BrainStorm
Brain Health Journey: Navigating Genetic Risk and the Power of Knowing
Brain Health Journey: Navigating Genetic Risk and the Power of Knowing
In part one of a series on UsAgainstAlzheimer’s Brain Health Journey host Meryl Comer is joined by Nancy Meserve, a lived experience advisor and APOE4 double-carrier, and Catherine Patterson, interim COO of UsAgainstAlzheimer's. Their conversation explores the newly launched Brain Health Journey — a suite of resources designed to help people at elevated Alzheimer's risk, those living with the disease, and their care partners navigate the road from concern to diagnosis.
You can find the Brain Health Journey at MyBrainGuide.org.
Nancy Meserve (00:00):
If people aren't willing to learn that they have a genetic risk, a high genetic risk, and to enroll in clinical trials, we're never going to find a cure for the disease.
Introduction (00:10):
Welcome to BrainStorm by UsAgainstAlzheimer'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 (00:30):
This is BrainStorm, and I'm Meryl Comer. Welcome to the new Frontier of Brain Health Advocacy. Not simply detecting risk, but helping people navigate what it means to know. In part one of our series on us against Alzheimer's newly released Brain health journey, we focus on a suite of resources designed to empower people concerned about elevated risk, those living with Alzheimer's disease, as well as current and former care partners. Joining us, Catherine Patterson, the COO of us against Alzheimer's, providing strategic and policy expertise across the organization to ensure that US against Alzheimer's achieves that goal. Also, joining us is Nancy Maser, who supported her mother during her five-year journey with Alzheimer's only to learn that she herself had two copies of APOE-4, the highest genetic risk factor for late onset Alzheimer's. She serves as a lived experience advisor for the Brain Health journey. Welcome to both of you Catherine, I'd love to start with you. You're up to big challenges. You formerly served as the co-executive director of City Health, which is an initiative targeting passage of evidence-based policies in the nation's 75 largest cities. So this is a big challenge. What systems and support issues did your team uncover when designing the Brain Health journey?
Catherine Patterson (02:12):
Meryl, it's so good to be with you. You know, for many of us who have been on this journey either with a loved one or are in this field, we know the landscape. We have missed diagnosis, we have delayed diagnoses. We also know that this is a disease that many, many people fear. And so the stigma and the shame around suspected brain changes really is pervasive. I'll just share a little bit about my own personal experience. I'm the proud daughter of Kathleen Dowd. In 2020, I noticed that she was experiencing some changes herself and her cognition and it took us from 2020 until 2025 to get an accurate diagnosis of Alzheimer's. Nobody should have to wait that long. And the Brain Health journey and its attenuating tools are really trying to help people get an accurate, timely diagnosis.
Meryl Comer (03:14):
Katherine, how has the trial landscape changed over the last few years and how did it influence the development of the suite of resources and tools in the brain health journey?
Catherine Patterson (03:27):
I think most importantly, clinical trials represent hope. I think a lot about folks like Nancy who have donated their time, their bodies to helping understand and develop new interventions for this disease. I will also say because the two drugs that are currently available on the market work best, when folks have been diagnosed earlier on in the disease, the brain health journey is really designed to help empower individuals to take charge of their cognitive health and get a diagnosis if that is appropriate for them. There is a saying that I'm sure you both have heard, but that brain equals time. Having more time to plan, to consider, to make judicious choices. And Meryl, to your, to your point earlier, to maybe enroll in a clinical trial.
Meryl Comer (04:26):
So Nancy, how would you describe your mother's five year Alzheimer's journey?
Nancy Meserve (04:32):
Well, from a positive point of view, and, and I think this people who have been care partners talk about this among themselves, it's a time of really deep connection. It's a time when my mother was able to share stories that were sometimes very juicy from her childhood. And also able to share some of her worries when she turned 80 which was in 2001. And she said, I think if scientists could open up my brain, it would be fascinating because I think it would look like a tangle of spaghetti. And she was not yet diagnosed, but she was aware that there were changes. She was probably in the MCI to mild stage then. And I said, yeah, I think you're right. That would be fascinating. Unfortunately among my siblings and among her my mother's family, the word Alzheimer's or dementia was never used.
Nancy Meserve (05:40):
My mother was the 10 of 11 children. Her four older sisters all developed symptoms consistent with vascular and Alzheimer's. She had brothers who had Parkinson's, cardiac disease. Her own mother died of a stroke at the age of 45. But my mother was very kind and she would say, well, so and so's getting a little wifty And so wifty could be a DSM diagnosis in our family. So I had to explain to her really how serious the heart damage was and that frankly she needed to be there and, and she wasn't likely to, to last long. My dad had died 20 years before, and she, she had forgotten twice that he died. So she was in a quite advanced stage and she died almost exactly three weeks later. But so I think part of what I tell people is every journey is different. You know, she might've forgotten that my dad had died, but she never forgot who she cared about and, and who she loved. And there was some stir. There was some drama with siblings, but, but I think knowing her really equipped me with the tools to face my own risk,
Meryl Comer (06:59):
Having lived close to the disease and being very sensitive to it, we're all sensitive to the stigma. Do you mind sharing your initial reaction to your personal genetic risk and its implications?
Nancy Meserve (07:14):
Well, I can picture where I was driving in Charlottesville listening to NPR, and there was an interview with a scientist talking about a OE four. I, I knew nothing about it. And he said, if people aren't willing to learn that they have a genetic risk, a high genetic risk, and to enroll in clinical trials, we're never going to find a cure for that disease. And I was like, well, that's good, but at least it doesn't apply to me. Two, two months later, my our kids had said, you got to do 23 and me. 'cause We probably have exotic ancestry. We, we absolutely don't, but and, and I know what it is. So we opened, I opened it up and there was, it's 2014. There was, there was no warning. It was just the first report is you have APOE4-4, and that gives you 15 times the risk of Alzheimer's.
Nancy Meserve (08:04):
And then underneath was a not helpful link that said, average age of diagnosis is 68. So I turned to my wonderful husband, Bob, and said, I'm going to have Alzheimer's dementia when I'm 68 in six years. And he was like, well, that's absurd. You know, you just went to grad school again two years ago. And I was like, no, no, it's a fact. And so there were months and, and the same sort of terror people have. It was like, this is written in stone. And I would wake up in the middle of the night and not be able to get to sleep. I didn't, I didn't tell our children for years. I didn't tell my siblings for more years. None of my three siblings have decided, good for you. We're not testing. So their stigma continues.
Meryl Comer (08:51):
So I will just share with you that I open the results of my test live on Nightline, afraid that I was going to drop dead of a heart attack, taking care of both my husband and my mother. And I ended up as a 3-4, which means I have an elevated risk. And we know now that if it's on the maternal side, everyone's risk profile becomes higher automatically. But you, there's a power in knowing, because you can be proactive and we'll get back to that. Nancy, just a quick question. You receive the information. What support and guidance were offered by the doctors post that diagnosis?
Nancy Meserve (09:38):
I don't have a diagnosis because I still test in the cognitively normal range. I don't actually have a neurologist. Someone in my clinical trial said, you don't have a neurologist. And it was like, well, do I need one right now? I have worked with my own doctor on doing various tests. My biggest support, frankly, was my husband who was like, I was like, Bob, I think I'm going to join a clinical trial. The first one I was in was the generations trial of a base inhibitor. I had to drive up to Georgetown and take pills every day. And he was like, go for it. I should give some reassurance to other people who have this news. So people would say, I'm 44, I just discovered I have two copies of this. And I would say, well, I'm 69 and I'm doing fine. And you have lots of time for this science and you're lifestyle to help you. And they would say, thank you so much.
Catherine Patterson (10:28):
This is an exciting time for the field. There are so many new innovations that are coming to market. For example, I can think of the blood tests that we now have available. This is making diagnosis easier for folks. You no longer have to get a pet amyloid scan, which is only located in certain areas of the country. Nor do you have to get a lumbar puncture. You can simply get blood drawn. That's incredible in terms of what that offers folks in terms of having access to a clinical trial. The other thing I find very exciting in the clinical trial space is the advent of digital cognitive assessments. This is also opening up the opportunity for individuals to participate and also for clinical trials to potentially co-locate themselves, not just in academic research areas, but also in communities as well. So as we continue to try to find effective treatments for all, I think these tools and innovations are democratizing that opportunity.
Meryl Comer (11:42):
So Nancy the two therapies on the market slow disease progression, you're now in your fourth year in the ahead 43 clinical trial of lecanamab, and that's for people with elevated levels of amyloid and normal cognition. What's the experience been like?
Nancy Meserve (12:05):
To, to sum it up, it's been a tremendous learning experience and partnership and something that I, and, and my husband Bob say, you are so lucky you got into this. You're, and taking that opportunity when I was in the generation's trial, I had a PET scan in 2017. I didn't learn the results of it till 2020, about a week before everything shut down in COVID because results aren't shared. I was told very in a very short conversation, well your PET scan did show elevated amyloid at the age of 65. And I knew enough that with two copies of a PE four and elevated amyloid, there was maybe a, a timeline that had started that was four to seven years before possible MCI. So it became very real to me that I didn't have a diagnosis, but I had a diagnosis of what is now called preclinical Alzheimer's disease.
Nancy Meserve (13:05):
In the same way that someone can have coronary plaques without having a heart attack. I had plaques in my brain. And so when the opportunity came to join the Ahead trial in Richmond, Virginia, which is for me, an easy drive I, I said absolutely. I have had two episodes of Aria. I've had in those two episodes, a total of three isolated micro hemorrhages. They didn't stop me from doing anything. I didn't, didn't change my cognition. So I tell people, your risks are well managed by people who know what they're doing in clinical trials. And I personally, it, the experience as someone with 8.44 made me a very strong advocate for, do not shut us out of trials. Do not shut us out of the conversation and do not shut us out of treatment because a treat, a risk can be managed. No treatment gives us no hope.
Meryl Comer (14:03):
So Catherine, when you designed these suites and you had your lived experience advisors, how many in the room were you surprised by the different care navigation experiences you heard?
Catherine Patterson (14:18):
I mean, I think when you talked to somebody either living with dementia or a care partner, you're going to hear a highly individualized experience because every case is different. That being said, there are themes, you know, delayed diagnoses a very, very long time from concern to, to accurate diagnosis, real challenges with navigating the system, who to talk to when, how can you get an appointment with a neurologist. We had an individual on our advisory group who cared for her mom for 22 years. And for much of that time, they did not know exactly what was going on. So to listen to her talk about her struggles with trying to identify exactly what was going on was just heartbreaking. There is power in sharing. There is an opportunity to connect and to also lift up solutions or opportunities to problem solve together. And I think what the Brain Health journey does is it takes this really difficult, almost thorny experience, and it tries to pave a path. It tries to provide a GPS of sorts for folks who are navigating this disease with the idea that more knowledge, more resources equals more power for the individual and for their family. Because I think if I, if I could just take away one thing from my experience is this is not just a diagnosis for the one person. It is a diagnosis for the family.
Meryl Comer (16:03):
So what did you come up with? What's in the suite if I go to the site?
Catherine Patterson (16:08):
So right now on my brain guide.org, we have the Brain Health Journey resources. The first resource that is already out and available to everybody is a simple map. It's a one page tool that shows the first five stages of the disease. And we do not say the word dementia. We do not say the word Alzheimer's on this particular map because what we heard from our lived experience advisors was, please do not make this scary. Please make it approachable, give me tools, empower me. We also made sure that the language is incredibly accessible. We are not trying to shut anybody out. We're trying to use approachable, easy to understand language so that anybody can pick up this map and start the conversation with their doctor. Right now, we've talked about kind of breaking down that stigma, breaking down the shame around having changes in your brain. The map itself is really trying to make this approachable easy and put the individual in the driver's seat.
Meryl Comer (17:13):
Nancy, it's often a lonely journey and complicated by family members who may mean well, but do not manage the day-to-day care. Would you like to offer a shout out to those who supported you so well?
Nancy Meserve (17:28):
Yes. my husband was a great support. Our children were our, our youngest, Jack was still at home in high school when my mother was living with Alzheimer's. And, and he, he reminded her of my dad. His middle name is George, his name was George. And so she would call him every day. She, she had been an executive secretary. She would call and ask what the stock market was doing, and he would go, okay, Grammy, you know, here's your stocks. And she would go, oh, it went down. He goes, no, you don't have to worry. It's fine. She, he was the, he was just the light in her life. So great shout out to them. I have a, a cousin who passed away 40 years to the day after he owned a bronze star in Vietnam as a helicopter pilot. Pete was the guy who she could always call and talk to, and he would come in and, and refit a her house so that she could have a laundry room upstairs. And he and his wife Joan were wonderful. Those are the people who get you through and you know, I'm sure all of you know, and sometimes is, I think you pointed out in your book, Meryl, the people you expect aren't, they aren't able or ready to do that. And I think we have to say that's okay. That, that it's a lot to, to deal with
Meryl Comer (18:48):
Catherine. You can map the brain health journey, but it struck me that when people try to connect with the provider and the payer system, the experience is often still frustrating, prolonged disheartening. Is that why strategically you built in a mirror initiative with an expert advisory group of doctors and providers, so you could have the conversation with them because the goal is to get people to the right care at the right time.
Catherine Patterson (19:20):
That's right. We had an incredible group of healthcare professionals work with us on the provider side of this framework. And the whole idea was if we're going to build demand on the patient's side having people be more comfort, comfortable talking about brain health, having people be more comfortable even expressing concerns around their cognition, there needed to be healthcare providers ready and willing and able to meet that demand. And so we have crafted a framework predominantly for primary care providers to help with the early detection and diagnosis, potential diagnosis of Alzheimer's disease. There. The frontline of healthcare providers is predominantly PCPs. So how are we preparing and equipping primary care providers with the tools they need to identify and then diagnose individuals? We also understand that there needs to be a partnership with specialists. There is always going to be that connection between primary care and neurologists. And so we are also building into this framework for that handoff. How are we helping elevate or escalate or flag individual patients who need to be seen more quickly with the hope that that will reduce those long wait times. I mean, sometimes individuals wait between nine and 12 months to get seen by a neurologist. And our goal here is to really, again, help triage patients and get them into the specialist office earlier so that they can be diagnosed more quickly.
Meryl Comer (20:55):
Well, you've designed it with such thoughtfulness. It's also a, a, in my mind, a sort of living, breathing document. Do you anticipate a aversion to two for the set of resources as you learn new things?
Catherine Patterson (21:11):
Absolutely. We are committed to staying abreast of the science. The science is moving so quickly. There are innovations almost every week. So us against Alzheimer's has committed to regularly updating the brain health journey, but also making sure that we are adding whether it's new resources, whether it is tweaks to the framework, particularly for healthcare providers as the scientific landscape changes and advances. I mean, my hope is that we are working towards a day where none of us have to even mention the word Alzheimer's. That we have either developed ways of slowing it so much, or we have developed a potential vaccine that my children, my grandchildren, don't have to face this disease. But until then, we will continue to update these tools and try to make this journey even a little bit easier for individuals who are facing cognitive impairment.
Meryl Comer (22:09):
I think we would all agree that we want to make it better for the next family and for the next generation. Our guest, Catherine Patterson, our COO at us against Alzheimer's, who is driving the brain health journey in all its dimensions. And Nancy, er, who serves as a lived experience advisor for the Brain Health journey. And Nancy, I hope many of us follow your example along with trials in the future. BrainStorm, we'll hear from us against Alzheimer's Brain Health Journey's Expert Advisory Group on their goal to help move the patients from personal memory concerns to accurate diagnosis. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
Close (22:59):
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About This Episode
In part one of a series on UsAgainstAlzheimer’s Brain Health Journey host Meryl Comer is joined by Nancy Meserve, a lived experience advisor and APOE4 double-carrier, and Catherine Patterson, interim COO of UsAgainstAlzheimer's. Their conversation explores the newly launched Brain Health Journey — a suite of resources designed to help people at elevated Alzheimer's risk, those living with the disease, and their care partners navigate the road from concern to diagnosis.
You can find the Brain Health Journey at MyBrainGuide.org.
Transcript
Nancy Meserve (00:00):
If people aren't willing to learn that they have a genetic risk, a high genetic risk, and to enroll in clinical trials, we're never going to find a cure for the disease.
Introduction (00:10):
Welcome to BrainStorm by UsAgainstAlzheimer'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 (00:30):
This is BrainStorm, and I'm Meryl Comer. Welcome to the new Frontier of Brain Health Advocacy. Not simply detecting risk, but helping people navigate what it means to know. In part one of our series on us against Alzheimer's newly released Brain health journey, we focus on a suite of resources designed to empower people concerned about elevated risk, those living with Alzheimer's disease, as well as current and former care partners. Joining us, Catherine Patterson, the COO of us against Alzheimer's, providing strategic and policy expertise across the organization to ensure that US against Alzheimer's achieves that goal. Also, joining us is Nancy Maser, who supported her mother during her five-year journey with Alzheimer's only to learn that she herself had two copies of APOE-4, the highest genetic risk factor for late onset Alzheimer's. She serves as a lived experience advisor for the Brain Health journey. Welcome to both of you Catherine, I'd love to start with you. You're up to big challenges. You formerly served as the co-executive director of City Health, which is an initiative targeting passage of evidence-based policies in the nation's 75 largest cities. So this is a big challenge. What systems and support issues did your team uncover when designing the Brain Health journey?
Catherine Patterson (02:12):
Meryl, it's so good to be with you. You know, for many of us who have been on this journey either with a loved one or are in this field, we know the landscape. We have missed diagnosis, we have delayed diagnoses. We also know that this is a disease that many, many people fear. And so the stigma and the shame around suspected brain changes really is pervasive. I'll just share a little bit about my own personal experience. I'm the proud daughter of Kathleen Dowd. In 2020, I noticed that she was experiencing some changes herself and her cognition and it took us from 2020 until 2025 to get an accurate diagnosis of Alzheimer's. Nobody should have to wait that long. And the Brain Health journey and its attenuating tools are really trying to help people get an accurate, timely diagnosis.
Meryl Comer (03:14):
Katherine, how has the trial landscape changed over the last few years and how did it influence the development of the suite of resources and tools in the brain health journey?
Catherine Patterson (03:27):
I think most importantly, clinical trials represent hope. I think a lot about folks like Nancy who have donated their time, their bodies to helping understand and develop new interventions for this disease. I will also say because the two drugs that are currently available on the market work best, when folks have been diagnosed earlier on in the disease, the brain health journey is really designed to help empower individuals to take charge of their cognitive health and get a diagnosis if that is appropriate for them. There is a saying that I'm sure you both have heard, but that brain equals time. Having more time to plan, to consider, to make judicious choices. And Meryl, to your, to your point earlier, to maybe enroll in a clinical trial.
Meryl Comer (04:26):
So Nancy, how would you describe your mother's five year Alzheimer's journey?
Nancy Meserve (04:32):
Well, from a positive point of view, and, and I think this people who have been care partners talk about this among themselves, it's a time of really deep connection. It's a time when my mother was able to share stories that were sometimes very juicy from her childhood. And also able to share some of her worries when she turned 80 which was in 2001. And she said, I think if scientists could open up my brain, it would be fascinating because I think it would look like a tangle of spaghetti. And she was not yet diagnosed, but she was aware that there were changes. She was probably in the MCI to mild stage then. And I said, yeah, I think you're right. That would be fascinating. Unfortunately among my siblings and among her my mother's family, the word Alzheimer's or dementia was never used.
Nancy Meserve (05:40):
My mother was the 10 of 11 children. Her four older sisters all developed symptoms consistent with vascular and Alzheimer's. She had brothers who had Parkinson's, cardiac disease. Her own mother died of a stroke at the age of 45. But my mother was very kind and she would say, well, so and so's getting a little wifty And so wifty could be a DSM diagnosis in our family. So I had to explain to her really how serious the heart damage was and that frankly she needed to be there and, and she wasn't likely to, to last long. My dad had died 20 years before, and she, she had forgotten twice that he died. So she was in a quite advanced stage and she died almost exactly three weeks later. But so I think part of what I tell people is every journey is different. You know, she might've forgotten that my dad had died, but she never forgot who she cared about and, and who she loved. And there was some stir. There was some drama with siblings, but, but I think knowing her really equipped me with the tools to face my own risk,
Meryl Comer (06:59):
Having lived close to the disease and being very sensitive to it, we're all sensitive to the stigma. Do you mind sharing your initial reaction to your personal genetic risk and its implications?
Nancy Meserve (07:14):
Well, I can picture where I was driving in Charlottesville listening to NPR, and there was an interview with a scientist talking about a OE four. I, I knew nothing about it. And he said, if people aren't willing to learn that they have a genetic risk, a high genetic risk, and to enroll in clinical trials, we're never going to find a cure for that disease. And I was like, well, that's good, but at least it doesn't apply to me. Two, two months later, my our kids had said, you got to do 23 and me. 'cause We probably have exotic ancestry. We, we absolutely don't, but and, and I know what it is. So we opened, I opened it up and there was, it's 2014. There was, there was no warning. It was just the first report is you have APOE4-4, and that gives you 15 times the risk of Alzheimer's.
Nancy Meserve (08:04):
And then underneath was a not helpful link that said, average age of diagnosis is 68. So I turned to my wonderful husband, Bob, and said, I'm going to have Alzheimer's dementia when I'm 68 in six years. And he was like, well, that's absurd. You know, you just went to grad school again two years ago. And I was like, no, no, it's a fact. And so there were months and, and the same sort of terror people have. It was like, this is written in stone. And I would wake up in the middle of the night and not be able to get to sleep. I didn't, I didn't tell our children for years. I didn't tell my siblings for more years. None of my three siblings have decided, good for you. We're not testing. So their stigma continues.
Meryl Comer (08:51):
So I will just share with you that I open the results of my test live on Nightline, afraid that I was going to drop dead of a heart attack, taking care of both my husband and my mother. And I ended up as a 3-4, which means I have an elevated risk. And we know now that if it's on the maternal side, everyone's risk profile becomes higher automatically. But you, there's a power in knowing, because you can be proactive and we'll get back to that. Nancy, just a quick question. You receive the information. What support and guidance were offered by the doctors post that diagnosis?
Nancy Meserve (09:38):
I don't have a diagnosis because I still test in the cognitively normal range. I don't actually have a neurologist. Someone in my clinical trial said, you don't have a neurologist. And it was like, well, do I need one right now? I have worked with my own doctor on doing various tests. My biggest support, frankly, was my husband who was like, I was like, Bob, I think I'm going to join a clinical trial. The first one I was in was the generations trial of a base inhibitor. I had to drive up to Georgetown and take pills every day. And he was like, go for it. I should give some reassurance to other people who have this news. So people would say, I'm 44, I just discovered I have two copies of this. And I would say, well, I'm 69 and I'm doing fine. And you have lots of time for this science and you're lifestyle to help you. And they would say, thank you so much.
Catherine Patterson (10:28):
This is an exciting time for the field. There are so many new innovations that are coming to market. For example, I can think of the blood tests that we now have available. This is making diagnosis easier for folks. You no longer have to get a pet amyloid scan, which is only located in certain areas of the country. Nor do you have to get a lumbar puncture. You can simply get blood drawn. That's incredible in terms of what that offers folks in terms of having access to a clinical trial. The other thing I find very exciting in the clinical trial space is the advent of digital cognitive assessments. This is also opening up the opportunity for individuals to participate and also for clinical trials to potentially co-locate themselves, not just in academic research areas, but also in communities as well. So as we continue to try to find effective treatments for all, I think these tools and innovations are democratizing that opportunity.
Meryl Comer (11:42):
So Nancy the two therapies on the market slow disease progression, you're now in your fourth year in the ahead 43 clinical trial of lecanamab, and that's for people with elevated levels of amyloid and normal cognition. What's the experience been like?
Nancy Meserve (12:05):
To, to sum it up, it's been a tremendous learning experience and partnership and something that I, and, and my husband Bob say, you are so lucky you got into this. You're, and taking that opportunity when I was in the generation's trial, I had a PET scan in 2017. I didn't learn the results of it till 2020, about a week before everything shut down in COVID because results aren't shared. I was told very in a very short conversation, well your PET scan did show elevated amyloid at the age of 65. And I knew enough that with two copies of a PE four and elevated amyloid, there was maybe a, a timeline that had started that was four to seven years before possible MCI. So it became very real to me that I didn't have a diagnosis, but I had a diagnosis of what is now called preclinical Alzheimer's disease.
Nancy Meserve (13:05):
In the same way that someone can have coronary plaques without having a heart attack. I had plaques in my brain. And so when the opportunity came to join the Ahead trial in Richmond, Virginia, which is for me, an easy drive I, I said absolutely. I have had two episodes of Aria. I've had in those two episodes, a total of three isolated micro hemorrhages. They didn't stop me from doing anything. I didn't, didn't change my cognition. So I tell people, your risks are well managed by people who know what they're doing in clinical trials. And I personally, it, the experience as someone with 8.44 made me a very strong advocate for, do not shut us out of trials. Do not shut us out of the conversation and do not shut us out of treatment because a treat, a risk can be managed. No treatment gives us no hope.
Meryl Comer (14:03):
So Catherine, when you designed these suites and you had your lived experience advisors, how many in the room were you surprised by the different care navigation experiences you heard?
Catherine Patterson (14:18):
I mean, I think when you talked to somebody either living with dementia or a care partner, you're going to hear a highly individualized experience because every case is different. That being said, there are themes, you know, delayed diagnoses a very, very long time from concern to, to accurate diagnosis, real challenges with navigating the system, who to talk to when, how can you get an appointment with a neurologist. We had an individual on our advisory group who cared for her mom for 22 years. And for much of that time, they did not know exactly what was going on. So to listen to her talk about her struggles with trying to identify exactly what was going on was just heartbreaking. There is power in sharing. There is an opportunity to connect and to also lift up solutions or opportunities to problem solve together. And I think what the Brain Health journey does is it takes this really difficult, almost thorny experience, and it tries to pave a path. It tries to provide a GPS of sorts for folks who are navigating this disease with the idea that more knowledge, more resources equals more power for the individual and for their family. Because I think if I, if I could just take away one thing from my experience is this is not just a diagnosis for the one person. It is a diagnosis for the family.
Meryl Comer (16:03):
So what did you come up with? What's in the suite if I go to the site?
Catherine Patterson (16:08):
So right now on my brain guide.org, we have the Brain Health Journey resources. The first resource that is already out and available to everybody is a simple map. It's a one page tool that shows the first five stages of the disease. And we do not say the word dementia. We do not say the word Alzheimer's on this particular map because what we heard from our lived experience advisors was, please do not make this scary. Please make it approachable, give me tools, empower me. We also made sure that the language is incredibly accessible. We are not trying to shut anybody out. We're trying to use approachable, easy to understand language so that anybody can pick up this map and start the conversation with their doctor. Right now, we've talked about kind of breaking down that stigma, breaking down the shame around having changes in your brain. The map itself is really trying to make this approachable easy and put the individual in the driver's seat.
Meryl Comer (17:13):
Nancy, it's often a lonely journey and complicated by family members who may mean well, but do not manage the day-to-day care. Would you like to offer a shout out to those who supported you so well?
Nancy Meserve (17:28):
Yes. my husband was a great support. Our children were our, our youngest, Jack was still at home in high school when my mother was living with Alzheimer's. And, and he, he reminded her of my dad. His middle name is George, his name was George. And so she would call him every day. She, she had been an executive secretary. She would call and ask what the stock market was doing, and he would go, okay, Grammy, you know, here's your stocks. And she would go, oh, it went down. He goes, no, you don't have to worry. It's fine. She, he was the, he was just the light in her life. So great shout out to them. I have a, a cousin who passed away 40 years to the day after he owned a bronze star in Vietnam as a helicopter pilot. Pete was the guy who she could always call and talk to, and he would come in and, and refit a her house so that she could have a laundry room upstairs. And he and his wife Joan were wonderful. Those are the people who get you through and you know, I'm sure all of you know, and sometimes is, I think you pointed out in your book, Meryl, the people you expect aren't, they aren't able or ready to do that. And I think we have to say that's okay. That, that it's a lot to, to deal with
Meryl Comer (18:48):
Catherine. You can map the brain health journey, but it struck me that when people try to connect with the provider and the payer system, the experience is often still frustrating, prolonged disheartening. Is that why strategically you built in a mirror initiative with an expert advisory group of doctors and providers, so you could have the conversation with them because the goal is to get people to the right care at the right time.
Catherine Patterson (19:20):
That's right. We had an incredible group of healthcare professionals work with us on the provider side of this framework. And the whole idea was if we're going to build demand on the patient's side having people be more comfort, comfortable talking about brain health, having people be more comfortable even expressing concerns around their cognition, there needed to be healthcare providers ready and willing and able to meet that demand. And so we have crafted a framework predominantly for primary care providers to help with the early detection and diagnosis, potential diagnosis of Alzheimer's disease. There. The frontline of healthcare providers is predominantly PCPs. So how are we preparing and equipping primary care providers with the tools they need to identify and then diagnose individuals? We also understand that there needs to be a partnership with specialists. There is always going to be that connection between primary care and neurologists. And so we are also building into this framework for that handoff. How are we helping elevate or escalate or flag individual patients who need to be seen more quickly with the hope that that will reduce those long wait times. I mean, sometimes individuals wait between nine and 12 months to get seen by a neurologist. And our goal here is to really, again, help triage patients and get them into the specialist office earlier so that they can be diagnosed more quickly.
Meryl Comer (20:55):
Well, you've designed it with such thoughtfulness. It's also a, a, in my mind, a sort of living, breathing document. Do you anticipate a aversion to two for the set of resources as you learn new things?
Catherine Patterson (21:11):
Absolutely. We are committed to staying abreast of the science. The science is moving so quickly. There are innovations almost every week. So us against Alzheimer's has committed to regularly updating the brain health journey, but also making sure that we are adding whether it's new resources, whether it is tweaks to the framework, particularly for healthcare providers as the scientific landscape changes and advances. I mean, my hope is that we are working towards a day where none of us have to even mention the word Alzheimer's. That we have either developed ways of slowing it so much, or we have developed a potential vaccine that my children, my grandchildren, don't have to face this disease. But until then, we will continue to update these tools and try to make this journey even a little bit easier for individuals who are facing cognitive impairment.
Meryl Comer (22:09):
I think we would all agree that we want to make it better for the next family and for the next generation. Our guest, Catherine Patterson, our COO at us against Alzheimer's, who is driving the brain health journey in all its dimensions. And Nancy, er, who serves as a lived experience advisor for the Brain Health journey. And Nancy, I hope many of us follow your example along with trials in the future. BrainStorm, we'll hear from us against Alzheimer's Brain Health Journey's Expert Advisory Group on their goal to help move the patients from personal memory concerns to accurate diagnosis. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
Close (22:59):
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