SPEAKER_00 0:00

Welcome to Retirement Navigator, the podcast for adults 55 and above who are ready to make the next chapter their best one. I am your host Kwame Kwade, co-founder of Next Chapter Media and adjunct professor of finance at Johns Hopkins University Kerry Business School. Today we are talking about something that touches almost every family at some point: caregiving and long-term care. As we live longer, many of us are not only thinking about our own retirement and aging, but about how we will care for a spouse, parent, or a loved one and who will be there to provide that care. Our guest today is Robert Espinoza, founder and CEO of the Care Works Project. Robert has spent years examining how we can build better systems for aging, caregiving, and the people who provide care. He previously led the National Skills Coalition and served as Executive Vice President of Policy at PHI. Today he's helping leaders rethink what care should look like in a rapidly changing world. Robert, I am excited to have you today on the Retirement Navigator Podcast. Robert, welcome to the Retirement Navigator Podcast. I'm really, really excited to have you.

SPEAKER_01 1:33

Thank you for having me. I'm also excited about this conversation.

SPEAKER_00 1:37

So I want to start. Um so before your policy work, um, before your congressional testimony, you were an English major and a journalism major. And um my research showed that you graduated Sumakum Laudi in both. So it appears to me you came into long-term care through writing. So let me ask you, as a writer, what is the story that America tells itself about caregiving that is simply wrong?

SPEAKER_01 2:08

Yeah, it's a great question because when I think about writing, I think about stories and broader narratives. And I was interested in journalism and creative writing and English, um, specifically because I wanted to tell different stories than what I thought was being covered on the news and what was what I was reading, right? I wanted to quote several people before me. Um, I wanted to write the book that I wasn't able to read, right? Um, I think the stories that are not being covered in American media, especially top-tier media, are stories that offer solutions to caregiving problems, right? We do see an increased level of media coverage for the challenges that family caregivers face, the issues facing direct care workers, home care workers, and nursing assistants. We saw quite a bit of media coverage during the initial stages of the COVID-19 pandemic for nursing homes. Um, and we've seen more and more coverage that covers different aspects, some phenomenal award-winning investigative feature stories, for example, right? My struggle with the media coverage, and I was studying this as a fellow at the University of Chicago this past year, is that so often, even the most deeply researched, intensive feature stories on caregiving and long-term care don't offer the reader a solution that goes beyond what they can do as people and what more as what we as a country should do as systems. In other words, they frame the problem as, and sometimes often when it's done well, the problem is both individual and systemic. But when it comes to the solution, they don't propose the systemic solution, right? What are the precise policies that we need as a country to resolve whatever story and problem they're addressing? What are the ways in which industry leaders, businesses, um funders, philanthropic investors, others can really make a difference that makes that solves the problem at its root and have would have prevented the problem from the individual. And frankly, without that level, without that dimension, what readers take away is that they're the problem, that they are responsible for solving their own challenges. And that's not true, right? The very first thing I tell a person who reaches out to me who is asking for help and figuring out their system is you are not the problem, the system is, right? So we're gonna guide you through a range of questions and ideas, but you're gonna realize that the problem is unaffordable, you're gonna run into a number of barriers and recognize it was designed or poorly designed to do exactly that.

SPEAKER_00 4:54

And you know, the this this is the first time that has been clearly articulated to me because you're right that it tends to be, oh, you did not plan for it, or or how come you didn't know that this was something you have to deal with, you know. But at the same time, my the previous guests I just interviewed talked about even capacity issues. You know, a lot of people think that, oh, mom and dad are gonna go um to a facility somewhere, and mom and dad may not want to go to a facility, but even if they don't want to go, um, there has to be uh um caregivers that around them, and then we have you know later I want to talk about the shortage of caregivers, but then you we also don't even know you know the fact that we have a shortage, uh a critical shortage of caregivers, you know. So then that can that's not an individual problem to solve, you know what I mean? So I I agree with you. So can you talk about a few of the systemic problems that you see, you know, maybe one or two that you feel are so under-reported on that we should be making so much noise about that just goes under the radar and are contributing to the larger issues that we we see right now?

SPEAKER_01 6:15

Yeah, absolutely. I mean, if I were to focus on two problems, the first one would be financing. It would be the fact that we live in a country where long-term care is either publicly financed for Medicaid, but only for low-income people, or it's really paid out of pocket by family caregivers, by individuals. Um, and it typically impoverishes middle-income people because it's expensive, right? Um, and we had an opportunity in the decades, decades ago when we were first designing Medicaid, to create a social insurance program for long-term care and make it affordable to families, design it in such a way that it would properly pay workers and so much more. And we didn't do that for a variety of reasons, right? Um, other countries, um, not a lot, but several countries do have long-term care social insurance programs. Washington State recently became the first and only state to develop that. But I would say that that's a barrier that deserves as much coverage as possible. All the ways in which financing makes it unaffordable for family caregivers, it impoverishes direct care jobs, it doesn't properly resource the employers or the businesses. And in essence, people go broke or forgo care altogether, right? They say, I'm not gonna get either long-term care or health care, right? And we know plenty of these stories. Um, the second problem is absolutely about the workforce. Um, so you know, the paid backbone of long-term care are direct care workers, about 5.4 million home care workers, nursing assistants, and residential care aides. Together, they are larger than any other occupation in this country, and they are one of the fastest growing occupations. Yet they make poverty-level wages. They are often relegated to part-time work, work irregular jobs, take multiple jobs just to make ends meet. Um, and they're not valued or respected as other healthcare professionals. One example is if you're a home care worker and you're trained and credentialed in one state, you're not able to take that credential and work in another state, even if it's like a short drive away. I live in Jersey City, New York City is like one train right away, right? The same worker would need to be trained and certified in both states, right? And that type of professionalized, licensing, portable infrastructure that exists for doctors and for nurses doesn't exist for direct care workers. And it it devalues their work. It makes the workforce less versatile when people need care. Um, and frankly, it's just a strong statement about who what what kind of care do we value as a country? We don't value the care that older adults and people with disabilities need um in the same way that we do other people. And I would say we don't necessarily value that as well. Like healthcare costs are incredibly expensive. But um, that's a major problem is the workforce shortage that you mentioned.

SPEAKER_00 9:17

Yeah, no, and and so you know, to segue into another group, um you began this work uh with Sage, uh building a national advocacy program for LGBT older adults, and in that group, society makes an assumption uh for LGBTQ older adults about availability of support and care in older age when in fact most of them do not have that. So, you know, what have you learned, or what did that work teach you um that has become true for everybody now that is reaching you know that age where they need care and support?

SPEAKER_01 10:02

Yeah, the the lessons are invaluable. I I began that work in 2010. I was there for about five years, and um it was the very first job that I took in the aging and long-term care system. So it introduced me to this field and I became enamored with it. Um, I was charged. Um, I was their the head of their policy program, their policy and advocacy and education program. And they were at a stage where Sage was going from a largely local organization with a few affiliates around the country to a national organization that wanted to change, you know, policy at the federal level, various states, et cetera. And so I was working then with the uh CEO, Michael Adams, who was a remarkable and visionary leader and a good friend. Um, and he said it helped me figure out what does it mean to put this issue on the map from a communications perspective and an advocacy perspective. I mean, what I learned and what is still relevant today, and it's not just relevant to LGBTQ people, it's relevant to everyone because the lessons are transferable. Right. I mean, one is that when you look at the challenges that LGBTQ older people faced and face still, um, there are challenges such as they were less likely to be married and more likely to be single and thus more at risk of isolation, right? Um I say this is a societal issue because actually the number of singletons, regardless of the sexual orientation, is growing, right? And eventually every married person becomes single when one person passes away, right? So there's lessons there, right? The second is that they were widely discriminated against and had grown up in the era of the th40s, the 50s, 60s, 70s, where homosexuality or you know, trans identity was considered a mental illness, where people were fired from their jobs. Um, they were blacklisted part of the McCarthy era, right? Right. Um and so they entered older age, not just financially less secure, um, but having emotionally inhaled what it means to have faced that discrimination your entire life, right? And it showed up in poor health outcomes, in um their distrust of providers, of institutions, um, and just and their poverty, high poverty rates, right, which were disproportionate. Again, specific to them, but not exclusive to them. Right, right. Because certainly a lot of communities have faced discrimination over the decades. Right. Um, and and what we found with LGBTQ older adults is that at a time in which they should feel like they can retire securely and feel safe in whatever space they entered, they weren't. And so they would walk into senior centers or nursing homes or assisted living, they would have home care workers visiting and they would experience the same bias and discrimination that their entire life. And again, other people face that as well. But it created a very different caregiving experience. Right. Um, it's one of the chapters that um one of the uh uh elements that I'm exploring in the caregiving divide through a book I'm writing now, and called Power, right? That who the kind of care that some people get versus others is really determined based on dimensions of power, in this case, sexual orientation and gender identity. Um but there's lots of lessons for people.

SPEAKER_00 13:24

Yeah, no, no, that's that's so you you you know, I I I I I I teach uh Johns Hopkins, I teach finance. Um and so I I I I come from this work also from an academic background. I'm also a marketing person. So when I saw that you have coined um a phrase, you know, caregiving divide, I got excited, I went and looked at it. And and so I want to I would since you mentioned it, I want to I want to go straight to that. So you you name something called caregiving divide, you describe it as running across six lines: ideas, systems, place, resources, power, narrative. So I want you to take one family, you know, a 64-year-old whose mother just had a stroke in a state she doesn't live in. Walk me through where that family hits the divide first.

SPEAKER_01 14:17

Um that's uh that's a a great example, and I think it's it will resonate with a lot of people. Actually, my mom experienced a stroke when I was uh a child. Um she lived with us, but um it's it's it's it's very common, right? Strokes, heart attacks, cardiovascular disease, etc. Um, so how it would fit across the six dimensions, just a few examples, right? The first dimension is ideas, and it's really about mindsets. The dominant mindset in this country tends to be around individualism and meritocracy, right? These ideas that you are responsible for your lot in life, and if you succeed or don't succeed, it's your fault, right? And so we celebrate those people who do, the people at 90 who climbs Mount Everest, right? And we castigate the others. And you see it in policy all the time. Um, in that example, the idea might be this belief that the family caregiver might have that you know it's their fault they moved away. If they don't, you know, truly coordinate all their resources from afar, which is very difficult, um, it's gonna be their fault and the guilt, the shame begins inhaling, right? Versus there are systems that should make long-distance caregiving that much more palatable, right? Yeah, um, the second one is place, right? I mean, if she lives in a different state than he does, the reality is the first thing he's gonna realize is that the resources that he has in his state are dramatically different than what she has in his in her state. Because of federalism and the fact that Medicaid is a federal state arrangement, yeah. Um long-term care services financing all that very state to state and dramatically. Yeah. And so he will need to become familiar if he wants resources for himself, what his state offers, and if she wants resources for her, what her state offers. And roughly speaking, half this country has states that are doing something in the right direction around long-term care, and half the country does not, right? And so hopefully she lives in the part that does. If she doesn't, it's gonna be just more difficult. Um, the third is resources, and this is the cost of care, right? So, you know, access to long-term care can cost anywhere from $60,000 for home care assistance, depending on the number of hours and the level of care, all the way to like $180,000 a year if you're in a nursing home in a semi-private room, right? Who has the resources to cover that, right? Research shows very few people do beyond two years, right? And that, and so what they end up doing is they end up, you know, spending their money, they end up not pursuing it if they don't have the money, and caregivers or friends, you know, step in, and in the worst cases, when that doesn't happen, the person dies prematurely or is institutionalized prematurely into a nursing home, right? If there is an available nursing home, right? Those are closing, right? Which is a whole new topic. Exactly, exactly. Power is is who got to decide this reality, right? Was it in one dimension, was it the people most affected? Was it the disabled person, the older adult, the family caregiver? Was it the people in those states, or was it, you know, elite policy thinkers and their government officials with their own agendas and ideologies, right? Was it uh women, was it people of color, was it LGBTQ people, poor and low-income people, etc.? Or was it people who have in many ways benefited from the and we know the story of how policy leadership has played out, right? And so, and so that we would see the results of that in that situation. Narrative is is this story being covered? Are we covering enough the story of long-distance family caregivers? What does it mean to experience a stroke? What are all the, and specifically, as I mentioned earlier, what are the systemic solutions? Not just like what does a long-distance family caregiver need? I've often talked to long-distance family caregivers, and the first thing they say is, I wish there had been paid, coordinated support because the moment was filled with so much grief. I didn't know who to turn to, right? Um, and you can hire, you know, private care navigators, though it's hard to figure out which ones are good or not, but it's not necessarily a public policy offering, right? Um, and then the final one is systems, right? And that's, you know, what are the various systems that you and I'm sorry, the person and the mother, I didn't mean this when this is yours, the person and the mother are dealing with um because they're gonna be fragmented, they're gonna be under-resourced. Right. You're gonna find the the person is gonna find that they enter one space and then they're pointed another, right? Right. And they realize, for example, at first, well, we should qualify for long-term care. Well, if you don't qualify, then the, you know, as a person, you have to go to, you know, another resource. Um, you may find that you become eligible and then you decide that you want a home care worker, and then you go to a home care agency, and the home care agency says we don't have any available slots, right? Or you find a home care agency that's a hundred miles away. Well, how are they gonna get there, right? Right. Um, and then the caregiver may realize, well, I need emotional support. And but how do you find a therapist that's affordable, that means that et cetera, et cetera. So all of that is about living in a broken, under-resourced system, and the caregiving divide is the divide that determines whether someone receives services and whether someone doesn't, and they all play a role.

SPEAKER_00 19:51

Yeah, no, no, you know, so you as you were talking, I was thinking when when your book comes out, I I want to come back and and have a conversation around this because I mean it is so heavy, a lot of these topics, and you know, I'm thinking, I just coincidentally, um, three weeks ago, my content has been around um social security, Medicare. I mean, I have a book, the Social Security Playbook. So I've been focused on that. Thank you. I've been focused on that, and then I realized that the the aging and caregiving space as I was doing this podcast, I I, you know, if you go back and look, most of the first guests I've had have been around caregiving. It wasn't by design, it's just that I just stumbled on this topic and I became interested in it, and I'm realizing that oh, this is a whole new system of problems that need to be explored. And so I started a YouTube channel, brand new channel called Aging and Caregiving. And I'm just educating myself and educating the public around these topics through content, and I'm just learning so much and realizing that this is a train wreck about to happen in terms of a lot of people, you know, and given the number of baby boomers that are retired. I mean, the oldest baby boomer is 80, the youngest is 62 now, and so you have this block of people who the system is not ready to really support, you know. So, um, with that said, I want to talk about the cost. You know, a non-medical caregiver at home now runs $35 an hour. And people come to realize that, and as you mentioned, you know, even if you're going to uh a home, um I mean the cost of this is you know a year or two and you run out of money, you know. So for a couple right now that is listening to this podcast that have saved $400,000 and are faced with this, maybe one of them needs to get a caregiver. What does the math really mean for them?

SPEAKER_01 22:01

It's a hard one. And one of the biggest challenges in creating the formula around how much you should save for long-term care is that you cannot predict the future. You cannot predict how expensive care will be over the years, what level of care they will need, or how long they will need it, right? If they only need it for two years because they pass away or they improve, that's one question. If they need it for 10, 15 years, that's a much different question. Right. You know, I I think I read an article recently where people were recommending that the new retirement figure was 1 million, right? Well, most people don't have that. Some don't some because they've been, you know, they've been in low-wage jobs their entire life, or they had a health crisis or some other emergency, you know, have zero savings and keep working until their late 70s, early 80s, and that's the fastest growing workforce segment, right? Um, so cost is a really big question for that couple that has $400,000 and realizes they need home care. I mean, part of what in any caring situation, you go through a series of questions. Um, one is you do a care assessment. What type of care, what level of care? Does this person, for example, need somebody to come in once a week to, you know, tidy their home, to, you know, take their temperature, go grocery shopping and just check in. That's gonna cost you typically a home care uh worker from an agency is gonna cost you $30. Now you can go off the market and hire someone directly, um, and it'll be less affordable, it'll be more affordable, but it's also more ripe for exploitation and you don't have the training necessarily, right? Um, so um you can also ask the state if they have a consumer direction program. You know, can my family member or friend, if you have one, get paid? A lot of people don't realize that there are consumer direction programs, right? But the first is assess the level of care. And the person who needs the care should be the decision maker there, right? Too often family members or others are deciding for the person. I don't want that at any age, right? Yeah, um, I want to be able to decide, recognizing they should have a say somewhat, right? Right. Um, you want that. Then you ask, um, you know, what would that cost? Um, and in my area, and you explore options. So if it's a home care worker, you would look at the agencies that are available. Um, you would look at um, you know, are there individuals in the family life that can be either a consumer-directed uh family caregiver or you know, um might be able to offer in kind of unpaid support, right? You would play that out. And and again, keep doing the math until you arrive at a figure that makes sense. Yeah. Like any payment thing, you realize what can I afford and what do they need, and you try to reach a compromise, right? Yeah, yeah. Um, given that they've had $400,000 in savings, um, I'm just assuming, but the family member would be different, that um they probably might not qualify for Medicaid. It depends on the person, right? Does the person qualify for Medicaid? Are they low income, etc.? If they are, then that's a great route. They can go through Medicaid. And if their state has a program that really supports home care, and many states are nursing home mandatory, but home care is optional, right? Um, then you can apply for public programming. If that person doesn't qualify for financial reasons, they can start to spend on the money, the family can pay as well, but eventually, depending on how long they need it, they may reach a point where they need government to pay, right? At that point, it usually means the person spends down their assets and income until they qualify. Um, and unless they have a strong home care program, they probably go into a nursing home, right? It's just not a path that that many people want. Most people prefer to age and live in their homes. But the challenge is that is that cost range between 60,000 to 180,000. And and the 400,000, by the way, the couple is not just for this, right? Exactly. Exactly. Ideally, they want to travel, they want to live their own lives, right? And so the tragedy of living in a country where you know you have to spend on your savings to be cared for or care for someone else and not live the life you feel like you should be thriving in in your retirement years, that's a tragedy.

SPEAKER_00 26:30

Yeah, no, and and it is it, you know, I don't want to I I don't want to make this like an emotional, but it when you hear these stories, like $400,000 is a lot of money to save, even though a lot of people may not consider it that way, because when you look at what you have to deal with to be able to get to that point, you know what I mean, and the number of people leaving paycheck to paycheck, people barely making it, and so you you you come and be like, hey, we've been able to save this amount, you know, and and then you realize that even that when you get into a situation, it then you begin to look at costs, and you could spend that in two years, depending on the situation you're in, and just on caregiving, yeah, depending on what you're dealing with, and so it is so easy for people to just spend down, and and so I want to talk about once you spend and you get into Medicaid, and people don't really understand that Medicaid also does not necessarily it it will it would take care of you in the at least provide some financial support and and get you somewhere, but the choices are becoming restricted, and also for somebody probably that has been able to save this amount of money, and probably you know, you would say middle middle um middle income, they realize all of a sudden that they are caught up in a situation where they cannot afford to go into a nursing facility that is probably of what they would want, and then the choices that Medicaid is providing, it's probably not exciting choices that they think like, oh, I don't, I this is not and then they're caught in the middle, but they can't afford anything.

SPEAKER_01 28:23

That's right, that's right. Yeah, absolutely. It's the forgotten middle, right? And so you you realize um how expensive long-term care is. This is the reason why so many family caregivers reduce their hours, even quit their jobs, because the math, it's it's more affordable for them to just offer the support personally than it is for them to work and pay for it, right? Right, um, and typically that that that falls on women, although men are becoming more and more family caregivers, right? Um, I also think, you know, it to me it relates also back to the narrative question, which is that there isn't there's two narratives here that are need to be stronger. One is how the the incredible cost of long-term care, and how most people don't realize that until they have to pay for it, right? That should be in every retirement savings, every financial counseling. That should be square one. And I can't tell you how many people I've spoken with, um, people who are 100% sure of their retirement approach, etc., um never have factored in that long-term care is actually gonna wipe out your savings, right? If you have it, and most people, right? Right. Right. And that's a bad, that's a sad narrative. And the other narrative is um this idea that um uh you know Medicare will save you, right? Medicare does not cover long-term care for the most part. I mean, very small. I mean, right. And so so when they say, wait, wait, Medicare barely sometimes doesn't even cover your prescriptions and and and limits that, right? Right. And so I think that's another piece of the narrative that that is missing.

SPEAKER_00 29:57

Yeah. Right. And and and I want to say that most people find this out as the worst possible time when something has happened to their parent or a loved one, and the family is gathering together and and trying to decide, and they assume that oh Medicaid will do something, and they realize that it's not, and then all of a sudden they they realize that there's no plan for long-term care, and that is that and and they're making an emotional decision and a difficult decision, probably the one of the most difficult decisions that we ever made as a kid's family in the worst possible time with limited information. So, what I want to say is that you know, I feel we we've talked about some of this, but I'm I want to address somebody who is facing this situation for the first time, you know, and they realize that their parents have no resources to deal with it, no plan to deal with it. Is there an organization or a place that they can go to begin to peel this onion?

SPEAKER_01 31:00

Yeah, absolutely. Um, yes, and it's probably multiple organizations and also online resources, right? I definitely think that there's information. Um, as I mentioned earlier, that unfortunately, unless you have the money to pay for a care navigator and screen them properly so that they have the right skills, you're it's gonna be a fair amount of work, right? Um, you know, there are area agencies on aging um covering every jurisdiction in this country, and they are often one-stop shops for people who are going to this experience. So they would go to a local area agency on aging, um, they would meet with somebody, the person would ask them a range of questions and then point them to a range of resources, right? They might say, you need um, you know, you need a lawyer, you know, the setup the documents, you need um to qualify for Medicaid, so talk to this person. You may, you know, these are the the residential options, these are the home care options, etc. And they're gonna they're they're they're they're they're basically they're sending people in different directions. So immediately they're gonna begin interacting with a wide range of organizations and people. Um, I think the fact that they have no resources puts them in a different category. And so that's gonna come into play right away. They will say, well, there there should be government support for this, and and there is government support, but you know, in theory, but whether you you qualify for it, receive it, et cetera, is a whole other part, right? Right. So, for example, I'll use my own personal story because this this this relates to this question. Um, my mother, um, when um she had a series of uh falls and health incidents, where it eventually became clear she couldn't live at home anymore, and it happened overnight. So that that realization, she was hospitalized, and the hot the medical team, her, my father, and my sister, who all lived together, said there's no way she can live safely at home. She needs 24 hour skilled care. Um, she didn't have resources, and so um the only option was a nursing home. Home care was not funded or available at the level it should have been, and this was in Colorado in 2012. Um, so you know, in that situation, um, if they need that level of 24-hour skilled care and they have no resources, the option is probably gonna be apply for Medicaid, which by the way is incredibly arduous and time consuming, lots of paperwork, um, and move into a nursing home, right? They probably, even if they don't have any resources, maybe a person can help with this, hire an attorney for guidance through that process. Um, and then of course, think about you know, non-paid supports. What can family members do? What can friends do, et cetera? I think the biggest grief point in that moment is the grief of transition, of realizing for the person who's might need to leave their home or is no longer as independent as they once was, none of us is really ever truly independent, right? Uh, but it but has lost their mobility, et cetera, right? Um, it's it's it's grief, right? And it's it's re-realizing that you you you had a before and now you have a new and an after, right? And the family does as well, right? And they have to accustom to that. So so there's gonna be a need for emotional support for all parties. Um, but so you know, and then there are online resources. You uh these days, especially with the advent of AI, there are certainly apps that caregivers and others can access to everything from tracking a family member who needs support to communicating across the family, right? That's a challenging one, especially if there's conflict or or anything like that. Um, there are ways to use wearables to detect someone's health. There are um, you know, online resources that help you plan for healthcare proxies, power of attorneys, wills, preparation. There are questions that you can that you can download from online when you're screening home care agencies or nursing homes. Here's what you should ask for, here's what you shouldn't. And so and essentially you assemble it yourself, um unless unless it goes you have the money to have someone do it for you. But in most cases, they don't do it themselves.

SPEAKER_00 35:18

Yeah, yeah, yeah. Um so you've been writing about you know caregivers and how they feel, you've been putting words to their their experience. Um, you you know, I read a piece about you know um hypervigilance, uh compassion fatigue, uh disenfranchised grief. Um why is it important to put words to this? And um what do you which one do you think goes and recognize the most?

SPEAKER_01 35:55

Yeah, it's um it's ooh, it's that's a the last one is a big one, right? Um, I would, you know, I I started this series as a social media conversation called The Hidden Vocabulary of Long-Term Care. Um, and it was my own experience, and also um, I lost my mother to during the COVID pandemic in a nursing home during the second wave in 2020. And my father died of a stomach obstruction, but he also had dementia, and he chose to go on his terms, right? Um, two very different deaths, both painful, but and both brought up something that went beyond the top-line definition of grief or anger or sadness, right? Those words as a writer and as a thinker um are so limiting to helping me and others understand the complexity of what it means to navigate caregiving, whether you're the one receiving care or the one providing it. So I started looking up terms that I felt just gave people um a different way about thinking about their situation. And it's not just about care. Those, those, those hypervigilance can be useful across all life, right? Um, and and they just really um they help me understand my life. And when I talk to people um who often sought me for advice, it helped them understand, okay, it's not just grief, it's something else, right? They would say, for example, and this might answer your last question, which is the most profound one, anticipatory grief, right? People would say, Well, they're not gonna yeah, you know, cherish them, love them, you know, why are you feeling so sad? Enjoy your moments. And they would wake up crying every morning, etc. That's anticipatory grief, right? That's the reality that you know you're you're realizing what a world without them is gonna feel like. Um, and that grief is as valid as the grief that happens once they pass away, right? It'll be different, but it's as valid. Um, so I I think for me that that's that's a really important one. Um, and I hyper you mentioned hypervigilance. I think that's an important one as well. When you're aware, for example, I have a friend who's going through this, that your loved one might at any point fall or get sick, or you know, something might happen catastrophic because they've already become, you know, uh uh less mobile, etc. You develop this hypervigilance of just always thinking and watching and anticipating, right? That's exhausting. Um, it's it's it's a form of anxiety, really. But it's it's tied in caregiving to the fact that you don't want your loved one to get hurt or worse. Yeah. Um, and so hypervigilance, I think, helps people unpack that. Right. Uh, and hopefully they get the emotional support that they need, or at least at least have the vocabulary to name it.

SPEAKER_00 38:44

Yeah, yeah, no, and and um I I like the fact that you talk about emotional support in this context because a lot of people go through their thrusted into this situation and are doing the best that they can. They're dealing with all sorts of things and coordinating all these, and there is a toll, you know, there's a physical toll, emotional toll, and and the the the you know, and they they feel guilty that why you know they feel guilty of trying to get support, you know, because they are providing support, you know, and so I feel like that putting that at the forefront of the fact that you know you also need if you're a caregiver, you also need that emotional support because there's so much, you know. And if you're even going through it and you're not the direct caregiver, you're also going through emotional things that it's worth getting support for. So um, I want to shift to um AI. I was talking to somebody recently, and they said that we only have capacity for when it comes to like facilities, we were of various kinds, we only have 10, you know, 10% capacity in the country. That's why you know, nursing home and and all these assisted living facilities are getting so expensive because the demand is tremendous, the supply is not there, and even if we build as fast as we can, we we we we're not gonna catch so a lot of people have to age in place, uh whether by choice or not, you know. Um and then there is the shortage of caregivers. Uh, I read something um I think you put up uh you know five years ago there were like you know estimated 9.7 million openings, um, and now it's getting so there is a shortage of caregivers, we all acknowledge that. So then what do you see? And then I I know I read something that you have you have opinions about the role of AI and how you think it's going to play. So can you talk to that? How do you think AI is going to support care? And when I mean AI all the way through robotics, yeah, yeah, exactly.

SPEAKER_01 40:53

Um, you know, AI has been around for decades. It was first um developed and introduced in the 1940s, 1950s. Um, it began. There were there were a number of countries, of course, racing to figure out how to use artificial intelligence in different ways. Um, and in the 80s, 90s, 2000s, et cetera, it started to take off, right? The Roomba vacuum in the 2000s was a great example of a device that people realized was the power of artificial intelligence, right? But it's used in our smartphones, it's used everywhere, it's ubiquitous, right? Um, it just keeps evolving. And certainly the emergence of large language models of places like Chat GPT, OpenAI, which oversees it, right, um, are um fast-tracked all of it. And all of a sudden it became something that is just huge. So the last few years have been critical. Um, it's interesting, healthcare has already begun adopting it. Um, you can see it um when you uh when you receive automatic updates about your prescriptions, you can see it when doctors are having their notes transcribed, um, when they're uh when you sign into something and it anticipates everything in it. There's quite a range of tools that healthcare has adopted in other industries. Um, home care, for if we're talking about aging in place, right, um, has not been as far ahead as the other fields. So I spent about a year studying this um as part of a project with the National Council on Aging and the Administration for Community Living at the federal level. Um I was studying capacity first and how AI could support that, right? And there's two main ways that we studied it. One is how can it support workers who have limited capacity, right? Um, to free them to do the work that really requires human touch and less of the paperwork or other stuff, right? And how can we free agencies, you know, to also focus on delivering optimal care and less on compliance or you know, regulatory issues and stuff like that, right? Um, and so I found examples of AI-based technologies and tools that have been developed over the last few years that addressed all of that. And so what the report did is it looked at the 20 most common responsibilities of home care workers and the 20 most common responsibilities of operators. And it said, um, here's an example for each of those about how AI can help. And here are the concerns because AI, of course, comes with privacy concerns, surveillance. Um, if you want to go environmental or existential, it poses that as well, democracy, et cetera. But we said for the sake of this conversation, let's focus on those. And so, you know, it's it's evolving. Where I think it has potential is that is exactly that is in making sure that care can become more human and allow more human centered, right? Person centered, and allow both workers and operators to really ensure that people get the best care possible, right? A client who has had, you know, a home care worker for six months to a year, but only gets 30 minutes, 15 minutes of their time, because the other 15 minutes are, you know, making sure they're documenting information, driving, finding maps, like all that stuff, right? That's not a good use of their time. And if AI can facilitate that, as these new tools are doing, so that the worker can spend more time on the human touch aspect, that's a win. The same with operators, right? Businesses should be as effective as possible. And hopefully AI can do that. One of the challenges with AI, and I'll end with this, is that a lot of these tools are only being tested by the innovators, the firms, the technology companies. And so it's, and they report, of course, the successful results. I'm assuming in good diligence, they are also paying attention to the problems and fixing their technology. But that's not aware for most of the public. And most of the research I found there was very rare, it was very rare to see third-party independent evaluation of these technology tools. So it's kind of tough to say, are they safe? What's happening with my data? Right? What what where might the accidents been? AI makes mistakes all the time. But a mistake in care can be cut can be can can be obviously be deeply harmful. And so and that's where policy makes sense. I think we need to not just incentivize and fund the proliferation of AI, we need to evaluate it in an independent way. We need to publish the results, and we need to make sure that bad actors are weeded out and the best technologies that truly do work are supported and scaled. Right, right.

SPEAKER_00 45:37

No, definitely. Um, I know we've caught a far a range of topics. Is there anything that you wanted to talk to this audience? You know, mostly people who are nearing retirement or are currently retired, and are exploring some of these questions that we talked about today. Is there anything particular that we didn't talk about that you wanted to uh bring up?

SPEAKER_01 45:59

Yeah, I mean, I would say um in a in a show of solidarity and emotional support, I would say it's there's no script to caregiving and long-term care, both because the system itself is so fragmented, because but also because everybody's experience is is different. So what you're doing is you're writing your own script based on narratives and storylines and resources and best practices that exist out there. You're a writer of your own long-term care journey to get back to the writing theme, right? Um, it is required, like any good writing, a fair amount of due diligence. Um, and it makes but but you make the best choices you can. You make good informed choices based on your resources and your needs, and you pivot as needed. Um, storylines take detours and you may need to take a detour. But when you've run into a barrier or a wall, recognize the problem is not you, it's the system, it's not you.

SPEAKER_00 46:56

Yeah, that's beautifully said. Your current work is in um is the company is called CareWorks. Can you give us a little bit about what you guys do? And and and if people want to, you know, people who are listening um want to learn more about your services, how can they follow your work?

SPEAKER_01 47:14

Yeah, absolutely. So I launched the CareWorks project in April at the American Society on Aging Conference. Uh, and it's a basically a consulting, it's an advisory and innovation firm focused on long-term care. So we support nonprofits, foundations, government leaders, businesses, investors who are interested in improving the system, in reimagining long-term care. Maybe they need help with designing a program or initiative. Maybe they need help with communications and narrative work. Maybe they need strategic advice, um, research, analysis. Um, it's all listed on our website at careworksproject.co. And certainly they should reach out and we can have a conversation and explore to see if it's a fit. If you're an everyday person who's not an institution, we also have a narrative engine. Um, I have a Substack called Care Actually. You can follow us on Substack. You can follow us on Facebook, LinkedIn, and Instagram, where we post on the hidden vocabulary of long-term care, top news stories, and you can subscribe to the CareWorks dispatch on our website, which is a quarterly intelligence briefing on long-term care that deeply covers one topic every quarter. So we recently focused on AI itself. So definitely join our community, support us or hire us if you're interested in really reimagining care together.

SPEAKER_00 48:38

Absolutely. And all those resources will be posted in the show notes of this podcast so uh listeners can follow you. No, uh, this has been a great conversation, Robert. And I know that you know, every you know, there's so much. I only went through half of my questions. And so hopefully, once your book comes out, we'll we'll bring you back and then we'll continue this conversation. But it's been a pleasure talking to you.

SPEAKER_01 48:59

Likewise, um, thank you so much for all the work that you do and in helping bring this conversation to the masses. Thank you.

SPEAKER_00 49:06

And to our listeners, thank you for spending part of your day with me today. Part of the selfish reason why I host this podcast is to expand my own knowledge in some of these areas. There is so much change happening in the world of aging and caregiving in the retirement space in general, and bringing on top experts like Robert is how we all learn and expand our knowledge and see the role we can play in helping push these problems to solutions that work for everybody. So, if you like what you heard today, consider subscribing to the retirement navigator podcast. You can also listen to us on YouTube. The full video is posted there. Now, if you are retired or have entered your next chapter, I have something special for you. We have a show called The Morning Step. It is a morning show, it is three minutes long, tops, and it's supposed to give you daily inspiration, encouragement, and wisdom to get your day started. You can listen to it wherever you listen to your podcast, or you can watch episodes on YouTube. We are about episode 30 right now as I record this video, and so you can join us. Now, I also want to encourage you to follow us on all the social media channels. Links are in the show notes and share this podcast with anyone you think will benefit from the today's conversation. Until the next time, take care and remember retirement is not the end of the road, it is a new season to navigate with clarity and confidence.