The Dementia Caregiving Crisis with Neal Shah | A New Approach to Compassionate Care

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Welcome back, everybody, to another brand new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and I'm really excited to be here today with you all and grateful that you have chosen to spend part of your valuable days with us. And we've got a really special guest here with us today. I'm going to introduce you to him. His name is Neil Shaw, and he is the CEO of a corporation that is called Care Yah Yah Health Technologies. And as I told Neil when we talked before, Yaya is close to my heart because that is exactly what my grandchildren call me is Yaya. And a lot of people don't even know that that is a word that, you know, a lot of people use Nana. My kids call me Yaya. And so I thought that was pretty special that we had that connection. But Care Yaya Health Technologies is a social enterprise that does research, lab research, advancing health equity for aging populations that was named one of America's top 50 startups for 2025. I mean, what a huge accomplishment. And Neil also brings his personal experience as both a dementia and cancer caregiver to his current work. He's an NIH-funded healthcare researcher focused on aging and caregiving, leading artificial intelligence projects at Johns Hopkins University to improve care for older adults. And this is really exciting, innovative stuff. So we're going to let Neil tell us all about what CareYaya does, what it's all about, how he came up with it. And we are going to start with one of his core pillars of his organization, which is caregiving for aging populations on the boomer horizon. Because we're the ones that are aging quickly and starting to develop Alzheimer's disease and related dementia. And he has got our backs. So, Neil, with that said, why don't you take it from here and tell us a little bit about your company and all the exciting things that are happening with it, and then let us know exactly what you guys do.

Sure. Yeah. Thanks, Lisa, for such a warm introduction and exciting to share with your audience. You know, I think that we are heading into, if not already in, a caregiving crisis, you know, in our country. You know, we have a rapidly aging population. You know, the oldest of the baby boomers just started turning 80 this year. You know, if you kind of think about when World War II ended, 1946, you know, here we are, 2026. In the next 5 years, we're going to have a historically unprecedented wave of people turning 80. That's typically the age when dementia rates and probabilities skyrocket. By 2030, our country will be more people above 65 than below 18. First time ever in recorded human history. So we're heading into a big demographic shift that I think is going to impact a lot in our society. I learned this firsthand and I started Cariaya because in my mid-30s I became a caregiver. I went through a very long caregiving experience for my grandfather through dementia. And I kind of realized how broken our caregiving system is and how little support there is and how that results in so many families bearing the burden on their own. I think family caregivers are like some of the, you know, most hardest working and empathetic people out there in the country, and they're getting the least support from government and private sector. So they're bearing a lot of burden on their own. And, you know, in our case, like my mother ended up quitting her career to become a full-time caregiver. So it was really eye-opening for me. After he passed, actually, my wife went through a multi-year cancer battle where I became her primary caregiver. So I've kind of gone through this firsthand twice and realized just caregiving is so under-supported. And, you know, I kind of wanted to do something, so I shifted the whole focus of my career and my work into improving things for caregivers, you know. So that was kind of like the genesis of how this came about. And I saw that given how fast our society is aging, I thought that there was going to be a just absolute epidemic that was going to crush millions of middle-aged people as it came their turn to care for aging parents. Some of the innovations that we've done, I'll talk through, and where I think kind of the opportunities are, are, you know, in thinking through what are the problems in care. Number one, there is a massive shortage of people doing care. So if you are a family caregiver and you need some affordable help, there aren't people around to do it. And if you get lucky and find someone, the prices are way too high. Why is that? My entire hypothesis is the care industry is completely broken. The way these home care companies work is that they typically charge in most cities across America $40 to $50 an hour, and they turn around and pay less than half of that to the care worker. The rest goes into sales and marketing profits, franchise fees, overhead, and all that other stuff.

I was just reading something recently where somebody posted an article that said baristas receive more training than dementia caregivers.

And more pay, you know, and more pay. Why would you ever do this? You know, why would you ever do care for someone, you know, if you're just like trying to make income when you could work at Starbucks, you could work at Walmart, you could work at McDonald's, anywhere pays better. And by the way, compared to barista, caregiving is very, very psychologically, emotionally, physically demanding work, as we all know from our family caregiving experience. So how could we as a society expect somebody to do this for— in my home state of North Carolina, the average caregiver makes $12.50 an hour.

You think there's something wrong with this picture?

Yeah, I'll tell you. I'll tell you exactly what's wrong with this picture. Okay. The companies, the companies and the way the private sector treats caregiving. You know, I think it's absolutely absurd. And, you know, I don't mean to offend anyone. It's just my observation. So apologize in advance if somebody is listening as a home care agency owner. But these home care companies, in my area charge $40 an hour and pay the care workers, you know, somewhere in the low teens, like $12 to $15 an hour. They keep the rest of the money for themselves. That creates two problems. One, how many families can afford $40 an hour? Not a lot. So if you need 40 hours a week of caregiving because you have to go to your job and you need somebody to sit with your mom, you know, that's adding up to $1,600 a week. You know, over the course of a year, it's like $80 grand. And then the care worker is making $30 grand. So the care worker is barely able to survive.

And as we all know, there's no subsidy for dementia care for in the home, or if you don't already happen to have a long-term care insurance policy, or you qualify for veterans benefits that will pay a stipend for care either in-home or in assisted living or memory care. This is all out-of-pocket expense.

Exactly.

Yeah.

Exactly. So it really— the affordability issue crushes families, and frankly, the quality issue, because the care worker is not being paid well. So one of our earliest innovations, which I kind of observed from my years of being in caregiver support groups, was healthcare students out there, pre-medical students, nursing students, you know, some of our young people who want to go into clinical careers, are amazingly empathetic and passionate people who want to help people in their communities. We started mobilizing them as caregivers, and we made them available through our Care AI platform to be able to be digitally booked, scheduled, paid, et cetera, for no fees or upcharge to anyone. So across America now, we're running $20 an hour caregiving platform where all the money's going to the students. So through the innovation, and anyone can check this out, Cariaya.org, you're welcome to do it, and it's all like grant and social impact funded. We charge families nothing. They can book, schedule, and pay caregivers near them who are pre-medical or nursing students at, you know, good universities in their area. We're now operationalized at approximately 35 universities. We have 50,000 students on the platform, and you can get it for $20 an hour, and all that $20 goes to the students. So I thought this was like a very simple, common sense type of innovation based on years of what I observed. You know, the best kept secret in family caregivers was people would try to go through care agencies, find that, hey, I'm spending way too much money, I can't afford it, the care workers aren't very good. Then many people would post flyers at church or ask local support groups, where can I find informal caregivers? And then many people who took the time and effort would find ways through universities nearby them and asking professors and saying, do some of your nursing students or medical students, you know, want to help? So there's already a very robust informal care market happening like that. But for most, it's a lot of manual work. So we said, okay, we'll do that work for you. We will find the students, vet them, interview them, background check them, make booking and scheduling easier, almost like Uber does, you know, with getting a ride or getting a taxi, you know, where you can just kind of do it very conveniently and affordably. So that was our first innovation. And the multiple reasons for the innovation were, one, I just thought costs of care were way too high. So a lot of families can't afford it and they're priced out. So by doing it at $20 instead of $40, you significantly expand affordability. I thought the quality of the care was low because the care worker's not getting paid much. So the care worker's turnover is very high and many people leave. I thought by paying the students the fair share, in this case, all of it, makes them very motivated. And of course they want to go into clinical careers anyway, so they're already naturally motivated. So it makes them show up much better and do a better job of care. And then I thought the whole streamlining the booking process through digital booking, no contracts, kind of none of these business tactics that the care agencies use allow much more seamless and simple experience that a lot of what I, you know, what you would call sandwich generation caregivers, you know, busy middle-aged people who are still trying to manage their careers. They would prefer an experience like this instead of the old-school method where the local care company sells you, makes you sign a contract, and, you know, do a lot of manual paperwork. So that was kind of like the, the early innovation in a nutshell. And I'm shocked that after running it for 3 years, it's grown from a local grassroots effort into this like very large thing that's spreading around the country. And I'm also very pleased that we're making a tremendous social impact on many, both people who would be priced out of the care market and encouraging a lot of young people to step up and address the care crisis. Which I think is—

well, I have to say that what you're doing, you're an absolute godsend because this is exactly what our communities have needed for as long as I've been around this industry, which has been 50 years, 30 professionally, but 20 dating back to my first experience with a family member having Alzheimer's disease. So you raised a good point. You mentioned the sandwich generation. Tell us exactly how this new sandwich generation— and when we say sandwich generation, we're referring to adult children who are caring for an elderly parent, but they also have children still at home and they're sandwiched in between the two generations. So how, how, what have you been observing in terms of how this sandwich generation factors into elder care?

Yeah, thanks for the question. You know, over 20 million people are in this sandwich generation, you know, caught between caring for aging parents and children. Interestingly enough, this is a lot of women who quit their careers. Most people think it's because of childcare. Actually, over 60% is because of elder care, because childcare is now universally acknowledged and recognized and by many employers supported. Things like maternity leave policy are commonplace now. Support for a daycare center, some large employers even having the center on site. These were things that didn't exist that much in the 1980s and 1990s. But I think thanks to a lot of pressure and movements and social awareness, now childcare is recognized as like, we need to offer some solutions in order to support working parents of both genders, but specifically women. Elder care support does not exist, you know, minimally. And Harvard Business School had a big study on this, that what does the sandwich generation need? Something like 33%, the highest number on the survey was elder care support. 33% of people request. Only 6% of employers even have anything around that topic. And mostly it's, oh, let me get you some counseling with a social worker. So no one offers actual caregiving support. So I think it's a big gap in terms of what employers are providing versus what employees are needing. And as a result, many people are scrapping it together on their own or potentially taking time off from work to manage it. Pass, you know, turning down promotions, being passed over for promotions, or sometimes just leaving the workforce entirely to do it themselves. When the cost of elder care in America is $82,000 a year just for 40 hours a week to get care through a care agency, you have to make pre-tax over $120,000 just to then pay the tax and then spend all the rest of your remaining money on paying the care company. So, you know, most people, unless they have like high six-figure incomes, they'll just be like, maybe I should do it myself. So I think that, yes, the sandwich generation is experiencing an enormous crisis. And if we don't want millions of people to drop out of the workforce, I think we need to do caregiving innovation to address the cost and affordability. But I also think we need to reform and pressure the private sector into start addressing this issue and supporting employee caregivers. And I think we need to change government policy. You know, why doesn't Medicare cover any respite care? You know, they pay $30,000 a year for dementia drugs that unclear if they even work. But they spend $0 for you getting a caregiver in your home. And everybody knows that does work. Getting a caregiver in your home reduces nursing home admissions and it improves the health of the family caregiver. So I think these are common sense things that the government isn't doing and the private sector isn't doing. And I think you can build advocacy and create pressure to change the system.

And everything you are saying coincides with, and this is just something that's total, Totally coincidental. I just recently was asked to write a magazine article for San Francisco Magazine on this very subject, on how corporations are supporting employees because all of these things are happening with this sandwich generation.

Yeah.

And also, we have to be mindful that the World Health Organization and the Alzheimer's Association are, are trying to prepare us that by the year 2050, if a cure or treatment is not found, the number of people— and you touched on this a little bit— that are expected to develop Alzheimer's disease are, are— it's estimated it's going to triple from the number of people who live with it today. And this is worldwide. So we're looking at, you know, another— almost like a pandemic of Alzheimer's disease. And I think you are probably about the closest thing to helping society prepare for this that we've ever had. So we are now going to segue right into what the future of dementia care looks like. For him? For— you know, in his mind's eye he's very vision visionary kind of guy obviously so I can't wait to hear what he has to tell us!

Yeah thanks Lisa Skinner Skinner Skinner. So I'll share a few things one, you know, so where I live in the American South dementia rates are expected to go up over 50% in the next four or five years, you're right it is absolutely epidemic but And I think it's partly because of the aging population. I think it's partly because social isolation triples the risk of getting dementia. And we just went through a multi-year pandemic where people had to isolate, especially older adults. So we're coming out of that, but I think the brain impact is pronounced. And then also early signs suggest even mild COVID infections that people recovered from resulted in neuroinflammation in the brain that suggests very typical of early Alzheimer's pathology. So I think with these three factors, you know, if a boomer's turning 80 in large numbers, as well as isolation and COVID, we are about to have an epidemic of dementia. And heading into that, I think that there is a lot of opportunity to help people. So where I think technology is making promising strides, stuff that we're working on and stuff that I see other people working on are both in screening. You know, I think dementia is significantly underdiagnosed and underscreened. Many people don't catch it until too late, and usually it's due to lack of resources. It affects both rural populations that sometimes don't have access to a neurologist, Something like 37% of Americans live in a neurology desert where there isn't a neurologist within an hour plus of them that can even make a diagnosis. So that's where we see a lot of technology tools helping. We're working on a big project with Harvard and Mass General developing artificial intelligence tools that can simply help with cognitive screening over a voice AI phone call off a landline. So help you kind of screen fast through just a natural language conversation. Even process biomarkers in your voice and then help warn you and/or the family member that, hey, maybe it's actually time to drive 2 hours to a neurologist because you have a higher risk and you should go do a proper assessment. So I think tools like that are going to be breakthrough of just like being able to access, improve accessibility to care for a lot of the population. I also think there's a lot of tools coming around caregiving. Dementia caregiving is one of the most under-supported things that I've learned myself and in years of support groups. Less than 11% of family caregivers going through dementia get any sort of training. I think it's our medical system almost views it as, okay, we gave you the diagnosis and here's a pamphlet. And then, you know, you as a son or daughter or spouse, it's like you're on your own at home. So meanwhile, you're supposed to become a doctor and a nurse and a physical therapist and a social worker all at the same time suddenly when you're 50, 60 years old and you've never done any of those jobs before. And I think that's very hard. And by not covering caregiver training, a lot of people end up making mistakes. Their loved one ends up in the ER, they themselves end up with a lot of stress and burnout and even potentially their own health issues. So AI is becoming a promising ground. One of our biggest NIH-funded projects is that, that we've developed an artificial intelligence-powered caregiver training system that again, we're giving, you know, all of our innovations are free, so we give this away for free. To individuals to practice, learn how to do care, understand and personalize who is the loved one that you're caring for, what diagnosis do they have, what skills do you currently have, and then let's upskill you through bite-sized, 2 to 3-minute personalized videos of the next skill you should learn and then give you short quizzes. So I think things like that are very promising innovations. And then I also think there's a lot of cool innovations happening that I see in neurotechnology. Ability to kind of like use non-invasive interfaces and put on your head. I know it sounds very futuristic, but brain-computer interfacing is improving. And we have been working on some projects just kind of on the side as almost like a research lab to see if we can help people who have lost ability to communicate, who have, for example, aphasia, be able to visualize and try to communicate through an interface what they want to say. It's early stages, but there's some interestingly promising signs. And I think that is gonna be, if I had to make a bold prediction over the next 5 years, I think brain-computer interfacing technology's gonna get really good. And a lot of people who are unable to communicate might actually be able to communicate. So we might be able to restore that.

How do y'all address comorbidities?

Yeah, that's a great question. So comorbidities-wise, I think, again, speaking about like, 'cause we're located in the American South, diabetes is a massive comorbidity.

Yeah. And cardiovascular disease.

Agreed, agreed. Cardiovascular, yeah, another big one. You know, we ourselves don't do a lot in that realm. We try to manage and guide people to nutrition programs that we can recommend, but you know, we are not the innovators of those programs. Interestingly, on the diabetes side, I have seen some amazing results from non-pharmacological diabetes reversal programs out there that I'm like blown away by. And I'm surprised these are not more widely known. So I do think there's some help coming. One interesting thing, which I have mixed feelings on, is these new GLP-1 weight loss drugs. Many people I'm finding are actually quite successfully managing their diabetes and frankly their obesity and just like overall weight levels through those drugs. However, I do think there are also some pronounced side effects that are unintended that I'm seeing a lot of people experiencing. So I'd say the jury's still out. But between that and between the non-pharmacological diabetes reversal programs, I do think that big strides can be made. And then one positive side is I do think regardless of your opinion on politics and etc., I do think the public awareness through the Make America Healthy Again movement is resulting in a lot of people realizing that, hey, food does impact your health, sugar levels and what you eat and ultra-processed foods maybe should be significantly reduced. And I think that population health is going to change over the next, you know, 3 to 5 years, which I think it couldn't come fast enough. You know, like chronic disease and diabetes rates are skyrocketing, which means future dementia rates, you know, are going to be skyrocketing. So I'm very happy about that.

Wow. Well, unfortunately, we are out of time today. We'll just have to have you come back and continue this conversation because this is absolutely fascinating. And I think it's what our future holds for— And you know, as I mentioned, I've been exposed to the dementia world for 50 years now, and the change has come incredibly slow. And it's really just been in the last few years that we're starting to pay more attention to everything we talked about today. It couldn't come fast enough for me, but hopefully it'll just, you know, go at lightning speed now and things will change dramatically because we've been stuck in, you know, a quagmire of quicksand for decades. So anyway, I am just so pleased to hear that you're doing what you're doing and there is a lot of hope now for all of us who have family members who have lived with one of the brain diseases that causes dementia, and that, you know, it's looking promising that things will literally change themselves more rapidly than they have. I was going to ask you one more question.

Oh, sure.

Just out of curiosity, I noticed since COVID there's been a pivotal shift in the US, and I just wanted to hear your, your comments about this, because culturally the United States doesn't typically, or hasn't in the past typically, taken care of our elderly parents. Yeah, like a lot of cultures do. I've seen that changing since COVID because of what we saw in the high incidence of death due to depression and isolation and also COVID itself.

Yeah. Are you—

have you noticed that since COVID that, that we are changing Do you think that culturally we are taking—

Yeah, I think so. You know, I think, obviously, I don't think it's happening fast enough, but I'm glad that it's changing, and I do think it's changing. I think there's a few things going on. One, the former Surgeon General, Dr. Vivek Murthy, put out a great book, which I would recommend to anyone, called "Together," and it's the art of connection in a lonely world. And he basically framed it right before COVID as loneliness, especially in our older adult population, is an absolute epidemic. Obviously COVID made it way worse. And he was saying, if you're above 65 and your self-report is lonely, which by the way, 37% of people do, if you self-report as lonely, it's worse for you than smoking 15 cigarettes a day in terms of predicting if you'll die early. So loneliness is an absolute epidemic. And I think now, unfortunately, it's happening to our young people too, because they're glued on their phones and social media. So I think that, you know, COVID has certainly accelerated awareness of that. And I think public movements to kind of reduce loneliness have now spread. The WHO has now, you know, piggybacked off that, and they're calling loneliness an epidemic. So I do think that's changing. I also think the baby boomers, you know, if you kind of think about the assisted living and the nursing home industry, it really grew in the 1980s, 1990s, and 2000s. So baby boomers have the experience of putting their parents in those facilities, oftentimes in the last few years. And now, as the baby boomers become the predominant kind of aging population and seeing what happened during COVID to people who lived in those places, many of them unfortunately, very sadly died and couldn't spend time with their family during their last days. Boomers are really hesitating, like, do not, I've heard from so many people, it's like, I would rather die in my house than don't put me in a facility, they're telling their kids. So I think that the preference has shifted tremendously. And I think on a positive side, technology and affordable care is enabling people to stay in their home longer and age longer. And then I think finally is I would credit the media and social media to this. Societal attitudes are changing as people build awareness about aging and caregiving. As now, you know, Martha Stewart was on the COVID of Sports Illustrated, right? Like, I think this wouldn't have never happened 20, 30 years ago. So I do think that people are recognizing that aging isn't something to shy away from and something to embrace. So I, you know, I think there are a lot of positive trends going on that might build a culture that more respects its elders and cares about, you know, the aging population, not just their own parents, but even older people in their community, in their neighborhood. Um, so I think that's a pretty good thing. And I, I see this every day. You know, we have so many thousands of 20-year-olds interacting with 80-year-olds, you know, through our care platform that are not their grandparents. And they're learning a lot about what it's like to be an older person, talk with people who have completely different views and completely different even backgrounds and upbringings than them. And I think that it's benefiting both sides, bringing people closer together. So yeah, I'm excited about that. And I think the change couldn't happen fast enough.

I couldn't agree with you more. So anybody who is as fascinated as I have been with this conversation by Neil Shah, you can find out more information about him and his company at careyaya.com. So make sure you, you take some time to further look into this really, really exciting time in elder care. Thanks again for being with us. I'm Lisa Skinner, your host. I will be back next week with another brand new episode for everybody, and in the meantime, have a great rest of your week. Stay happy and healthy. We need y'all, and I'll be back next week with another episode for you. Take care for now.

Bye-bye. Thanks, Lisa Skinner Skinner.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.