Supporting patients and families; a geriatrician’s perspective with Dr. Nathaniel Chin

Virginia and Steve are joined by Nathaniel Chin, MD, a geriatrician, associate professor at the University of Wisconsin Department of Medicine, Medical Director of the Wisconsin Alzheimer's Disease Research Center, and host and creator of the popular Dementia Matters podcast.  Dr. Chin recounts how his father's Alzheimer's diagnosis and dementia journey inspired his career choice.  He discusses the importance of getting an early diagnosis, keeping records, and the critical role that caregivers play in the diagnosis and treatment of people with cognitive impairments.  Dr. Chin also describes his involvement in dementia research at the Wisconsin Alzheimer’s Disease Research Center and the Wisconsin Registry for Alzheimer's Prevention.  To learn more about the Wisconsin Alzheimer’s Disease Research Center and Dr. Chin’s podcast visit: https://www.adrc.wisc.edu/dementia-matters

Transcript

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Supporting patients and families; a geriatrician’s perspective with Dr. Nathaniel Chin

Steve  00:06

From the University of California, Irvine, this is UCI minds, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.

Virginia  00:22

Welcome to spotlight on care. I'm Virginia Naeve and I'm here with my co host, Mr. Steve O'Leary. Today we have a very special show. As we are welcoming Dr. Nathaniel Chin from the University of Wisconsin. Dr. Chin is an esteemed geriatrician and wears many hats at that university. He is quite busy as an associate director of the geriatric Memory program, Medical Director of the Wisconsin registry for Alzheimer's prevention, or the WRAP study, the director and clinical core co leader of their ADRC and is an associate professor of the Department of Medicine, geriatric division. If that weren't enough, he is the host of a very popular podcast called Dementia matters. Welcome, Dr. Chin. We're glad you're here.

Dr. Chin  01:17

Thank you for having me. And I think it's exciting to be able to do this and then to have the two of you on dementia matters. So   I will be on the other side. And just so you know, I am the medical director of the Alzheimer's center, the director role would be nice, but that would be my boss. 

Virginia  01:24

Youre on the other side of the mic, Oh, is that? Okay? Yes. That's wonderful. Well, I must say that I love your podcast. And it's a pleasure to listen to. I would say our podcast spotlight on care focuses a little more on caregiving tips and dilemmas for caregivers, and your podcast seems to focus a little more on the side of science and research. Would you agree about that? And tell us about that?

Dr. Chin  02:07

I would agree. And I think we we speak to what we're most comfortable with and what we know. And, and so as a physician in a memory clinic and a researcher, I think the the scientific aspect comes naturally to me. And then based on my listening of your podcasts, it makes sense to me that you guys speak to this very important topic of caregiving in the experience of caregivers who are certainly involved in the process. And both are intertwined. And that's why we need multiple voices in this process. And I appreciate you adding that voice. 

Virginia  02:39

Very well said thank you. Thank you. Tell us briefly your personal experience with Alzheimer's disease. How did you get into all this with your career path and your life? 

Dr. Chin  02:51

it was quite jarring as I'm sure it is for people with families who who have a loved one with Alzheimer's. I didn't know that much about it. Even though I'd gone through medical school and was an internal medicine resident when it happened. I got called home and during my second year of residency, which is sort of training before you become a full fledged physician. So I was in San Diego at the time, and my mom brought my sister and I home and she shared with us that she was worried that my father had Alzheimer's disease and he was young. So he was 61 at the time. And he's he was our main family physician in our small farm town in Wisconsin. And so she really she had this family meeting and she she really had us and sort of faced this fear of what we were saying. He eventually got evaluated and was diagnosed with mild stage dementia due to Alzheimer's disease. He stopped practice that day. And and from there, I lived the next two years thinking about what am I going to do with my life. And so I thought I was going to do infectious disease. I trained in an undergraduate to microbiology. So that was my whole plan. And I didn't do that. And I, I did hospital medicine for two years as I was sort of thinking about what am I going to do with my life, both professionally and personally. And then time came that my wife said, we really need to go home. And she's from fortunately, she's from the same town.  And so we moved back so that we could be I call it secondary caregivers to my mom was the primary caregiver. So we were there to support her and to help my father. And then that really kept me in Wisconsin. And then I did my geriatric training my dementia training and here I am

Virginia  04:35

 he really did have early onset didn't he. 

Dr. Chin  04:38

So that's what's interesting. So we use the term early onset. When we think about it, traditionally, it's age based, so someone who's younger than the age of 65, we call younger onset, but pathologically or the science of it is there is a gene that predisposes someone that if they have this gene, they're going to develop Alzheimer's disease, but you can actually be younger and develop Alzheimer's disease without having that gene. And so the age is it's an indicator, but it actually isn't the end all be all. And there's no one else in his family that had it. And fortunately, he was a brain donor. And so he gave his brain to our research program. And actually, I was there for the brain cutting and to view those slides with a neuro pathologist. And he ended up having advanced Lewy Body disease as well. So it's two diseases. 

Virginia  05:29

So it's as well

Dr. Chin  05:30

yeah, so it's Alzheimer's and Lewy Body, so he declined quickly and developed it earlier, because he had two things, probably more, but at least two things. 

Virginia  05:37

How many years did he live? 

Dr. Chin  05:39

He lived for five and a half years with that. Yeah.

Virginia  05:43

That is kind of quick. 

Dr. Chin  05:44

It is quick Yeah.

Steve  05:45

So you mentioned being a secondary caregiver. And when we chatted, that caught my fancy, because I think there's a lot of people that are in this help helping the primary caregiver, talk about what you did and why your mom reacted positively to the whole experience of having you there?

Dr. Chin  06:07

Well, interestingly, I would say my mom probably demanded that presence. And she's she's a very strong German lady. And she was not she doesn't mince words. And so I think it was her expectation that my sister and I both were on the west coast at that time. And she wanted one of us to come home and support my father and in essence, support her she didn't frame it that way. But what is so important is that it's exhausting to be a caregiver, I don't have to tell you two that. And, frankly, caregivers often don't ask for help. And so I think indirectly, she was asking for help. So it was my job to address the things that she just was too tired to address or just didn't have the knowledge to. And so as a medical personnel, I was able to really help take care of all the medical issues, and to think about the medical part of it while she was doing the day to day caregiving. And then frankly, it was spending time with my father so that she could go and see her friends or go to the her own health visits. And that was really just spending time together as a family because that's what he really wanted. And so I then, of course, as his disease progressed, then I was doing more hands on things to help him he had bedsore had bedsore at the end

Virginia  07:18

was he at home. 

Dr. Chin  07:19

Yep, he lived and died at home.  Yeah. And so. So I call it a secondary caregiver. I mean, there are times where I felt like a primary caregiver in the moment. But it was really there to support her. And he really wanted my mom to be the person who was caring for him. And then I think Steve and I talked about this before, my wife was a tertiary caregiver, because she took care of me, because it's such an emotional roller coaster. And so there's so many layers of care. And I learned from that one caregivers have to be involved in the conversation. So my clinic, families are expected to come I want them to come. I talked to them, just like I talked to a patient. And then too, I know that they're going through a lot. So we have to talk about those things. Because the health of the caregiver can drive the health of a patient since they're so intertwined.

Steve  08:07

Let's talk about that for a second. Because I think you were in an opportune position to talk about the challenges that you saw with your mom. And from a medical perspective, that I think you know, as a caregivers, we think we're so strong, and we can handle anything. And the reality is we need support, you know, and we need as many people as we can that are going to be there. So what was it like supporting your mother? How did she accept or not accept your assistance?

Dr. Chin  08:36

Well, like you said, there are times where she would accept it, and be thankful. And there are times where she said, Absolutely not, you are the child, you don't get to make that decision. And I respect that, that relationship. But I would say there were times where I saw my mom was a beekeeper, because we lived out in the small, you know, in the countryside. And there was an incident where my mom, the bees got into her beekeeping suit, and she got stung a lot. And she hadn't we I was fortunately there, and we had to driv her to our local emergency room. And it was very dramatic. And she was fine. She got epinephrine just in case and, and I had to say to her, that's it. Get rid of those bees. It's not you becoming ill is going to be devastating to dad. And we have to protect you, even though something she was really passionate about and cared about. But she understood in that er that that was a very traumatic experience. So sometimes I had to force these conversations. Other times it was more he would come to visit me in Madison. They lived about an hour away. So he and I would spend time together while she would go and run errands and go did her own medical visit. And that was really gratifying. twofold. I got to spend time with my dad. But then I also knew I was helping her by offloading some of the things that could she 

Virginia  09:54

was she handling the finances of the family, 

Dr. Chin  09:57

she's doing everything. Everything I mean i was helping with medications and some of the medical questions, but no she was doing it was a full time job as both of you know, it requires everything of you. And certainly as the disease changes, you become tired because your sleep is impacted, you're exhausted from the physical nature of caregiving. And so I would help in that way I would, I would go and get groceries for her, I would go and do some of these things. That's easy and very simple. But I think were more meaningful because it just at least offloaded. Some of her responsibility 

Steve  10:29

sounds like you were pretty good secondary caregiver,

Dr. Chin  10:31

I tried to be, I would say,

Steve  10:33

 let's talk about how this experience influenced your choice of the career.

Dr. Chin  10:38

Well, so as I said, I really have been passionate about infectious disease, I really like viruses, I just find the microbiology interesting. And then all my my mentors were infectious disease doctors, and of course, it would have come in handy during the pandemic, I probably could have done some interesting things. But I wouldn't say that it hit me to my core, it was more intellectually stimulating. But it wasn't, it didn't feel as personal as I thought a job could be. And so after this experience with my father after a while, and this was still happening, so as I was researching, and as, as I was thinking about this, we move home, and I figure I'm moving home, I'm leaving this beautiful place that I didn't think I'd ever leave. And I should I want to make something of this experience this opportunity, if you could say that. And so I met with my the head of the geriatric group in Wisconsin, who was actually my he was what my attending when I was a med student. So years earlier, I had met him, and I told them, I want to do something with Alzheimer's, I don't know exactly what that would look like. But I want to be involved in this. I have skin in the game, I care about this. fortunately, this is where just, you know, timing in the right place. In Wisconsin, at the time, we were the only Alzheimer's research center that was based in geriatrics, and as an internal medicine, Doctor adult medicine, it's usually in neurology, and I'm not going to go back and do four more years of education to do neurology. And so I was able to do a two year fellowship, advanced fellowship, then doing geriatrics and memory care. And so I was able, he facilitated this process so that I could do exactly what I wanted, which was be in the room with people like my father and my mother, so that I could evaluate and care for people who are experiencing these changes.

Steve  12:36

How did your mother handle the diagnosis?

Dr. Chin  12:39

She knew it was coming. So I would say before the diagnosis that was probably harder as she was concerned, and noticing changes in my father and not knowing exactly what was happening. But she did a lot of research for months leading up to that family meeting with us, where she, at that point, figured it was going to be Alzheimer's disease. And so I think that was probably the harder part. What was a barrier is that my father is doing well, in all regards minus having these lapses. So really, was there something wrong? Was it just stress all the reasons that people think about, and even the primary care doctor, his primary care doctor thought everything was fine, too. And he scored perfect on all of these thinking tests. And so everyone said, No, there's nothing you know, it's probably stress or sleep more. 

Virginia  13:27

That is So typical,

Dr. Chin  13:28

 right? And so but she pushed and said, No, this is not right. I know him better than all of you.

Virginia  13:33

And you said your sister had a pretty good clue as to what was going on. She called you and she actually mentioned either Alzheimer's or dementia, when she would tell you that she was concerned about your father. 

Dr. Chin  13:45

So my sister what I think she was actually caught off guard the way I was until the family meeting. She was quicker to say no, I agree with mom, something seems wrong. I think I was the one who's most in denial at that point. And so she's, she started seeing changes after that meeting that made her feel like Nope, this is mom's right. This is likely Alzheimer's, or just some form of thinking change. Whereas I took longer for me to come around to that. And so we up after my mom, in essence forced this evaluation. That's when he eventually got the diagnosis. But there were barriers put up. And I recognize those barriers. And actually, it's one of the reasons I care so much about this idea of early detection, early evaluation. Because no one was to blame. The system was not set up in a way to allow for people with memory concerns to be detected sooner. Our instruments are dull, our questionnaires aren't appropriate. We don't put enough stock into the family with concerns and so there's just not time. 15 minutes is not enough time to talk about memory. And so now in my position, I'm investing more of my energy into how can we make this process better, but if it through that personal experience?

Steve  15:01

Well, that's a great segue, because we want to talk a little bit about your perspective of dealing now, on the other side of the bench, if you will, with other caregivers and other people with forms of dementia. What do you say to people who are either in your podcast about the issue of early detection? And what do you recommend, as the first step that people should take? When they when they think something's amiss?

Dr. Chin  15:32

So what and usually the first one that have concerns is the family a spouse or a child? And I will say to them, it's best to record what you're seeing, not as a way of showing it to the person saying, look, you've made these mistakes, but so that you can keep track of the things you're noticing, because you will question yourself, you will question whether or not you're right or not. And so having these things written down allows for you to say no, I did observe this, there are these mistakes are these issues, these symptoms, so that when the time comes to have a family meeting, and ultimately everyone has a family meeting of some kind, you feel prepared for that. And it feels funny, because you feel like I'm hiding something from my loved one, because I'm not encouraging people to confront at that point. But it allows for you to have space to write down the things you're seeing and worrying about, and then potentially researching yourself. And then when you're ready, you meet to have a team, so that you can talk to the person you're worried about. And ideally, that leads to an evaluation, you go in to see your primary care provider. And then you start a process, many things are reversible. Our minds inherently jumped to Alzheimer's disease. But it could be depression, it could be medications, could be sleep apnea could be your thyroid. And it is our job in the medical side to look for those things first, because there they are present. And so if we can treat those things, then people might actually feel better if it's not present, and it really is a brain disease. When the earlier we get to that the more we can do it, the more we can talk about it, that you can get into research of course that's my bias with my other part of my job, and you can get into clinical trials, we could start other medications sooner. But ultimately, we can talk about this more, break down the fears, and move forward feeling confident that there's something we can do.

Steve  17:23

You mentioned a big word that we've heard over and over again. And when you work one on one with other caregivers, you hear this word fear. It's like the C word was 40 years ago, you know, I've got cancer, or in this case, I'm afraid to even get tested because I might find out right? Or evaluated. So how do you help the person understand that this is nothing to be afraid of? Because the ultimate? How do you deal with this issue of fear,

Dr. Chin  17:56

I acknowledge it, and I and I embrace it, because I think it's completely understandable to be afraid. Many people fear dementia more than they fear death. And so nothing's really going to take that away. But what I can talk about is the quality of life of a person living with dementia, we can, which can still be quite good. I can talk about ways that we can slow symptoms of decline, I can talk about ways that we can reframe what's happening so that you can still enjoy the time you have, we're all going to die at some point. And we don't know what's gonna cause it and we don't know when, with a diagnosis of dementia, that puts a little bit more time or a little bit more perspective on that timeline. And maybe that forces you to do the things that you've been putting off. I will have conversations with my patients and families. You've wanted to go to Italy for the past five years, now's the time to go, go and live. 

Virginia  18:52

What a good idea. 

Dr. Chin  18:53

And so we use that. And not in a good way meaning like no one wants to be diagnosed with dementia, but it can force a person to embrace the fact that we are all going to die at some point. You are at your best right now things will get harder in the next years, you should do these things now. You haven't talked to your child in X number of years, now's the time to reconnect, if that's important to you, which I would imagine it would be. So we use that to push people I call it lovingly push people to do the things they probably wanted to do and would have done maybe 30 years later.

Virginia  19:30

You know, I've never thought about that. But that's true. Because it's not going to get better and better through the years it's going to get a lot worse. Do these things now.

Steve  19:45

 So it sounds like you're you're actually becoming a consultant like a Life Consultant here in an interesting fashion where you're dealing obviously with the disease or the perception of this disease, but you're also advising them about their stage of life and where they should go and how they should do things. Isn't that a little different than most doc's? 

Dr. Chin  20:09

Yes, I was, well, geriatricians we have training in palliative care. We're not palliative care experts but palliative care is this wonderful field about lets align your health conditions with your goals, your values, let's talk about the future. geriatricians are experts in in aging and getting older. So we combine these two perspectives. And then certainly, I'm not speaking on behalf of all geriatricians, I come into the clinic visit differently. Because I've lived this, you know, I was the secondary caregiver. So I know what it's like to be in that third chair in my clinic room. And I know what the other two people are experiencing, because I've talked to them. And so I jokingly will tell my colleagues, both geriatricians and neurologists, I have a street Credit that not everyone has, I will say things to families that don't think other providers are comfortable saying they might agree with. But it's not comfortable to say it, because I've lived it. And my patients tend to know my background. They think a lot of patients look up their doctors ahead of time, which is good. And so they know my experience, I don't I don't hide from that. And I actually explain that to people. And I think that that allows me the space to tell people that I think things that matter, these life coach things that are not medical, they're based on experience. And I think that actually is more impactful than oh i have this drug for you. I think letting people know what things will look like down the road and things we can do that are not medical or medicine based, are actually probably more meaningful to the family.

Steve  21:44

Well, you've touched on this word, geriatrician, why don't we go there for a little bit? I think I mentioned when we chatted, I had no I mean, I understood it was a term. I didn't really understand what the role was. I did and I'd like you to speak about palliative care again. But what's the why is a geriatrician approaching things from a different perspective perspective, then a neurologist?

Dr. Chin  22:09

Well, neurologists are true experts in the brain, like a neuropsychologist, who's a PhD, and does a lot of cognitive testing. Neurologists are physicians, though they have a medical degree. And they understand so much about neurons and the cells that help neurons, the diseases of the brain, as well as the nervous system. So they do four or five years of their own education after medical school, all brain related, I mean, primarily stroke, primarily movement disorders. And then some of them will do an additional two or three years in what's called cognitive and behavioral neurology. Those are true experts in Alzheimer's and dementia, it's extra training that not everyone has to do. And many of them will become researchers. So I get to, I have the privilege of being able to work with some of them. And so it's a different perspective, because they're very brain focused. Then on that, I don't think they would disagree with me saying that geriatricians on the other hand, we have training in adult met Well, I guess you can do it from Family Medicine, which is kids to adults, or internal medicine, which is what I did, which is adults only 18 and older. And you then do more training in people 65 and older. Because to think that a seven year old is the same as a 20 year old is just foolish. And so we specially after we've done three years of internal medicine training, we do an additional one to two years in 65 and older. So we are we are more we have more experience in aging in frailty, and having multiple comorbid or health conditions being on multiple medications. And then we are really quite trained in nursing home care, in hospital confusion, types of care. And then Memory Care falls. So there are certain things that we just tend to call geriatric syndromes that we tend to focus more on. But ultimately, we focus holistically. And that's a common phrase, but we really do look at beyond the biology of a person to their social issues to their mental health issues. We tried to combine everything. And as a result, we look at Alzheimer's differently. a geriatrician looks at Alzheimer's as merely a piece of the things happening to people. And so we involve our team right away. So social worker and nurse, neuropsychologist, physical therapists, occupational therapists, we don't try to do it alone. So inherent, to our training is this idea of a team. And that's relatively new.

Steve  24:43

Yeah, that's a different approach than a neurologists approach. At least that's my experience, but you're talking about time, in a sense that I, my experience with it and my my conversation with others is every time a visit happened, it was it was brief with a neurologist. Sometimes not, I mean, mine. Pattis was terrific. But in fact, we were always waiting. We were always a half an hour to 45 minutes late, but we weren't. But that's what happened. But it was it was fabulous. I guess my question is that the industry is so driven by efficiency. And you're now as a caregiver, and you're looking at how to get the best care, would you recommend that the geriatricians are going to be spending more time versus a neurologist? Or would you recommend where it Where should you start in this game? Or this journey? I should say when when you're, you've got concerns?

Dr. Chin  25:48

The reason that's a tough question is so much of it is regional dependent, and then institution dependent. Because each healthcare system is going to approach it differently. You ultimately start with primary care, and they have less time than anyone. But once you have a diagnosis, then you could go to a specialist, like a neurologist, but they might not have as much care or much time either. But there are there are these things called collaborative care models or memory clinics. And that usually is and that can be neurology, lead psychiatry, lead or geriatric lead. And that is a team based approach. This is not unique to Wisconsin, many great programs involve a team, those are usually longer visits. And so you inherently in a memory clinic, there is more time built into it. And then I would say geriatrics inherently does have more time I have an hour with my patients, which sounds crazy. But I have an hour and I do bill for a full hour or more. But based on the time leading up to that visit, and so 

Steve  26:48

but you're covered for that hour, 

Dr. Chin  26:49

I'm covered for that hour, there's no other expectation other than I'm talking to a patient in their family. 

Virginia  26:54

Nice. 

Dr. Chin  26:55

Yeah. And that I don't know how common that is. I will say geriatricians usually have more time than any other field. But interestingly, right, geriatrics does not make money. And we think of ourselves as money saving for healthcare institutions, because we see the most complicated patients, and we help them along their journey. But we're not generating revenue, the way a surgeon generates revenue.

Steve  27:18

So my conclusion after a long time now is that there's nothing wrong with starting your relationship with a geriatrician and adding neurologists rather than the other way around. And that this combination of both is powerful. And, and you need if you've seriously got like, I loved your example, where your mother pushed for this evaluation, because sometimes the internist is like, oh, everything's fine. Patti had the five questions. And that was it. I was like, I don't know. No. But I didn't either i accepted his opinion. So that's very helpful, I think, for our audience.

Virginia  27:58

I'm curious, are they starting to train hospital personnel a little bit more thoroughly on dementia. When my mom had dementia between 2005 and 2013, our hospital visits were just awful. They, it seemed to me that no one surrounding her knew what Alzheimer's was. It was frustrating to me. She would rip out her tubes and such and it's like they would call someone in but they weren't terribly kind with her. They didn't really understand where her mind was, are they starting to train people a little bit better on this.

Dr. Chin  28:44

I would say yes, I would say more and more providers of all kinds are understanding what dementia is delirium, which is acute confusion. That often happens in the hospital, more and more hospital physicians, nurses, nurses assistants are learning more about this and being prepared for it and the proper approaches for it. Dr. Sharon Inouye from the east coast from I think she's at Harvard, she's really led this huge effort into educating delirium, which is primarily hospital based, although it occurs at home too. And so there's more and more education. But that happens to be primarily for physicians and nurses. But more and more students in healthcare are learning about dementia, as well as delirium, and both are important. And so yeah, so ultimately, the goal is people don't have to have that experience or prevent people from going into the hospital when at all possible. And so yes, more and more education is happening at all levels of health care.

Steve  29:50

Can we go back to this evaluation for a second? Because you've obviously performed many evaluations what what's involved In it briefly in from your perspective of the things as a caregiver that you want to expect from a valued or quality evaluation.

Dr. Chin  30:11

Yeah, and I'll go, I'll go briefly for you see, because usually this is like an hour long talk that I do in for different physicians. So from the caregiver perspective, what they should prepare for is that they are needed at the visit, they should not have the loved one go alone. Because what we really want is history, history is the most important thing. So we want to know what the person is experiencing. And then we want the cult the family member to tell us what they are observing.

Steve  30:38

Again, let me interrupt you. Again, we're back to this point about keeping a record

Dr. Chin  30:42

when that's helpful. I mean, it makes it easier. But we want to know, when did it start? What were the initial symptoms? What has it been like over the past x months? or years, depending on how long you wait? And then we're going to look at reversible factors. What about your thyroid, your depression or sleep apnea? If they're present? What about things that we can treat? And then ultimately, there will be some form of cognitive testing or thinking test. And that's where that's a separate conversation, too, because there's many debates as to what's appropriate. You've you talked about five questions. That's not enough, right, we need to do more thorough testing. And so but some form of thinking objective thinking test. And then from there, it's blood work a head image. And then probably true, legitimate thorough testing, and I mean, one to three hours of testing. And then an expert, like a neurologist, or a geriatrician coming and talking and putting it all together for you, you're not going to get a diagnosis at one visit. So for a caregiver, it takes time. And I know that people want answers right away. So it's good to get started early, but it's going to take multiple visits to figure this out. 

Steve  31:50

Well, that presents a problem, because the caregiver might be more interested in it, and of course, making the time available. But we're running into this fear factor. Again, well ill go once. But I'm not going to second or a third time for for more evaluation. So how do you deal with that? How do you set the stage for that with the patient,

Dr. Chin  32:08

and we see this a lot. And so that's why the first visit so important and building the rapport is so important. Oftentimes, at the first visit, we will do some form of thinking tests just so that we can get it in because if they don't come back, least we have some objective score. 

Steve  32:25

When you say some form of MOCA, what do you what do you? 

Dr. Chin  32:28

Yeah, I mean, this is where I think there's a lot of debates. I like the MOCA, I think it's a better test for mild cognitive impairment in general. And I tend to see people coming in sooner. I don't think a lot of these tests these three question tests, they can tell you maybe more advanced dementia versus not, but that's not as helpful because people are coming in sooner. So yes, I tend to favor the MOCA. I don't have an arrangement with MOCA. So I don't have any sort of obligation to them. But I will say, when possible, I explained to people reversible factors, modifiable factors, and that there are things we can do, even if you do have a brain disease like Alzheimer's. So my buy in with the patient is that if you're willing to stick with me for at least a few visits, I will focus on your quality of life and your well being. Even if the end result is this is Alzheimer's and I don't have a cure for you. I will work on your sleep, I will work on your physical activity, your mental activity, I'll try to reduce your medication load, I will try to get you to be as functional as possible. I will make sure that your wishes are aligned with what your family is hearing. 

Steve  33:38

So you're building trust

Dr. Chin  33:39

 I'm building that relationship and it's more than just the brain disease. So I'm trying to help them holistically. And I do get buy in from that because we all want that.

Steve  33:49

Well, let's go on to talk about clinical trials. I think we want to touch on that since that's a big part of what you do. And I want want to make sure we have enough time. 

Virginia  33:58

Yes, we we want to discuss. I know you're really involved with clinical trials. But I wanted to just mention in here that your last podcast number 178. Oh my gosh, that was so good. A guest Cindy Ciara from Texas was talking about let's see you've titled it "from caregiver to research participant partner". And her mother did not want anything to do with being in a clinical trial, by golly, nothing. She ended up in one. And it's been a very positive experience. Your podcast was great. I just thought I'd plug number 178 on dementia matters. Right talk about clinical trials. 

Dr. Chin  34:42

Well, I did want to say that you know, so I worked with Sarah Walter, up at USC USC and she's a part of the clinical trial network and you know, she's so connected to participants as we are and as UCI is. And it's such an important voice, the participant the study partner or whatever term we use for the family that comes with them or the friends that come with them. And what we're trying to do is put a voice. So we call the series voices of participants, we want listeners to know that the experience of the research participant in their family matters. It influences the type of research we do, how we conduct research, whether or not people are going to come back and do longitudinal research, whether they're willing to give us their blood, their brain. And so all of these things matter. And so we need to know, what is impactful for them. So this was a four part series, we have three more individuals coming out. Over the course of this year, it was really exciting. And I tell you, it was so meaningful, to be able to talk to these participants. There's a lot of emotion in these conversations. And we wanted to capture that because this isn't not everyone enjoys every aspect of research, and that's okay. But we want to know what is meaningful, and what we can do better. And so thank you for mentioning that. It's a different type of podcast. But what you guys do with this idea of the caregiver, this idea of the person on the other side of the table, well, they matter a great deal.

Steve  36:10

There's something about the way you talk, that's amazing. 

Dr. Chin  36:13

Thank you. 

Steve  36:14

You have this calmness and this positive attitude about what you're doing. And it's evident.

Virginia  36:24

I totally agree. We need more of you. Clown you everywhere.

Dr. Chin  36:29

Thank you. I don't want clones of me though.

Steve  36:33

Well, let's talk about your registry a little bit. Talk about WRAP. 

Dr. Chin  36:38

Yes. WRAP the Wisconsin registry for Alzheimer's prevention. Actually, the doctor that geriatrician who started WRAP, Mark Sager was the doctor that diagnosed my father. And so he started this in 2001. geriatrician scientist, but more I would say, more of a geriatrician and a great one at that. And he started this group, he said, you know, we need to know about people at risk for Alzheimer's, we gotta go sooner than the patients that we're seeing in clinic. And so you formed this registry of pretty much children of those who were affected. And you had to be a certain age and i mean we had to have certain inclusion criteria, but we wanted to study them over time. And you will not find a more loyal, dedicated group of participants, than the WRAP participants, and I know I'm at UCI, and they're great participants here too. But you will not find more dedicated people than WRAP participants. So we've had we've been going on since 2001, we the average duration of a WRAP participants, 12 years, they've come in six or more times to do lumbar punctures, PET scans, physical exams, they're there for about six hours. Four hours of thinking tests so we have a lot of data. So it's a great study. At some point, I don't have the year for you, this brilliant researcher named Sterling Johnson took over. This is once doctor Sager retired, and he brought a new edge, a new viewpoint to WRAP. And he's a he's a neuropsychologist, so it's cognition driven. So we are trying to understand what impacts thinking ability, which, of course, is what we care about. You know, as a person, I'm not sure we care about the changes in our brain, we certainly care about symptoms. And so he's very focused on that as well as the changes in the brain. And so now we are very focused on cognition and biomarkers, this idea of a blood test or a PET scan that reflects what's happening in the brain. And so we have over 1000 PET scans that are amyloid based 700 PET scans that are tau based, and I'm not sure if there are other other programs or single studies that have more than us. And I'm not trying to be competitive, I'm just trying to reflect what our participants are willing to give. And then the investment that Dr. Johnson and the whole WRAP team have given to study this, it's we're able to make some pretty impressive conclusions and involve researchers from all over the world who can have access to all of this data, 

Virginia  38:58

you share that information. 

Dr. Chin  39:00

yup They have to they have to apply for it. But as long as it's a scientifically valid question, we share that data. With permission of our participants. Of course, they have to say it's okay.

Steve  39:13

You and I spoke about this thing called new new drug therapies and the pros and cons of that. We'll talk about that as we conclude here.

Dr. Chin  39:25

Yeah. So because of our ability to detect Alzheimer's disease in living people, and in people who have not yet had symptoms we call preclinical that opened this opportunity for drug intervention, the whole course from preclinical to having symptoms and the main therapies right now that everyone talks about, although it's only a segment of it, it's called monoclonal antibody therapy MAbs. And there they are an infusion base when we think of them like chemotherapy, you hang a bag and it goes into your vein for about an hour and then They're very effective at getting into the brain stimulating a response breaking down this first protein of Alzheimer's called amyloid and removing it. And we've shown this now we, the scientific community has shown this through three drugs and each drug gets better at doing it. One of them is FDA approved. It's called Leucanamab So that is being used both in research and in clinics now. And there's it's hugely debated as far as not its ability to remove amyloid. But is it effective for the person, which I'm glad we're debating that because that, ultimately, is the most important thing. There is a roughly 30% slowing of decline in over 18 months when people are on this drug I'm very careful about how I phrase that right. So 30% slowing, you are still declining with this therapy, but it's slower. And so people will ask is that meaningful. And so that's what's being debated, there are side effects like brain bleeds and swelling. And so those are things and it's a huge impact on the healthcare system. So these are things that people have to consider. But it's approved, Medicare covers a good percentage of it. And so there are clinics across the country starting it. But Steve and I talked about earlier was that, while exciting, and I'm very excited about the beginning of what I think is a new era, there are impacts not only to the person receiving it, the patient, but also the family, you are in essence prolonging a period of caregiving too, right, so you're changing how the caregiving experience is, we don't know the impact of these drugs on behavioral and mood symptoms, they're studying this, which is good. But that changes the caregiving family perspective. So there are things we have to understand this is relatively new, and the studies are short. And so we have to know 10 years later, what does this look like? So it doesn't change the important things that we've talked about. In the caregiving that's involved, none of that's different, or none of that becomes less important, it becomes more important, arguably, because the person is experiencing thinking change for longer.

Steve  42:09

Yes. And when you said that, I clicked into the two reactions, I would have one the reaction of the person with the disease thinking, Well, wait a minute, do I really want to live longer? And secondly, the reaction is the caregiver, which in my case would have been, I'll take all the time I can get. And of course, where is it in this process? And what's the reaction of both parties? And how do you talk your way through all of that? I mean On the surface It's like, hey, great. But really

Virginia  42:42

I think it comes down a lot of times to quality of life. I looked at my poor, dear mother, the last two, three years, and I felt so sorry, for her was she happy? No, not really.

Dr. Chin  42:56

both of you, right, have different responses to that question, right? You want longevity? You don't. Longevity is not your number one priority. 

Virginia  43:05

That is true

Dr. Chin  43:06

right? And so everyone's going to view this differently. But that's important to know, and be able to talk about, because not everyone's gonna say, this is meaningful enough. I want to continue. And not everyone's gonna say, You know what, I, we I'm comfortable letting this person go. These conversations,

Steve  43:25

But Patti actually asked me twice to help her die. 

Virginia  43:29

My mom did too. 

Steve  43:30

And, and so that's why I'm saying even in my mind, it would be a debate, here she is saying I don't want to have to live this way. And where does this drug come into that process? So it was like a whole, like, a light went off in my head that I hadn't thought about. So I wanted to make sure we covered that. Well, we're slightly over time, which is great, because you've been fabulous. Absolutely. Fabulous.

Virginia  43:54

Thank you so much for coming here today. All the way from Wisconsin. We got you out here.

Dr. Chin  44:00

Well, thank you for having me. 

Steve  44:02

Nate, I just have to say that we need more people like you, at least in my perspective, I'm not dealing with the medical community like you are. But you outta find ways to go out and talk about your perspective. And especially talking to people who are considering a career in medicine. We all know what's coming. And we need more people like you. We need more geriatricians we need more people that have this kind of commitment and involvement. Amen. You would be you need to do that. 

Dr. Chin  44:33

Well, thank you both.

Virginia  44:34

Thank you so much.

Steve  44:37

Spotlight on care is produced by the University of California Irvine Institute on memory impairments and neurological disorders. UCI mind interviews focus on personal caregiving journeys, and may not represent the views of UCI mind. individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to The spotlight on care podcast wherever you listen for more information visit mind.uci.edu