BrainStorm
When Memory Fades: Living Well After an Alzheimer's Diagnosis with Dr. Nathaniel Chin
When Memory Fades: Living Well After an Alzheimer's Diagnosis with Dr. Nathaniel Chin
In part two of Meryl Comer’s conversation with Dr. Nathaniel Chin — geriatrician, researcher, and author of When Memory Fades — they explore the practical and emotional realities of life after an Alzheimer's diagnosis. Drawing on both his clinical expertise and personal experience of caring for his father, Dr. Chin addresses the often-overlooked needs of care partners, the importance of acting quickly on legal and financial planning after diagnosis, and why lifestyle interventions matter even before seeing a specialist. The conversation also touches on the complexity of mixed dementia diagnoses, the stigma patients face, behavioral symptoms that families should anticipate, and how pre-existing relationship dynamics don't disappear; they intensify. Dr. Chin closes with an overview of the Clarity study, a national research initiative seeking participants to better understand multiple brain disease processes simultaneously. You won’t want to miss this informative and personal interview!
Dr. Nathanel Chin (00:00):
This is where I think brain health and lifestyle interventions are so critical. You don't need a doctor to tell you, you know what? I do need to move more. I do need to address my sleep, my mental stimulation, my diet, my social engagement. These are things where most people know what's valuable, but they need, they need a sort of structure.
Speaker 2 (00:22):
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl 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 (00:41):
This is BrainStorm and I’m Meryl Comer. In part one of our conversation with Dr. Nathaniel Chin, Director of Medical Services at The Wisconsin Alzheimer's Disease Research Center and The Wisconsin Registry for Alzheimer's Prevention. He shared a very personal family story from his new book When Memory Fades. It also shaped his personal mission. That early diagnosis isn't a verdict of doom, but a tool for action. In part two, I asked him about the book's, emphasis on practical steps to live well after a diagnosis.
Dr. Nathanel Chin (01:22):
So I thought it was really important to recognize that in the complexity of this disease, in the emotional turbulence that a person experiences, there's also the complexity of everyone else's feelings and their dynamics. And we have to be able to navigate those in order to provide the best care and support for the person with the disease.
Meryl Comer (01:43):
Dear father was a doctor as well. As a doctor's wife, I type up my observations. I hand them to the doctor and respectfully to my husband who is in denial that there's something wrong. The doctor examines him, comes back out, says to me, no gross abnormalities. Perhaps you should get off his back. Now, what's wrong with that scenario?
Dr. Nathanel Chin (02:11):
Well, there's a lot wrong with that scenario, Meryl, and I apologize if that was your experience. Putting aside the misogyny and sexism of that experience. There is a disregard for the care partner, you know, family members observations, and so does the complete opposite of what we know is important, and that is to empower families and, and care partners to be observant and supportive. I do hear more and more in the trainees, and I have a lot of trainees come through my clinic. You know, there are, there are two patients in the room. There's the one that you talk to and you look at, but then there's the patient next to that person who tends to be the spouse or the child. And the more we recognize that, I think the more value we can put into that. I think it, it makes for a better holistic evaluation, but we, we have a ways to go
Meryl Comer (03:02):
Too often. You can't get a loved one to an expert like yourself for about a year. So a lot transpires during that time. What recommendations do you give to loved ones? Because I carefully tracked my observations to see if there was some consistency, but what advice do you give on that?
Dr. Nathanel Chin (03:26):
Well, it's, it's unfortunate that there's such a long wait, but you're absolutely right. Depending on where you live, it can be over a year sometime, at least it's months. And so what I usually will say to people in the community is that's still like, get your, get your scheduled visit. So the first thing is you do need to go in and talk to your primary care provider to, to, so that there's documentation that there's a concern, there is a thinking change that's been observed either by the family or perhaps the patient if they're willing to say it. But it's trying to get a sense of what you just described documenting. Is there truly a consistent pattern? Is there a decline? Are there other things like mood or stress or unhealthy diet that that could be factors here. And so you can do that as a family member and as a patient.
Dr. Nathanel Chin (04:12):
And then there's interventions, and this is where I think brain health and lifestyle interventions are so critical. You don't need a doctor to tell you, you know what, I do need to move more. I do need to address my sleep, my mental stimulation, my diet, my social engagement. These are things where most people know what's valuable. I mean, they've heard it in the news often enough, but they need, they need a sort of structure to start developing those habits. And that can happen during the six months or 12 months. You have to wait. And frankly, it's a good thing because you don't, you wanna be in your best shape when you see the specialist, because if it's truly Alzheimer's or brain disease, you wanna have already ruled out those other low hanging fruit reversible classes.
Meryl Comer (04:56):
What is your view because there are not enough geriatricians that the, the movement is to really move it to primary care practice? Well, the primary care doctor has classically been very paternalistic, not wanted to concern the patient, depress them. So they don't tell them what's going on, even if they suspect it.
Dr. Nathanel Chin (05:23):
Yeah, that's a tough question. Meryl. I, I will say that I recognize there is this movement to push more of a memory assessment to primary care. And I'm not fully in favor of that out of recognition that primary care is also responsible for a hundred other diseases and other things that they have to do, and they only have 15 minutes, whereas I might have an hour. So I don't think it's feasible in the current system to ask primary care to do everything that I do in a specialty clinic. I think that's unfair. I do think we can get to earlier diagnosis led by primary care, meaning getting, getting that history, looking at those reversible factors, doing some cognitive screening tests. We can do those things in primary care if we change some of the structure and give them more time or availability. Most of the providers that I talk to agree that even if they didn't think there was meaning in the new therapies or in certain treatments, they would still share what they've collected. If you get a test, if you respond to a concern, you, you have to own that and, and talk to your patient about it now, how much they talk about it. Merrill is probably going to be a great variety, but I do think that that's getting better. I could be idealistic there, but I do think more providers are, feel that ethical obligation to talk more about what they're seeing.
Meryl Comer (06:49):
There is a moment in time, a window where you really have to get certain things in order to be able to support and care for a loved one with this disease medical, legal, financial, all of the above. Why was it important for you as the doctor to create that flag for us?
Dr. Nathanel Chin (07:12):
After my dad got diagnosed, all of the non-medical things that we had to do and, and frankly felt more important than starting a medication that maybe helped with symptoms. Who's your power of attorney? What are you going to do financially? Is this the right living environment? Who's your support system? Have we talked about what this disease will look like five years from now? But I don't think all the physicians and the advanced practice providers recognized that really needs to happen in a short window to really set people up for success. And so I felt the need to say, okay, even from a medical provider perspective, this has to happen right away. Because I think when patients and families heard me say it somehow, it impacted them more than when the social worker said it and said it better than I did. It still meant more as the, the physician that I did it. And so I felt like it was an obligation then to really take ownership and support the social workers and case managers in what they were already doing well, but in really highlighting it and prioritizing it.
Meryl Comer (08:17):
Thank you. Because I think that too often goes unsaid and there is a window, and when that closes, it complicates everything. Today you're getting multiple diagnosis. It's not just one thing. So you can have Alzheimer's or you can have vascular dementia. How does that complicate your conversation?
Dr. Nathanel Chin (08:39):
It's true. It's so true that the more we've learned, the more complicated it's gotten, the longer it takes for us to explain it. And, you know, I do this on a regular basis in research and in clinic, and it still takes me a really long time to get through the whole thing because of how complicated it is. And, and more often than not, a person has multiple disease processes. We've learned this through the donation of brains that only about a third of Alzheimer's cases are, are pure Alzheimer's. And more often than not, it's going to be that mixture like you described. And I can't, I can't give a person a, a number. We all want numbers. I can't give them a number. If this Alzheimer's part is contributing 60% to the symptoms you're experiencing and the vascular disease is 30% and your sleep apnea is 10%, I can't do that.
Dr. Nathanel Chin (09:32):
But I do try to tell them what I, what I think is the primary driver of what's happening. And, and I can do that based on their history. And again, it's just my clinical judgment, you know, what was your earliest symptom? What has the course been like? What has the rest of your health look like? And if I have cognitive testing and you'd think I was a neuropsychologist based on how much I love cognitive testing, but if I had that testing early on, I can see the earliest changes and that can, the pattern can truly be reflective of what could be happening in the brain. I can't tell you with co a hundred percent confidence, and this is what I think is happening. I think people respond better to that truthfulness than someone who presents themself as the definitive. Well, this, of course is the answer.
Meryl Comer (10:18):
Dr. Chi, do you ever lose sleep over the notion that when someone is handed a diagnosis, there is such stigma attached to the disease and we've not been able to override it, that it really it impacts their lives in dramatic ways? Both professionally, personally,
Dr. Nathanel Chin (10:39):
I, yes, I've had personal distress over the distress that I believe my truth telling has caused. And I think that happens as you go earlier and earlier in the disease process. So in particular, you know, for those with mild cognitive impairment who have mild thinking changes, you know, mild changes on their, their thinking test, but are functionally independent, that's a lot of information to say, you have this MCI, you have Alzheimer's disease causing it, and you're going to progress and you're going to have more symptoms and you're going to lose some of your day-to-day functions and, and that, but that's not going to happen tomorrow. That could happen in the next few years. Many people can take that information and when it's presented in the right way and, and use it to, to make certain lifestyle changes, to plan, to get involved in research. And they find it empowering.
Dr. Nathanel Chin (11:32):
But some people will be very anxious and they worry about it, and it causes a lot of distress. And I will see them repeatedly after my visit and with each time I see them, I recognize, you know, inform, I, I'm a believer that information is power and, and when, when a person wants it, they should have it. But I also see the, the other side of that and how it can be destructive. It doesn't necessarily change. I mean, in a clinic, it's my obligation to share a diagnosis. I don't feel like I, I've somehow crossed the ethical line, but I, I do see the, that it's not as clear and clean as I would like it to be. And it, it is bothersome. And, and so really, it, it really behooves us to then provide the right counseling and resources and support afterwards, which aren't always there, depending on your healthcare system.
Meryl Comer (12:23):
So chapter four, my world's fallen apart, have faith you will build a new life after diagnosis. Cheers. Chapter five, yes, you can live the Good life. Your personal acronym is the Chin Up Method.
Dr. Nathanel Chin (12:41):
I use that, that silly acronym as a way of, of sort of collecting the behaviors and lifestyle strategies that most of my patients already know but to, to, to organize it so that they recognize or they see there is still value in, in making these small improvements every day. And I tend to focus, you know, there's gr there's great evidence now. So US Pointer study really shows that there's value in doing this. But I, I try to take the lead from my patient and the family. What is the most realistic, you know, what are you willing to do to, and, and I'm, and I start there and I recognize that because I'm constantly trying to change my habits and I have not succeeded in all of them. So I try to bring that, that real world perspective to it.
Meryl Comer (13:27):
Dr. Chin I may have missed it, so excuse me. When I was reviewing the book about 85% of people experience some kind of psychosis, which is really a driver that ends up forcing families who've tried to take care of a loved one at home to look at other considerations. Was it included? Did I miss it? Why are doctors hesitant about bringing to, to light something that may in fact happen more frequently than not?
Dr. Nathanel Chin (14:05):
We call that BPSD, behavioral and psychological symptoms. It was not addressed in the book. And so that's a good observation. I did not cover it. One of my, I wanted to, but the book, as you know, it already has a lot of information. And so I, it, the decision was made that was, it would be too much. But it's also, those symptoms tend to occur slightly later in the course of a person's disease. Now, that doesn't mean you don't experience them in MCI or mild stage, but the frequency is notably higher in moderate stage. But it is hard, and you just described it right, that doctors, we, we haven't always given the, the best of advice. We've been very fearful of using medications that are antipsychotics because of prior misuse of them leading to over sedation and falls and potentially increased mortality. But there is a place for those medications as a family member, not as the, the physician, but as the family member, I was very much in support of a medication that might calm my dad. Even if it meant slight increased risk of mortality, mortality was not at that point the thing we were trying to stave off. So as a geriatrician, we talk about you know, behavioral changes, a lot of education of how to approach people addressing things before they feel like they're spiraling. But even then, you know, it's, it's imperfect. But we do feel like we can get to things earlier and, and ideally reduce the severity or prevent sort of that more extreme symptom of agitation or aggression that, that you described. Yeah,
Meryl Comer (15:44):
It struck me that with earlier diagnosis, you're going to see the psychosis coming up earlier because of other factors surrounding it. But I'm not a doctor, right? <Laugh>, I'm, I was just a doctor's wife <laugh>, so
Dr. Nathanel Chin (16:00):
No, you're, it's a different type of psychological response. Meryl, you're absolutely right. You know, we see apathy and depression and worry and anxiety in earlier cases. We need to be prepared to address that. If there's mixed disease, there could be hallucinations and paranoia. So I, you're absolutely right. It's not something we can just say, oh, that's for later. So I agree with you. We, and I do think there's more active research in the area, but we're not, we're not where we want to be in that area the way we are with just identifying the disease itself.
Meryl Comer (16:31):
So let's move on. We're going to see a brighter future ahead, chapter six, chapter seven. You're not meant to do this alone, and I really need to quote you. You say, dementia does not erase the relationship that existed before the condition. It tends to magnify what's already there. Now, my mother did not like my husband. Well, so can you imagine her in dementia, right? <Laugh>, tell me what, what's going on and why? This chapter, to me was really very important.
Dr. Nathanel Chin (17:11):
Well, your example was driven by the fact that I see this in clinic a lot. So the running joke in my clinic is that I'm also a marriage counselor. And so and again, because of the personal experience, I totally get it, and I can understand the dynamics that happen. But when people come to a, a memory clinic and they already have marital distress or discord, it does not get better with the diagnosis of dementia. There could be more understanding of maybe this is why they're behaving this way, but the, the issues they were facing before do not somehow go away. In fact, they just get accentuated. And so I spend a lot of my visit, not the diagnostic visit, but the visits that happen afterwards, counseling on how to approach your loved one, how to handle the stress and the coping as the care partner, because again, I do view them as my patient as well.
Dr. Nathanel Chin (18:05):
And then I do believe the health of the care partner and the approach of the care partner greatly influences the overall care of the patient that I'm actually supposed to see. You know, if you were having challenges with your sibling before this diagnosis, well, that's not going to go away. You're not, you can unify with your siblings, but how you approach the care of your parent could still be <laugh>, could still be another battle that you experience. And so just to be prepared for that, because that's okay. And I think that that's the other thing is we need to have co compassion and grace for ourselves. And so, recognizing you're not alone. These relationships are challenging. They're going to continue to be challenging and, and just how do you make the best of the situation? It's a really hard thing for family members and friends to, to experience.
Dr. Nathanel Chin (18:52):
And yet most of us will experience it at, at least at, at some level. And so I wanted people to see the commonality in that, that they're not alone in experiencing this really horrible yet universal experience in someone with, with dementia. And I, I usually will counsel people as I, as I mentioned in the book, to try to live in, in your loved one's world, and to try to, to appreciate the time you have, regardless if they don't know your name or they mistake you for a different family member but that they still know your family, they still love you, and they still care for you. And I didn't tell the story in the book but my father stopped, you know, knowing my name and, and, and he would look at me very inquisitively when I would show up. And I don't know if he thought I was a d like a brother from a long time ago or not. And I remember you're so lost in everything else. And real, you know, this too. You're so lost in everything else. You don't have that much time to think about it in the moment afterwards, after he died. I, I thought about it, and I actually wasn't upset because he, I knew he still loved me, and I kind of just accepted it as that
Meryl Comer (20:03):
Excite us about the goals of the major initiative underway called Clarity, the, around the biomarkers, and do you need people? How, how might someone engage?
Dr. Nathanel Chin (20:18):
Yeah. So Clarity is this wonderful national study that's built on top of our already existing A DRC network, so Alzheimer's Disease Research Center Network. And they're anywhere in the mid thirties of these centers, kind of centers of excellence when it co when it comes to Alzheimer's and related dementia research. And so they're already conducting these great trials where they're really observing how people are experiencing thinking change. They're looking at lifestyle, social determinants of health. And then of course, they're testing them to see about their, their brain function. And then clarity is a study on top of that that's now allowing for more imaging of the brain. So it's looking at amyloid, it's looking at tau, it's looking at how the brain uses glucose. They'll called an FDG PET scan. It's also looking at vascular disease, and then it collects blood so that we can look at other potential protein diseases like TDP 43 and Lewy body. And so it's this idea that we recognize it's not just Alzheimer's or it's not just vascular, that we have to look for multiple different processes happening at the same time.
Meryl Comer (21:25):
What I appreciated was your inclusion about questions we should ask before volunteering
Dr. Nathanel Chin (21:32):
The clinician family member in me that, you know, as much as I love research, it is voluntary, right? And so you want people who are truly ready and invested. And I do believe that res it should be bi-directional, the idea of the, the perfect altruistic participant. I think we need to put that stereotype and myth away. People want information that's going to be helpful to them, and they should get that information. And so I try to empower my patients and community members to ask, get all of your questions answered. Make sure you feel comfortable before you sign the, the conformed consent and ask what you're going to get out of it. And, and it could just be information, it could just be support. Oh, you're going to get to meet with our coordinators and our clinicians. That's fine. But this idea that participants just give and nothing comes back to them, I think we need to get rid of that image. And, and so I think, and I'm trying to get patients and, and participants to, to demand that if we trust the information we're gathering and it could be useful, I, I think we should be sharing that back to them.
Meryl Comer (22:34):
Well, thank you for taking the time to write this book. I really think it's seminal for families and very heartfelt. I also want to thank you for being part of our expert advisory committee on UsAgainstAlzheimer's Brain Health Journey. Because I think the conversation has to work both ways, not just with patients and caregivers, but also with professionals like yourself. So thank you again. Our guest has been Dr. Nathaniel Chin, his book, when Memory Fades, what to Expect at every stage, from Early Signs to Full Support for Alzheimer's and Dementia. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
Speaker 2 (23:28):
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About This Episode
In part two of Meryl Comer’s conversation with Dr. Nathaniel Chin — geriatrician, researcher, and author of When Memory Fades — they explore the practical and emotional realities of life after an Alzheimer's diagnosis. Drawing on both his clinical expertise and personal experience of caring for his father, Dr. Chin addresses the often-overlooked needs of care partners, the importance of acting quickly on legal and financial planning after diagnosis, and why lifestyle interventions matter even before seeing a specialist. The conversation also touches on the complexity of mixed dementia diagnoses, the stigma patients face, behavioral symptoms that families should anticipate, and how pre-existing relationship dynamics don't disappear; they intensify. Dr. Chin closes with an overview of the Clarity study, a national research initiative seeking participants to better understand multiple brain disease processes simultaneously. You won’t want to miss this informative and personal interview!
Transcript
Dr. Nathanel Chin (00:00):
This is where I think brain health and lifestyle interventions are so critical. You don't need a doctor to tell you, you know what? I do need to move more. I do need to address my sleep, my mental stimulation, my diet, my social engagement. These are things where most people know what's valuable, but they need, they need a sort of structure.
Speaker 2 (00:22):
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl 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 (00:41):
This is BrainStorm and I’m Meryl Comer. In part one of our conversation with Dr. Nathaniel Chin, Director of Medical Services at The Wisconsin Alzheimer's Disease Research Center and The Wisconsin Registry for Alzheimer's Prevention. He shared a very personal family story from his new book When Memory Fades. It also shaped his personal mission. That early diagnosis isn't a verdict of doom, but a tool for action. In part two, I asked him about the book's, emphasis on practical steps to live well after a diagnosis.
Dr. Nathanel Chin (01:22):
So I thought it was really important to recognize that in the complexity of this disease, in the emotional turbulence that a person experiences, there's also the complexity of everyone else's feelings and their dynamics. And we have to be able to navigate those in order to provide the best care and support for the person with the disease.
Meryl Comer (01:43):
Dear father was a doctor as well. As a doctor's wife, I type up my observations. I hand them to the doctor and respectfully to my husband who is in denial that there's something wrong. The doctor examines him, comes back out, says to me, no gross abnormalities. Perhaps you should get off his back. Now, what's wrong with that scenario?
Dr. Nathanel Chin (02:11):
Well, there's a lot wrong with that scenario, Meryl, and I apologize if that was your experience. Putting aside the misogyny and sexism of that experience. There is a disregard for the care partner, you know, family members observations, and so does the complete opposite of what we know is important, and that is to empower families and, and care partners to be observant and supportive. I do hear more and more in the trainees, and I have a lot of trainees come through my clinic. You know, there are, there are two patients in the room. There's the one that you talk to and you look at, but then there's the patient next to that person who tends to be the spouse or the child. And the more we recognize that, I think the more value we can put into that. I think it, it makes for a better holistic evaluation, but we, we have a ways to go
Meryl Comer (03:02):
Too often. You can't get a loved one to an expert like yourself for about a year. So a lot transpires during that time. What recommendations do you give to loved ones? Because I carefully tracked my observations to see if there was some consistency, but what advice do you give on that?
Dr. Nathanel Chin (03:26):
Well, it's, it's unfortunate that there's such a long wait, but you're absolutely right. Depending on where you live, it can be over a year sometime, at least it's months. And so what I usually will say to people in the community is that's still like, get your, get your scheduled visit. So the first thing is you do need to go in and talk to your primary care provider to, to, so that there's documentation that there's a concern, there is a thinking change that's been observed either by the family or perhaps the patient if they're willing to say it. But it's trying to get a sense of what you just described documenting. Is there truly a consistent pattern? Is there a decline? Are there other things like mood or stress or unhealthy diet that that could be factors here. And so you can do that as a family member and as a patient.
Dr. Nathanel Chin (04:12):
And then there's interventions, and this is where I think brain health and lifestyle interventions are so critical. You don't need a doctor to tell you, you know what, I do need to move more. I do need to address my sleep, my mental stimulation, my diet, my social engagement. These are things where most people know what's valuable. I mean, they've heard it in the news often enough, but they need, they need a sort of structure to start developing those habits. And that can happen during the six months or 12 months. You have to wait. And frankly, it's a good thing because you don't, you wanna be in your best shape when you see the specialist, because if it's truly Alzheimer's or brain disease, you wanna have already ruled out those other low hanging fruit reversible classes.
Meryl Comer (04:56):
What is your view because there are not enough geriatricians that the, the movement is to really move it to primary care practice? Well, the primary care doctor has classically been very paternalistic, not wanted to concern the patient, depress them. So they don't tell them what's going on, even if they suspect it.
Dr. Nathanel Chin (05:23):
Yeah, that's a tough question. Meryl. I, I will say that I recognize there is this movement to push more of a memory assessment to primary care. And I'm not fully in favor of that out of recognition that primary care is also responsible for a hundred other diseases and other things that they have to do, and they only have 15 minutes, whereas I might have an hour. So I don't think it's feasible in the current system to ask primary care to do everything that I do in a specialty clinic. I think that's unfair. I do think we can get to earlier diagnosis led by primary care, meaning getting, getting that history, looking at those reversible factors, doing some cognitive screening tests. We can do those things in primary care if we change some of the structure and give them more time or availability. Most of the providers that I talk to agree that even if they didn't think there was meaning in the new therapies or in certain treatments, they would still share what they've collected. If you get a test, if you respond to a concern, you, you have to own that and, and talk to your patient about it now, how much they talk about it. Merrill is probably going to be a great variety, but I do think that that's getting better. I could be idealistic there, but I do think more providers are, feel that ethical obligation to talk more about what they're seeing.
Meryl Comer (06:49):
There is a moment in time, a window where you really have to get certain things in order to be able to support and care for a loved one with this disease medical, legal, financial, all of the above. Why was it important for you as the doctor to create that flag for us?
Dr. Nathanel Chin (07:12):
After my dad got diagnosed, all of the non-medical things that we had to do and, and frankly felt more important than starting a medication that maybe helped with symptoms. Who's your power of attorney? What are you going to do financially? Is this the right living environment? Who's your support system? Have we talked about what this disease will look like five years from now? But I don't think all the physicians and the advanced practice providers recognized that really needs to happen in a short window to really set people up for success. And so I felt the need to say, okay, even from a medical provider perspective, this has to happen right away. Because I think when patients and families heard me say it somehow, it impacted them more than when the social worker said it and said it better than I did. It still meant more as the, the physician that I did it. And so I felt like it was an obligation then to really take ownership and support the social workers and case managers in what they were already doing well, but in really highlighting it and prioritizing it.
Meryl Comer (08:17):
Thank you. Because I think that too often goes unsaid and there is a window, and when that closes, it complicates everything. Today you're getting multiple diagnosis. It's not just one thing. So you can have Alzheimer's or you can have vascular dementia. How does that complicate your conversation?
Dr. Nathanel Chin (08:39):
It's true. It's so true that the more we've learned, the more complicated it's gotten, the longer it takes for us to explain it. And, you know, I do this on a regular basis in research and in clinic, and it still takes me a really long time to get through the whole thing because of how complicated it is. And, and more often than not, a person has multiple disease processes. We've learned this through the donation of brains that only about a third of Alzheimer's cases are, are pure Alzheimer's. And more often than not, it's going to be that mixture like you described. And I can't, I can't give a person a, a number. We all want numbers. I can't give them a number. If this Alzheimer's part is contributing 60% to the symptoms you're experiencing and the vascular disease is 30% and your sleep apnea is 10%, I can't do that.
Dr. Nathanel Chin (09:32):
But I do try to tell them what I, what I think is the primary driver of what's happening. And, and I can do that based on their history. And again, it's just my clinical judgment, you know, what was your earliest symptom? What has the course been like? What has the rest of your health look like? And if I have cognitive testing and you'd think I was a neuropsychologist based on how much I love cognitive testing, but if I had that testing early on, I can see the earliest changes and that can, the pattern can truly be reflective of what could be happening in the brain. I can't tell you with co a hundred percent confidence, and this is what I think is happening. I think people respond better to that truthfulness than someone who presents themself as the definitive. Well, this, of course is the answer.
Meryl Comer (10:18):
Dr. Chi, do you ever lose sleep over the notion that when someone is handed a diagnosis, there is such stigma attached to the disease and we've not been able to override it, that it really it impacts their lives in dramatic ways? Both professionally, personally,
Dr. Nathanel Chin (10:39):
I, yes, I've had personal distress over the distress that I believe my truth telling has caused. And I think that happens as you go earlier and earlier in the disease process. So in particular, you know, for those with mild cognitive impairment who have mild thinking changes, you know, mild changes on their, their thinking test, but are functionally independent, that's a lot of information to say, you have this MCI, you have Alzheimer's disease causing it, and you're going to progress and you're going to have more symptoms and you're going to lose some of your day-to-day functions and, and that, but that's not going to happen tomorrow. That could happen in the next few years. Many people can take that information and when it's presented in the right way and, and use it to, to make certain lifestyle changes, to plan, to get involved in research. And they find it empowering.
Dr. Nathanel Chin (11:32):
But some people will be very anxious and they worry about it, and it causes a lot of distress. And I will see them repeatedly after my visit and with each time I see them, I recognize, you know, inform, I, I'm a believer that information is power and, and when, when a person wants it, they should have it. But I also see the, the other side of that and how it can be destructive. It doesn't necessarily change. I mean, in a clinic, it's my obligation to share a diagnosis. I don't feel like I, I've somehow crossed the ethical line, but I, I do see the, that it's not as clear and clean as I would like it to be. And it, it is bothersome. And, and so really, it, it really behooves us to then provide the right counseling and resources and support afterwards, which aren't always there, depending on your healthcare system.
Meryl Comer (12:23):
So chapter four, my world's fallen apart, have faith you will build a new life after diagnosis. Cheers. Chapter five, yes, you can live the Good life. Your personal acronym is the Chin Up Method.
Dr. Nathanel Chin (12:41):
I use that, that silly acronym as a way of, of sort of collecting the behaviors and lifestyle strategies that most of my patients already know but to, to, to organize it so that they recognize or they see there is still value in, in making these small improvements every day. And I tend to focus, you know, there's gr there's great evidence now. So US Pointer study really shows that there's value in doing this. But I, I try to take the lead from my patient and the family. What is the most realistic, you know, what are you willing to do to, and, and I'm, and I start there and I recognize that because I'm constantly trying to change my habits and I have not succeeded in all of them. So I try to bring that, that real world perspective to it.
Meryl Comer (13:27):
Dr. Chin I may have missed it, so excuse me. When I was reviewing the book about 85% of people experience some kind of psychosis, which is really a driver that ends up forcing families who've tried to take care of a loved one at home to look at other considerations. Was it included? Did I miss it? Why are doctors hesitant about bringing to, to light something that may in fact happen more frequently than not?
Dr. Nathanel Chin (14:05):
We call that BPSD, behavioral and psychological symptoms. It was not addressed in the book. And so that's a good observation. I did not cover it. One of my, I wanted to, but the book, as you know, it already has a lot of information. And so I, it, the decision was made that was, it would be too much. But it's also, those symptoms tend to occur slightly later in the course of a person's disease. Now, that doesn't mean you don't experience them in MCI or mild stage, but the frequency is notably higher in moderate stage. But it is hard, and you just described it right, that doctors, we, we haven't always given the, the best of advice. We've been very fearful of using medications that are antipsychotics because of prior misuse of them leading to over sedation and falls and potentially increased mortality. But there is a place for those medications as a family member, not as the, the physician, but as the family member, I was very much in support of a medication that might calm my dad. Even if it meant slight increased risk of mortality, mortality was not at that point the thing we were trying to stave off. So as a geriatrician, we talk about you know, behavioral changes, a lot of education of how to approach people addressing things before they feel like they're spiraling. But even then, you know, it's, it's imperfect. But we do feel like we can get to things earlier and, and ideally reduce the severity or prevent sort of that more extreme symptom of agitation or aggression that, that you described. Yeah,
Meryl Comer (15:44):
It struck me that with earlier diagnosis, you're going to see the psychosis coming up earlier because of other factors surrounding it. But I'm not a doctor, right? <Laugh>, I'm, I was just a doctor's wife <laugh>, so
Dr. Nathanel Chin (16:00):
No, you're, it's a different type of psychological response. Meryl, you're absolutely right. You know, we see apathy and depression and worry and anxiety in earlier cases. We need to be prepared to address that. If there's mixed disease, there could be hallucinations and paranoia. So I, you're absolutely right. It's not something we can just say, oh, that's for later. So I agree with you. We, and I do think there's more active research in the area, but we're not, we're not where we want to be in that area the way we are with just identifying the disease itself.
Meryl Comer (16:31):
So let's move on. We're going to see a brighter future ahead, chapter six, chapter seven. You're not meant to do this alone, and I really need to quote you. You say, dementia does not erase the relationship that existed before the condition. It tends to magnify what's already there. Now, my mother did not like my husband. Well, so can you imagine her in dementia, right? <Laugh>, tell me what, what's going on and why? This chapter, to me was really very important.
Dr. Nathanel Chin (17:11):
Well, your example was driven by the fact that I see this in clinic a lot. So the running joke in my clinic is that I'm also a marriage counselor. And so and again, because of the personal experience, I totally get it, and I can understand the dynamics that happen. But when people come to a, a memory clinic and they already have marital distress or discord, it does not get better with the diagnosis of dementia. There could be more understanding of maybe this is why they're behaving this way, but the, the issues they were facing before do not somehow go away. In fact, they just get accentuated. And so I spend a lot of my visit, not the diagnostic visit, but the visits that happen afterwards, counseling on how to approach your loved one, how to handle the stress and the coping as the care partner, because again, I do view them as my patient as well.
Dr. Nathanel Chin (18:05):
And then I do believe the health of the care partner and the approach of the care partner greatly influences the overall care of the patient that I'm actually supposed to see. You know, if you were having challenges with your sibling before this diagnosis, well, that's not going to go away. You're not, you can unify with your siblings, but how you approach the care of your parent could still be <laugh>, could still be another battle that you experience. And so just to be prepared for that, because that's okay. And I think that that's the other thing is we need to have co compassion and grace for ourselves. And so, recognizing you're not alone. These relationships are challenging. They're going to continue to be challenging and, and just how do you make the best of the situation? It's a really hard thing for family members and friends to, to experience.
Dr. Nathanel Chin (18:52):
And yet most of us will experience it at, at least at, at some level. And so I wanted people to see the commonality in that, that they're not alone in experiencing this really horrible yet universal experience in someone with, with dementia. And I, I usually will counsel people as I, as I mentioned in the book, to try to live in, in your loved one's world, and to try to, to appreciate the time you have, regardless if they don't know your name or they mistake you for a different family member but that they still know your family, they still love you, and they still care for you. And I didn't tell the story in the book but my father stopped, you know, knowing my name and, and, and he would look at me very inquisitively when I would show up. And I don't know if he thought I was a d like a brother from a long time ago or not. And I remember you're so lost in everything else. And real, you know, this too. You're so lost in everything else. You don't have that much time to think about it in the moment afterwards, after he died. I, I thought about it, and I actually wasn't upset because he, I knew he still loved me, and I kind of just accepted it as that
Meryl Comer (20:03):
Excite us about the goals of the major initiative underway called Clarity, the, around the biomarkers, and do you need people? How, how might someone engage?
Dr. Nathanel Chin (20:18):
Yeah. So Clarity is this wonderful national study that's built on top of our already existing A DRC network, so Alzheimer's Disease Research Center Network. And they're anywhere in the mid thirties of these centers, kind of centers of excellence when it co when it comes to Alzheimer's and related dementia research. And so they're already conducting these great trials where they're really observing how people are experiencing thinking change. They're looking at lifestyle, social determinants of health. And then of course, they're testing them to see about their, their brain function. And then clarity is a study on top of that that's now allowing for more imaging of the brain. So it's looking at amyloid, it's looking at tau, it's looking at how the brain uses glucose. They'll called an FDG PET scan. It's also looking at vascular disease, and then it collects blood so that we can look at other potential protein diseases like TDP 43 and Lewy body. And so it's this idea that we recognize it's not just Alzheimer's or it's not just vascular, that we have to look for multiple different processes happening at the same time.
Meryl Comer (21:25):
What I appreciated was your inclusion about questions we should ask before volunteering
Dr. Nathanel Chin (21:32):
The clinician family member in me that, you know, as much as I love research, it is voluntary, right? And so you want people who are truly ready and invested. And I do believe that res it should be bi-directional, the idea of the, the perfect altruistic participant. I think we need to put that stereotype and myth away. People want information that's going to be helpful to them, and they should get that information. And so I try to empower my patients and community members to ask, get all of your questions answered. Make sure you feel comfortable before you sign the, the conformed consent and ask what you're going to get out of it. And, and it could just be information, it could just be support. Oh, you're going to get to meet with our coordinators and our clinicians. That's fine. But this idea that participants just give and nothing comes back to them, I think we need to get rid of that image. And, and so I think, and I'm trying to get patients and, and participants to, to demand that if we trust the information we're gathering and it could be useful, I, I think we should be sharing that back to them.
Meryl Comer (22:34):
Well, thank you for taking the time to write this book. I really think it's seminal for families and very heartfelt. I also want to thank you for being part of our expert advisory committee on UsAgainstAlzheimer's Brain Health Journey. Because I think the conversation has to work both ways, not just with patients and caregivers, but also with professionals like yourself. So thank you again. Our guest has been Dr. Nathaniel Chin, his book, when Memory Fades, what to Expect at every stage, from Early Signs to Full Support for Alzheimer's and Dementia. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.
Speaker 2 (23:28):
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