients to, to better support them through this process.
Meryl Comer (20:17):
Doctor with this exciting new developments with biomarkers, we're also finding that it's not always Alzheimer's. Alzheimer's is the most popular form of dementia, but there are Lewy bodies that goes with Parkinson's. There is frontal temporal. And now we're finding that many people have more than one type of dementia. How does that complicate your role as a primary care physician?
Dr. Summanwar (20:48):
As we see, there are many causes for dementia, and it would be helpful if we get to that dementia syndrome or mild cognitive impairment. And if we don't have the exact cause, I think that's fine. We, we can start doing things from that standpoint, right? We can refer patients, for example, to care models, like the guide program, just by having a diagnosis. We can initiate lifestyle changes, and then we can, if, for example, Alzheimer's disease remains in our differential diagnosis, we can offer biomarker testing and see we identify that. We can offer imaging and see what we see in the imaging, whether we have a lot of vascular burden, for example, for that patient. And then based on those answers, we can try to prioritize that referral to the right specialist. I think patients are fine by understanding that we don't have all the answers, , by just keeping that conversation open.
Dr. Summanwar (21:47):
You know, this can have multiple causes. But I think it, it will take all of us, physicians, all healthcare providers and families and patients to, you know, be more open and say, you know, "I was diagnosed with this and I'm undergoing treatment or not. And this is where I am." And just, I think it makes us human, right? Just to open up and share our experiences.
Meryl Comer (22:13):
Chris, , one more time, show us where the patient and provider's access is for the brain, , health journey.
Chris Miller (22:21):
Yeah. , So everyone can go to mybrainguide.org/journey to find all brain health journey related resources. That's patient and care partner resources, that's provider resources. And we know that, , there's a lot changing in science and medicine, so we're committed to updating these on an ongoing basis, , to ensure they capture the latest advancements of the field, , periodically. So we will have much more to share in the future as well.
Meryl Comer (22:49):
Thank you so much. Our guests have been Dr. Diana Summanwar, a practicing family physician on the Expert Advisory Group. And Chris Miller, project manager for UsAgainstAlzheimer's, new released a Brain Health Journey for individuals concerned about their risk, families providing care, and for providers. And again, you can find the Brain Health Journey at mybrainguide.org/journey. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
Closing (23:25):
Subscribe to BrainStorm through your favorite podcast platform, and join us for new episodes on the first and third Tuesday of every month