The Future of Caregiving with Kat McGowan

Episode Transcript

Dr. Correa:
From the American Academy of Neurology. I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters. And this is the Brain and Life podcast. So Daniel, one of my favorite ways to listen to our podcast and to other podcasts is of course to use my cell phone. I get plugged in with my headphones, or I guess these are my earbuds, but I'm old enough to remember a world long, long ago without cell phones, without gadgets. Now I even have bags for my gadgets, so it's like a whole other thing. But Daniel, I believe you're younger than me. Do you recall a time before all the tech?

Dr. Correa:
You're saying all that and I'm looking around and I'm just like, I'm literally surrounded. I have a camera looking at me, my phone, headphones really, I think and my wife would laugh at me. I have three different types of headphones all near me. But I am totally of that generation that saw the before and after is the way I think of it, before so much of the tech that's in our lives now. My early childhood was, oh my gosh, pre-Nintendo. We relied on playing outdoors and then coming home or waking up with a bowl of cereal and watching the weekend morning cartoons.
Of course I had loved playing the Nintendo when it came out. And that was mixed in as our childhood. And then throughout our school years we saw as computers move from a typing class lab into each of the classrooms and to our desks, our homes, and now into the palm of our hands. And now through that we're listening to and hearing from perspectives and stories from around the world. I mean, it's crazy. And who knows what's next.

Dr. Peters:
I agree. And once we learned how to engage with technology, it really does become indispensable. I sort of freak out if I can't find my smartphone. But what I think is really next is could technology not just be a vehicle for us to talk or listen, but actually give us a purpose? So I got to speak to a journalist named Kat McGowan. She has a scientific background actually in neuroscience, and she's written articles for Popular Science and Scientific American and also for the Audubon Magazine. And our conversation really wasn't about the writing in those magazines, it was really about her own experiences with caregiving for her parents who both developed dementia and how interacting with robots, yes, higher level technology, actually robots that can help give dementia patients a purpose, giving them a social purpose.
And in Japanese, this is called ikigai. So I had a lot of fun with this discussion with Kat McGowan. Check it out. Hello Brain and Life podcast listeners. Thank you for joining us today. And I'd also like to welcome Kat McGowan to our podcast. Kat is a journalist and editor, and in 2022 she was awarded a fellowship from the Alicia Patterson Foundation to cover caregiving. Her work has been featured in Popular Science, Scientific American, and another favorite of mine, Audubon. I'm a huge fan of Audubon.
In addition to exploring and understanding caregiving, she has led projects on health equity and edited for the autism new website Spectrum in 2016 and 2017. Recently she shared her experience with caregiving for her parents and how robots or robotics helped in that caregiving relationship. Kat, welcome to the Brain and Life Podcast.

Kat McGowan:
Thank you so much. It's lovely to be here.

Dr. Peters:
So where are you joining us from today?

Kat McGowan:
I'm in Oakland, California, where it's just slightly, I don't know, it's what they call rain in California, which means it's a heavy mist.

Dr. Peters:
I know. I remember this would be the time of the rainy season. I went to medical school at Stanford and so totally know that neck of the woods and just love that whole area. And so I gave a quick introduction. Can you tell us a little more about yourself?

Kat McGowan:
I've been a health and science reporter for many years. Actually I started studying neuroscience. My undergraduate degree was in neuroscience and then I worked in a lab at Rockefeller University. Torsten Wiesel who at the time was the president of Rockefeller and had won the Nobel Prize for work on the visual system. So I worked in that lab for a while and ended up going to journalism school because it always seemed to be the best fit for me. And I covered neuroscience, but also genetics and a whole cancer, a whole range of health and science topics, mostly focused on biomedical research, not entirely. And then caregiving happened to me first with my sister-in-law who developed a rare neurological illness that was eventually diagnosed as progressive supernuclear palsy.
And your listeners probably know about that, but most people don't. It's related to Parkinson's, it's in that family. She's still around. We've been taking care of her for a while. And then my parents sort of both as they got older, began showing signs of dementia and I became more and more involved in their care. And honestly, that experience kind of radicalized me. I saw how difficult caregiving could be and how it underpins so much health care and so much of the medical system, but isn't really recognized. And I was really struggling with their care and I thought, I have so many advantages in life and I know how the medical system works. I know how to talk to doctors and yet this is still really hard.
So at that point, I switched to really reporting on caregiving because it's an important public health issue and just general social issue that doesn't really get a lot of coverage. More specifically, this is about unpaid family caregiving, mostly for adults, but also for people with disabilities. And that's really what I've been doing since about 2021. And the Alicia Patterson Foundation Fellowship was really terrific in terms of helping me kind of make that transition and being able to write ambitious stories about that.

Dr. Peters:
Well, first of all, I say thank you so much for taking on the challenge of writing about caregiving and giving really a face and a voice to it because it needs to be out there. And I do think it's really a pervasive issue. I'm a neuro-oncologist, I treat patients with brain cancer. And the caregiver experience is so critical and so important. And I will also say that it's very varied. It has a lot of nuance to it. It can be different whether the caregiver is a partner or the caregiver is a spouse, or the caregiver is a friend, or the caregiver is a parent or even a child.
So it can vary and change and be quite dynamic. Now you mentioned your fellowship from the Alicia Patterson Foundation. Can you tell us a little more about that foundation and how your story or particularly your, I guess, advocacy work on caregiving, how that came to be?

Kat McGowan:
I mean it's really a terrific... Alicia Patterson Foundation has been around for a while, started by Alicia Patterson, who owned newspapers back in the day. And it really values kind of the individual reporter who has a mission to cover a subject in depth. So one of the things that's really terrific about it is it's all kind of juried by other journalists who evaluate the proposals. And it's not about sort of what's up and what's down. It's really about do you have a really strong idea for what you want to cover and can you show that you're going to cover it seriously and in depth?
And then they just sort of say, "We trust you to do..." I mean, you have to report back, but there's not a lot of... They really believe in journalistic integrity and in kind of allowing people to take the course and cover the stories. So I'm really grateful to them for that opportunity. Through them, I did stories for the Boston Globe. I started working with NPR Online, who I'm still working with now. And I was able to do this kind of more in-depth story for Wired, exploring social robots and dementia, something people talk about a lot. But I was able to kind of take a little bit of an unconventional angle because I had the time and the support to do that reporting.

Dr. Peters:
So tell us now more about the robotics and about caregiving. How do they exist together and how can they be helpful to one another?

Kat McGowan:
I mean, I'll tell you from the beginning, I looked into this and I wanted to say at first the story is maybe not about what people immediately think about, which is sort of like, "Oh, robots who could help get somebody out of bed who's having trouble transferring or whatever." And it's not about the kind of robots that would be like, "Oh Mary, did you take your pills this morning?" These roboticists are working on social robots, which is a whole different component of robot research because it's not so much about the robot being super strong or able to do really dextrous tasks like a typical robot in a factory. It's about how robots can connect with our social instincts.
And it's really uncanny, even if you read all the research and you talk to all the researchers, I had this experience, read all this stuff about how robots trigger all of our social responses, whether we like it or not. I was like, "Oh yeah." And then you actually go into a room full of social robots and you can't help but feel like there are eyes everywhere and they're all looking at you and they're all... You have this very powerful sense of social presence, even if you are sort of well armed, to resist that sense. It's just hard, I mean, I hate to say hardwired, but it is very deep in the human psyche. So what was so great about talking to these roboticists is after kind of hearing a lot, my parents both had different forms of dementia and hearing a lot about just the negativity around dementia.
I mean for good reason, right? It's not easy. But I saw in my parents a lot of spirit and human emotion and kind of curiosity that was still, it was different as they did as the dementia progressed. But it was still very vibrant and very real. And these roboticists that I met who were working on robots for dementia, they took that for granted. It wasn't to them... There wasn't a question about whether people with dementia sort of could connect to robots or become interested in robots or could... What the amazing thing they were doing is involving people with dementia in the creation of these robots. So they didn't just create something and then kind of inflict it on people with dementia. They said, "You guys come in here and you tell us what you think. Do you like this? Is this working? What do you want this robot to do?"
So they were really working... They take it very seriously. They were really working in partnership with people. And these are people whose dementia is not that severe, but most of the people I met, but there are actually other roboticists who I interviewed who are working with people even with severe dementia, and they find ways to incorporate their feedback in the things they're doing. And just the level of respect and interest for the experience of dementia, I thought was so... It was such a breath of fresh air. It was so interesting. And through them, I met a bunch of people who have dementia and are sort of activists for improving inclusivity for people with dementia who are out there trying to give people with dementia a voice.
I just thought these were really interesting radical ideas and I was really glad that I got the chance to explore it more.

Dr. Peters:
And I loved how you talked about how when you were in the room with the robots and the robotic, I guess I'm sort of trying to visualize what it would look like. I mean, the first thing you probably engage with, and you know this is the visual system, that something's there, right? That you engage with it visually.

Kat McGowan:
And it has eyes.

Dr. Peters:
Exactly. It has eyes. But I guess were there other senses that the patients with dementia were using? Was it tactile also? Was there auditory?

Kat McGowan:
In some cases.

Dr. Peters:
How does that happen? How does that engagement happen?

Kat McGowan:
So I'll tell you, I interviewed Selma Sabanovic, who's at the University of Indiana. I'd talked to her a bunch on the phone and then I went to visit her lab. And then I came into the lab when they were in the middle of the meeting and I was late and I sat down because I was like, "Oh, I'm late, I'm late." She has a big group of graduate students and undergrads and stuff and they were all talking about this project too with QT, who is a research robot. He's not a product you'd buy on the shelf, something that researchers use. And as I was listening to them talk about it, and then I sort of got this funny feeling and I looked around and I realized all over the lab there were all these older social robots. I mean, there's social robots that date back to, I think the late nineties or the early 2000s.
And so first I just noticed they all had faces. They looked really different. One of them was literally just a little, looked like two tennis balls stuck together. And it had eyes so you sort of was like... And they all seemed to be sleeping, you didn't get the sense of machines that were turned off. You got the sense of creatures that were sleeping. And then they showed me, they put some of these robots through their paces. The one that is probably the most familiar and has been used in research the most is PARO, the seal who was created in Japan. It doesn't talk, it looks like a baby seal. It's very carefully designed to really look like a baby seal. And it actually voices seal cries that were recorded from real baby seals. And it's very much a tactile experience. It doesn't talk, it doesn't do anything that a human...
It doesn't try to be a human, but it is very responsive, almost like a baby animal would be. One of the things about it that makes it so successful is that it's not intimidating and it kind of draws you in. It makes you want to get close to it because it's cute and it's fuzzy and you touch it and it moves and responds to you. It'll arch its back, it'll turn its head to you in very natural ways. It's actually been used a lot and it's been studied a lot in Japan to see kind of effects on people. And one of the really interesting things that the woman I was researching, I mean the woman that I was interviewing had done was research that showed that it does alleviate depression in a kind of a nursing home setting. And it increases kind of engagement in social behavior.
It turns out that it's not that people want to socialize with the robot, it's that the robot brings people together, it brings them closer, they're all looking at it, they're touching it, and then they're talking about it. Or somebody will walk by and they'll be like, "Hey, look at this thing. Look at what it does." So that's one of the amazing things is the ability that a robot like that has to sort of spark human connection. The robot is not the object of the connection, it's between the people, but they sort of incorporate the robot into their social group.

Dr. Peters:
So were they able to find that if there was a robot involved, that there were more social connections, that those people were more apt to socialize?

Kat McGowan:
Yes, absolutely. And with each other, not just playing with the robot, they were... And that research has been around for a while. So the research, I was there... It is really great. And the research I was there to witness is sort of taking the next step. So there's this more humanoid robot who I met named QT, and it uses artificial intelligence. At the time, it was an earlier version of ChatGPT to talk to you. It's very cute and inoffensive. It's about two and a half feet tall. It's white, it's got a very cute face. When you turn it on, it says, "Hi, I'm QT the robot, would you like to be my friend?" But the idea there, what they're doing at the lab is trying to create different ways that it could engage with people to kind of strengthen the power of the seal effect and give people a way to engage and maybe creatively engage with the robot.
I mean, they're really experimenting with a lot of things that would kind of both enable social interaction and the real goal of her research, in part because it's partly funded by the Toyota Research Institute who has big ideas for what they want to do with social robots in the future. And she's focused on this particular response in Japan, there's a Japanese word for which is called ikigai. And what ikigai means, to the best of my knowledge as I talk to a lot of Japanese people about this, but I'm not Japanese, is this sort of deep sense of purpose and social meaning and kind of being a citizen. There's a little component of that as well. So say if you helped your neighbor, you got her snow off her driveway, if you helped your neighbor by sweeping snow off her driveway, that might make you feel ikigai.
Or maybe if you just did a good day's work, that might be generating ikigai. It's just a sense of purpose. And her team has recognized that that's something that's often missing in people with dementia. They want to be engaged, they want to feel like they're contributing to their community and other people. So could this robot kind of help them figure out ways to get to ikigai? Could it, for instance, remind them of things that they could do to help other people? Like, "Hey, maybe you should call your friend. She always really wants to hear from you and she's been sad." Or the robot could say, "There's a meeting today for people who are going to clean this park. Do you want to be involved in that?"
That's the goal anyway. But really they're just doing a lot of research at this point to figure out what would be the best use for this robot. And the fun part was just watching... I went to the nursing home where they're testing this out with people with dementia and met a bunch of the people who live there, and we all kind of played around with the robot together, and it was really fun and interesting to see how that works.

Dr. Peters:
And I think I love the idea of it. It's ikigai.

Kat McGowan:
Ikigai.

Dr. Peters:
Yes. I find that fascinating because it is a sense of purpose, but it's almost like when we go and we evaluate a patient in clinic, we always say they're alert and oriented times three, person, place, and time. But there's also the orientation to having a purpose and a goal in life and in the quality of life, we always use the moniker of being, belonging, and becoming. So being is who you are, belonging is who you're belonging with, and becoming is really your future. Or it could be your ikigai, it could be your purpose and what the future holds. It's a very hopeful prospect.

Kat McGowan:
I'd never heard that before. I wish I'd known that when I was writing the story, because it really fits with the kind of approach and the mentality that these people are taking, that just because you have dementia doesn't mean you don't have a future and you can't... That was one of the things that was so cool about being able to witness this research is so much of the talk around dementia tends to be either very sad and focused on loss, or it's all about the past. It's like, "Oh, let's reminisce. Let's pretend we're in the 1950s or something like that." This is all about the future.
This is all about like, "Look, poor people with dementia can be involved in the creation of something that is very forward-looking and feel like they're participating in science, they're bringing something new to the world, they're involved in a project that's really pretty adventurous and experimental." But I had never heard that formulation before that you just recited. But it's great. I like that.

Dr. Peters:
You can quote me. So being, belonging, and becoming, it's one of my favorites. And I think that's what I use when I talk to my patients about quality of life. And so I have just a few more questions. First of all, how accessible do you think this is now or feasible for patients? If you had a loved one, where do you think it's... Is it going to come to nursing homes? Is it going to be able... Are we going to see it in our skilled nursing facilities? How can this be incorporated?

Kat McGowan:
No, it's a really important question, and in a short answer, it's not there yet. And it's not even close to there yet. I mean, robots, as cool as they are, they require... It's really hard to create something that can function on its own in the world without a lot of expert help kind of behind the scenes reprogramming it and setting it up in the right circumstance and situation. The context for robots is super important. You got to have a human being like, "This is where the robot can help, or this is where it belongs." So the reason I wrote this article about it, and some people reached out to me saying like, "Oh, I'd love to have, can I buy this robot?" But it's just not practical, but what is new and something that I felt like contributes to the way we talk about dementia now is just the mentality and the attitude of the people who are researching it.
Which is, again, it's very forward-thinking, it's very hopeful, it's very embracing of the whole reality of what it means to live with dementia. I wrote about the robots. It really has a way to write about the people who are inventing this next generation of robots. And honestly, who knows what this will become? I mean, Toyota Research Institute has this vision of a future in which older people will live supported by all kinds of assistive technology. They have these very cool... They actually are building this whole world in Japan to beta test everything. So they're very ambitious about that, but they see it as a very long-term project. And so it's all about just experimenting now and trying out all kinds of different ideas.
So it's fun to see that, but it's not really practical in terms of the expense and the expertise needed to bring that into, say, a nursing home or assisted living or something.

Dr. Peters:
[inaudible 00:22:43] it allows for creativity in the spot that needed some creativity, and it did not need to have more sort of doom and gloom associated with it because so much of dementia is, they're declining or they're becoming more frail. And we've had some other really great caregivers. I can remember interviewing Kitty Norton who just had her movie, Wine, Woman, and Dementia who talks about sort of living with dementia rather than dying with dementia. And so if you get a chance to listen to that or watch that movie, I think you'd enjoy it. Well, Kat, thank you so much for joining us today. I love that I learned about ikigai, and I think I'm going to know that it's your ikigai to make this known for our caregivers and to continue writing.

Kat McGowan:
Thank you so much. It's terrific to talk to you.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.

Dr. Peters:
Hello, Brain and Life podcast audience. And of course, thank you for joining us today. I am your co-host, Dr. Katie Peters, and I'm honored to introduce our medical expert, Dr. Jeffrey Kaye. Dr. Kaye is the Layton professor of neurology and biomedical engineering at Oregon Health Science University, and is the director of the Layton Aging and Alzheimer's Disease Center, as well as director of the Oregon Center for Aging and Technology, also known as ORCATECH, I've just learned. So Dr. Kaye received his medical degree from New York Medical College and trained in neurology at Boston University. He completed fellowships in movement disorders at Boston University and in brain aging at the National Institute on Aging. Today we're going to explore a little more about how robotics can benefit our brains as we age. Welcome Dr. Kaye.

Dr. Kaye:
Thank you. Glad to be here.

Dr. Peters:
Absolutely. I gave a short introduction of you. Could you tell us a little more about yourself and where you're joining us from?

Dr. Kaye:
Sure. So as your introduction noted, I'm a neurologist by training, and I've worked in what I think we would call academic medicine for over 30 years, but have maintained a practice seeing mostly patients with neurodegenerative disease, Alzheimer's disease, and related disorders. And my research has focused in that area. Since 2000 or so, my research really focused further on specifically the use of technologies and digital tools in research, and obviously hopefully to be applied to clinical care and treatment. And as you know, the word digital and technology has a lot of implications or conjures up many different views and different people's perspectives.
But in general, there is a plethora of technologies. I think maybe later in our discussions, we'll talk somewhat about robots, but people are very familiar with their phones and apps and wearables and autonomous vehicles. So there's a large universe of things that can be brought to the health space, and particularly the Alzheimer's and dementia space.

Dr. Peters:
It is so true that we have so many gadgets, and my co-host and I were just talking about the whole variety and myriad of gadgets that we interface with. And if they can be used for, I guess, the good to advance science and improve people's quality of life, it's so important. Now, I mentioned that, and you also mentioned that you see patients with dementia and in particular Alzheimer's disease. Could you tell us a little bit more about what dementia is and what is Alzheimer's?

Dr. Kaye:
Excellent, important first question really. So dementia is a umbrella term, if you will, that really just is a description in a clinical sense of an individual who develops a cognitive change, that is a decline, really. It's often in the memory area, but it can be other areas of thinking like language, use of visual perceptive abilities. But it has to progress to a point where it actually affects daily function. And so that combination of cognitive decline affecting daily function is by definition a dementia. Alzheimer's disease is believed to be the most common cause of that clinical picture. There are many others. If you're a splitter, there's 600 or so. If you're a lumper, there's several major forms with Alzheimer's being the most common.
Alzheimer's is a brain disease. The underlying problem in the brain is a pathology that's been known and described since Alzheimer's time and the turn of the last century, early 1900s, which is really defined by the presence of what have been called amyloid plaques, which contain this protein called amyloid. And another lesion really, which is neurofibrillary tangles, which have a predominant protein associated called tau. And so that combination of pathologies has defined in the brain Alzheimer's disease. It's important to realize that just because you have those pathologies doesn't necessarily mean that you automatically have dementia.
And this actually has created a challenge clinically that people now may be worried that they have the pathology, but they aren't necessarily impaired yet. And that's because of the advances that are being made recently and being able to identify in living individuals that people actually harbor these pathologies in their brain when they may in fact not be cognitively impaired or functionally impaired.

Dr. Peters:
I think that's fascinating. You mentioned sort of lumpers versus splitters, that goes back to Darwin. It's its own, talking about taxonomy and how do we put something in a box and how do we describe it? Actually, it wasn't Darwin, that first coined that, it was actually Newman who was a botanist, I believe in 1845. So weird fact. I did a talk recently on lumpers and splitters. So I love that you brought that up. But I guess one of the questions that I have now, because you mentioned that you can have a pathology in the brain, or you can have a test that's positive, but you may not actually have Alzheimer's, you may not have dementia. Can you describe to us why?

Dr. Kaye:
Well, that's actually the, from my point of view, the answer to that is a Nobel Prize winning answer.

Dr. Peters:
Great.

Dr. Kaye:
So the actual reason how those pathologies really then relate to sufficient dysfunction in the brain to cause the clinical manifestations is not truly known. Probably one of the most fascinating and important observations in recent years has been in those individuals who have what might be called genetic or autosomal dominant, if you will, Alzheimer's disease. That is they carry a known mutation, a genetic mutation that if you carry that mutation, it has always been believed to be almost certain that you will develop Alzheimer's disease, the clinical manifestations. Most of those genetically caused Alzheimer's diseases have an onset of by the time you're 40.
So these are families that are noticeably concerned, 50% of their family members will get dementia. But in doing research in these populations, it's been found that you can follow people with these genetic mutations who are strangely, if you will, living into their seventies, but they're not demented yet. We know they have in their brain these pathologies. We know they carry the mutation. And so what's been found is that it appears that they have a favorable genetic profile such that they have protective genes.

Dr. Peters:
Fascinating.

Dr. Kaye:
So the reason I bring this up is that understanding what may be brain resilience, it's possible up to 40% of people in their eighties and nineties will have amyloid in their brain, but may not be demented at all. So why is that? It seems to be a necessary, but not perhaps sufficient cause, if you will, of the clinical manifestations of those pathologies.

Dr. Peters:
Well, that is just fascinating, and I think that now that we can detect Alzheimer's and detect these plaques, what do you do with that information once you detect it? Do you just follow the patient or is it usually the patient will have symptoms and that would prompt you to do the testing to begin with?

Dr. Kaye:
So this has created a transformation of practice, I think particularly among clinicians who are focused in this area. Although, the primary care community deals with this every day. You have an older person who is concerned about their memory, or a family member is concerned about a family member's memory, and what do you do about that? And so the classic way of approaching that would be to do perhaps some memory tests or cognitive tests, take a careful history, is this disrupting their function and then trying to make a best diagnosis of what's causing it. Is this Alzheimer's? Is it one of these other forms of dementia? Is it vascular disease? Is it another kind of dementia called Lewy body disease?
But in the end, it's been a clinical judgment, but now with these other tools coming online, it's possible to say, "Well, actually, you have a ton of amyloid in your brain because we did an amyloid PET scan, and it appears on balance that this looks this is caused probably by an amyloid or an Alzheimer's process. So then the next question is, which obviously patients and families always ask us, "Well, what can we do about it?" So in the olden days, which is five years ago, we have a number of symptomatic treatments that were developed back in the late nineties. I mean, I think the first one was donepezil or was marketed as Aricept, which was approved by the FDA in I think 1996. And then there were a couple of others that came along in the early 2000s or so.
But these seem to have some slight benefit to a person's cognitive function. One was not able to demonstrate, they delayed the actual underlying development of the pathology, the progression of the disease process itself. So they've been used over time. They're not... I think are people not... I don't have patients coming to me and saying, "Oh my God, it's amazing how much better my husband or my wife is now that they're on this medication." But for some people it helps, some people it doesn't. And now there's this whole area of antibody therapy that's come on board. So these are antibodies, these are targeted to the amyloid to sort of get the amyloid out, if you will, and they actually do a very good job of doing that.
In general, I think there's a controversy in the field really in terms of how effective these medications are. I mean, probably the biggest disappointment for all of us in this field is this is not a cure. I mean, I think that there was some hope that, "Man, if we could get all that amyloid out, we'd see dramatic effects." And I think everybody would agree that it's not dramatic. And so in some ways you could say that we've proven that if you get all the amyloid out of a brain or a lot of it, it's not a cure. So we're probably going to need to do more than just that. But in the interim, there are these antibody therapies out there, and I think honestly, we're trying to learn their role, how effective they are in the real world.
Clinical trials are critical and important, but we always know that when treatments get out into the regular world, there's all sorts of things that we learn about how effective they are, what side effects they are, how the public sees them as being useful or not, and they're expensive, of course.

Dr. Peters:
Absolutely. I think one of the things that I sort of thought of just with your discussion is this is not a disease just of the patient. It's a disease of the entire family and the caregiving unit and your care partners are so important. So I would assume that A, the testing itself is probably expensive, next disease, new medications, and then they have to also have a good quality life and acceptance by those care partners too.

Dr. Kaye:
That's so important. There are, I think, about 7 million people in the United States with Alzheimer's, and there's 11 million caregivers because people will have two family members, and the caregivers ultimately are critical to the success and quality of life of the person with dementia as it evolves. And it changes over time. I mean, I think this is one of the most challenging aspects is it's not a one and done sort of thing. It's not like you have pneumonia, you take an antibiotic and your caregiver has helped you through a week of feeling lousy. This is a much longer illness over time, and it's heterogeneous. So some people have very different problems as it progresses.
Probably the most difficult are more towards the later stages when there may be behavioral changes. And it's difficult for a caregiver to be present 24/7. There may be safety issues, things like that, because the person doesn't realize that there's problems with them driving a car, using a stove, things like that. And so I'd be remiss in focusing only on the drugs. I think there's an important part of, certainly in our practice of working with the caregiver and preparing them for what's ahead, even if the antibody therapies are not going to stop the disease, if they have a great response, it may slow it down, but ultimately it appears to progress. And so being prepared is the most important.
If you ask caregivers, and particularly after they've gone through the journey, this difficult journey of caring for somebody, would you rather known sooner or later, and inevitably they will say, "It would've been better to really understand what this was all about earlier on." So to be more proactive rather than kind of reactive as one goes along.

Dr. Peters:
So now let's bring sort of the, I guess, robotics or robots or technology into the mix, and how can we be proactive with them for our patients with dementia and with just aging?

Dr. Kaye:
So I think one thing that's really important upfront is to kind of define what do we mean by robot?

Dr. Peters:
I would love to know.

Dr. Kaye:
Again, in the public mind, I think they're probably more thinking about among the most famous robots, R2-D2 or C-3PO from Star Wars. Actually, even if you think about those two robots, the form factor of those two robots was very different. At some level, a robot is, you might say, is just a non-human, artificially intelligent agent who could be a companion, a source of information, an instructor that really uses artificial intelligence of various kinds to provide those qualities to an individual. I mean, the idea that we can use robotic conceptualizations to assist people early in the disease process is very important and it's happening. I think that's clear. I think what's currently a big part of the research is what's the best way to use these tools?
And it's the classic... There are many studies, not just in dementia, but using apps, reminder apps, and the problem of being oversaturated with information. How do you keep people engaged or how do you remain more of a help rather than a hindrance? And there are many ways to do that, and studies of looking at gamification can be helpful, but there's many people who hate that. So you have to be open to realize that in that use case, you have to understand that it's not a monolith. We talk a lot about personalized medicine, and so I think that there's a great opportunity because technology can be very adjustable and specific to that individual.
I mean, you can imagine having a companion robot who comes in with a generalized model of how to answer and interact with the person with dementia or the caregiver, but then actually is learning as you go along by the responses that the robot is getting. So it actually becomes more specific, more personalized as one goes on. How does it work? Let's not kid ourselves. And so there's a small number, but again, not unlike the other study that shows that people with dementia later stages seem to be less agitated, for example, when they use these companion pets as they're often called. Not everybody. Do they improve quality of life for that patient who's in a later stage of disease?
That's a perception we have of a caregiver because at some point, the person isn't able to communicate with us exactly how they personally feel directly. So we have to kind of look at how they appear in their everyday world and interacting. Do they seem happy, content, safe, and having a good quality of life?

Dr. Peters:
I like the idea that there seems to be something very purposeful about it. And when I talked to Kat McGowan, she mentioned the concept of ikigai in Japan of having a sense of purpose. And she felt within her writing that these interactions with these "robots" gave those patients a sense of purpose that they were lacking and taking care of something or knowing you have to have something with you, it may be a simplistic form of purpose, but that can continue to be beneficial, I would think.

Dr. Kaye:
Definitely.

Dr. Peters:
So I just want to thank you, Dr. Kaye for this discussion. I want to see where robots go to help us. I do have a little robot on my phone named Finch. I have to feed him. I'm not very good at it, but I hope others are, and I definitely want to learn more for the future.

Dr. Kaye:
Well, I very much enjoyed our conversation and I appreciate the opportunity to speak with you today.

Dr. Correa:
Thank you again for joining us today on The Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life magazine for free at brainandlife.org.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain and Life magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at neurodrcorrea.

Dr. Peters:
And Dr. Katie Peters joining you from Durham, North Carolina and online at Katie Peters, MD, PhD.

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The Future of Caregiving with Kat McGowan

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