SPEAKER_00 0:00

Welcome to Retirement Navigator, the podcast for adults 55 and above who are ready to make their next chapter their best one. I am your host Kwame Kwade, co-founder of Next Chapter Media and Ajahn Professor of Finance at Johns Hopkins University Kerry Business School. Caregiving is something almost every family will face at some point, and yet most of us are completely unprepared for it when it arrives. Today we are talking about what caregiving really costs families, the money, the time, and career years, and why that matters to all of us as we live longer. Joining us today is Rita Chola, Senior Director of Caregiving at the ARP Public Policy Institute and one of the country's leading experts on family caregiving. In March, she and her colleagues published a report called Valuing the Invaluable, which finally put a number on something America has never really counted. They found that 59 million family caregivers provided 49.5 billion hours of care in a single year, worth 1.01 trillion dollars. That is more than the country spent on Medicaid that same year. Rita also brings personal experience to this work. She cared for her own mother for more than a decade. Rita, welcome to the Retirement Navigator Podcast. It's so great to be with Iquame. Thanks for having me. So I want to start off with the fact that you earned in 2016, you earned a master's degree in management of aging sciences from the Ericsson School of Aging at the University of Maryland, Baltimore County. And at the same time, you were caring for your mother the entire time you were a part of that program. So what did being a caregiver yourself teach you that the research alone would never have shown you?

SPEAKER_01 2:25

That's a great question. And you know, that time in my life, as I look back, that was a time of tremendous stress, but tremendous opportunity. So I had been caring for my mom for several years prior to that. And actually, I had two children. I was married and had two children that were born into that. So at that given moment, I was working full-time, I was caring for my mom who was living with frontal temporal dementia. Um, I was in school part-time, and I had a two-year-old and a four-year-old. And when I look back, I'm like, what was I thinking on that one? But it what it showed me, um, and really at the time when you looked at caregiving research, it presented um the idea of a caregiver as um a woman um caring uh for you know an older mother was like the average. And I realized that caregiving in that moment was far beyond the average. And I realized the importance of ensuring that research, policy, and practice was really more reflective of what everyday individuals like myself were experiencing. Um we call it sandwich generation caregiving. In the current day, we're talking about sandwich generation as really being millennial and Gen Z. Well, I'm a proud Gen Xer. And when I was in that life stage, I was a sandwich caregiver. I cared for my mom for 15 years, and eight of those were with children, two children, and trying to manage all of that. So I think that is what really even fueled my desire to continue working in this space, is to ensure that you know we weren't focused just on the average, that we were focused on the reality of the broad range of people providing care and the different types of supports they needed.

SPEAKER_00 4:37

So, can we speak a little bit about that? I like the fact that you talk about the broad range of people providing care. Can you give us examples of what that looks like?

SPEAKER_01 4:47

Absolutely. I mean, you have again, I showed you or you know, spoke about what that average caregiver is. And of course, there are majority of individuals in this country providing care are women. There's no doubt about that. 60%. Um, and within that group of women, you have individuals who are single, you have individuals who are partnered, who are married, um, you have individuals across the lifespan. Um, when we think about caregiving, we don't often think about younger children or um those in college, um, 18 plus. Um, we don't necessarily always factor in millennials or individuals that are in early to mid-career. Um, and then we have a range of cultures. You know, we live in a culture of care, right? So everybody is providing care, whether they're calling themselves a caregiver or not. And those that we really rein in on or focus in on providing care duties come from different backgrounds, um, race, ethnicity, um, you know, uh socioeconomic, and all of those things impact and influence the type of care that we're able to provide.

SPEAKER_00 6:09

Absolutely. And I want to segue into you know the report that you are a co-author of the um the valuing the invaluables, and and I think the recent version came out in 2026, and it it put out some very shocking numbers that for me at least it was in terms of the number of people providing care and most importantly the cost of that care, that free care. Um can you elaborate a little bit on that and what what that means for my audience in terms of the fact that we underestimate the amount of free care that is being provided and the impact that it has on the people providing the care?

SPEAKER_01 6:54

Absolutely. You know, again, I think when we oftentimes when we think about caregiving and when we have that discussion, we're very focused in on an individual caring for their mother or an individual caring for a family member or close friend. So of course, when that individual, when that person needs support and needs help, of course we're gonna do that, right? I think what these numbers show, and I agree with you, they're shocking numbers that are sometimes hard for it, the everyday person to really break down, like, what is that? How do I even fit into that?

SPEAKER_03 7:30

Right.

SPEAKER_01 7:30

But you know, our reports showed that family caregivers contributed more than one trillion dollars in unpaid care.

SPEAKER_00 7:38

Wow.

SPEAKER_01 7:39

And I think what really hits home with that number, and what I try to say to individuals, is that if you ever felt alone, when you look at that number, I hope you realize and understand this massive amount of individuals. 59 million adults make up that number, right? So you're not alone in doing this. And when we talk to policymakers and others, employers, recognizing the amount of care that individuals are providing. That the 59 million in that group, they're providing 49 and a half billion hours of care. Think about that. 49 and a half billion hours of care that ranges taking someone to a doctor's appointment or to see their nurse practitioner to giving a family member injections. And many of those individuals are also taking care of raising their children at the same time.

SPEAKER_02 8:44

Yeah.

SPEAKER_01 8:44

And so one of the things that I think that number shows is that it's not just about, it's not just evidence of a family member or friend's dedication. I think from a systemic view, it's really showing system dependence on family caregivers. Yeah, family caregivers were to go away tomorrow, the system would collapse.

SPEAKER_00 9:09

Absolutely, absolutely. And, you know, when you guys published the version of the report a few years before, you know, you put that number, I think, at $600 billion. And then over a short period of time, it rose to, you know, $1.1 trillion. Yes. In a very short period of time. What do you think led to that big increase over such a short period of time?

SPEAKER_01 9:36

So there are a few things we attribute to this to. I mean, of course, the population continues to age at a rapid pace. We we we know that discussion. I think we also know and see that more individuals are seeing themselves as family caregivers. They're seeing, even if they don't call themselves that, they see that they're providing an inordinate amount of care than typically happens, right? And then the third thing is a reality or recognition in the research that caregivers are doing more. So when we developed the number that that 600 billion figure is focused on, it was focused on home health, the hourly wages of home health uh aids and what home care aids and home health aids. And what we see now for this new report is we took into account the complexity of care that so many family caregivers are doing. And so when we look at an individual giving injections and managing really challenging medication regimens, um, that are uh managing incontinence, um, that are doing pick lines, right? All of those really intense things that you would have to pay a registered nurse to come in and do, we factored in that cost. And so what you see in this trillion dollar number is a reflection of the vast complexity of care that family caregivers today provide.

SPEAKER_00 11:10

Yeah, no, no, that makes tremendous sense. And, you know, I want to shine a little bit of light on those people who are providing the care and and what they give up. You know, I think that your report values, you know, I don't know if I'm quoting this correctly. So correct uh, you know, you know, $20.40. Uh, I don't know if that was the average um that night nationally is being paid, but we even know that that varies across the country. And, you know, people who are giving care are also spending some years out of the workforce, you know, social security credits that they never earned, retirement contributions that probably stop, promotions that they probably have to turn down in order to continue to provide care. So, what is caregiving actually costing the people providing care and their own retirement? And you know, what should somebody do before they really take this on? Or is this something they because a lot of people go into this unprepared because something happens and then probably the closest sibling to the family member is the one that assumes the care. So, what is it costing them and what if they can prepare, what can they do to prepare?

SPEAKER_01 12:37

That is a loaded question.

SPEAKER_00 12:39

I know, I know, I know. You can parse it, you can parse it in several parts. We can come to we can start with what do you think is costing individuals that are providing the care?

SPEAKER_01 12:49

Yeah, so we we do need to have another show on this because I know we I would love to.

SPEAKER_00 12:55

I would love to.

SPEAKER_01 12:56

AARP is coming out with a report uh in the next several weeks that really looks at what you're talking about, the opportunity cost of care, right? Okay, good. A lot of times when we think about the cost of care, we think about the out of pocket. So right now we are looking at over $70,200 out of pocket a year. Um, but you're right, we don't always factor in, and I think this would help with decision making. What is that gonna cost me if I have to step out of the workforce? Or if I'm a younger caregiver at you know, the early stage or mid-stage of my career, I can't go to that next career level because I can't travel all the time. I can't make those, I can't stay in the office until six or seven o'clock to do some of that work, right? And so there is absolutely an opportunity cost to that that needs to be factored in. To your point about what individuals need to think about. Too often we wait until there's a crisis. You know, one thing that we are sure of is that we get older every day, right? But we don't always want to think about what that means. And unfortunately, it is because there's a negative connotation to aging. But the reality is that you're gonna age. Um, and even if a crisis happens that's not even connected to your age, you still need to think about what is my plan if something happens to my spouse? What is my plan if something happens to a parent? Have we had that conversation as a family member? So that is there an expectation you said earlier that you know, whoever's closest to the parents. Well, that closest person may not be the best person to handle the finances, to handle the healthcare decisions, right? And so, as family members, we need to have earlier conversations from a uh medical standpoint. What are my choices? What do you want as you age? And as I, as this designated caregiver, am I actually able to provide that, right? And so I really think it's important um to have those early conversations. If you have not had those and you are now in a crisis situation, it can cost you a tremendous amount more in terms of your own emotional ability and capacity um and well-being as well as financially.

SPEAKER_00 15:38

Right, right, right. And um, you know, I feel like another area is also sibling dynamics when this happens, you know, because if you have multiple siblings and you know, only one person is in state or close by to the parent, and then they are assumed or expected to, you know, do something, and then you're right about financial decisions that they have to make, and they're probably making the best decisions that they can, and then the other siblings are probably second-guessing, you know, so then it creates a whole dynamic. So you're right, the early conversation is so critical. So for someone that is listening that isn't a caregiver yet, but they see it coming, like a parent who is slowing down, a spouse who isn't, you know, is is is showing certain signs that they are not sure about. I want to get into the hard conversation of you know, because people avoid it because it's a hard conversation, you know. Um, are there intermediate steps that you know, if you have to talk to a parent or a spouse about, hey, you know, you keep forgetting the same things about routine things that you used to do very well. How do people approach that conversation? Because we we avoid it and then there's a hospital visit, and then there's a crisis, and then now we have to deal with it, and we haven't prepared anything, and now we're scrambling. You know, where can they go to find resources to do this?

SPEAKER_01 17:13

You know, that is a key question, and I am so proud of the resources that ARP has developed throughout the years, and we hone in on them, tweak them, um, update them. Um, we have a number of resources that help those caregivers or to be caregivers to have those conversations, right? I was listening to one of the ways you proposed having it. That is not the way to start the conversation about reminding somebody they're forgetting something. That's the way to put them on the defense. But you know what? That was what you know, and you go with what you know, and so we have wonderful resources that walk individuals step by step. How do you have these conversations, even before you may see a sign in someone? Yeah, um, so individuals can go to aarp.org forward slash caregiving. And what you'll find there are uh planning guides. Um, we talked about finances earlier. It's one of our most popular guides, it's a financial guide to even help you think about. I don't even begin to know how much this is gonna cost me, right? And so it helps you have the conversation around what to with your family member or friend, what resources do you have? What are maybe state or federal resources that we might have to turn to? What does your insurance look like? And finally, what will I, as the caregiver, potentially have to put out there? Because what we don't want to get into is what we see in our research with the National Alliance for Caregiving, that so many family caregivers are faced with financial strain. Because of what they're having to pay and contribute to someone's care, they're not um contributing to their retirement savings. Uh, they are not um paying bills on time. Uh, they may be putting additional things on their credit cards and maxing things out. And so, even after that care situation is over, they're gonna be paying and facing the repercussions from that. So, this idea of a conversation and thinking through and using tools, such as you can find on ARP's website is very key to this conversation.

SPEAKER_00 19:37

Absolutely. And and and for those listening, I want to say again the website is arp.org forward slash caregiving, and you will find tremendous. I've visited the website myself, tremendous resources there that can help you um begin the conversations, begin to prepare. Um, and there's so many um angles to this, and I want to go to you know, paying for care, um, and the enormous responsibility to have to navigate um the healthcare system that a lot of people are not prepared for. And so to the extent that you can shed some light on, you know, number one, the person providing the care. I know in some states you can get paid, you know, to provide the care. You know, if your state has as those specific programs, and I believe it's through Medicaid, um, if I'm correct. So that and then also just then, you know, handling the financial responsibility on the insurance side of things, you know, a lot of people don't know that Medicare does not pay for any of this except skilled um care after after a hospital visit or something. So there is this shock when people find out, especially the sandwich generation, they think that their parents have Medicare. So it's gonna take care of everything, and then a crisis happens, and then they're navigating home health care, and they're like, oh, Medicare doesn't pay for any of this. Where's the money gonna come from? And if you don't have long-term care insurance and your resources doesn't meet the Medicare limit, then you have this situation that the family has to figure out what have you learned through that process that people can benefit from.

SPEAKER_01 21:31

Um, it can be a very daunting process. I I will not, you know, it's the truth, right? You have to write, and this is why the earlier you can have these conversations, the more the more important. And what I will also say is that again, ARP has a number of resources around this. Um, you know, Medicaid can pay for long term care, not Medicare, Medicaid can. Pay for long-term care. And Medicaid may be called something different depending on what state you're in, as well. Right. So it is important to understand your area, your state as well. What I will say to that is in addition to AARP, there are a number of resources and something called your local area agency on aging. And so you can call and get guidance. If you have questions around Medicare, you can call what are called SHIP SHIP counselors that can give you some insights there. But to your point, it's the navigating all of that. And you're right, people don't know the language and don't even know what they don't know. Oftentimes, because of that, leave money on the table. The other thing I will say, and this is critical as we talk about, and this is something important to ARP, allowing individuals to age with dignity. If you don't know what someone wants, if that information hasn't been shared, you may be making decisions based on what you want. I'll give you an example. So I answered, you know, this is me. I'm like, oh yeah, she wants to be resuscitated. She doesn't want a DNR. And my mom looked at me and was like, are we talking about me or are we talking about you? And she was like, I don't want, I do want a DNR. And I was like, wait a minute. In that moment, I would have made a decision that did not respect the wishes of my mother. Because we didn't have that conversation.

SPEAKER_00 24:02

Just assuming, right? Right. I want to just go back to making sure that our audience knows there's the area agency on aging. I think every almost every county has one, or at least in your local area, and they are a tremendous resource. They have staffed people that can connect you to resources in your local area. And then we have the ship, which is the state um health um insurance assistance program. I think I'm I'm I'm mispronouncing the acronym, but it is a federal funded uh program that every state has is SHIP, um, and also another tremendous resource when you're navigating, especially Medicare, Medicaid resources, they can tell you how things work in your local area. So I want to um wrap up with talking about diagnosis. And I know that you have stated publicly um how you know you went through a process where for a long time your mom's own dementia diagnosis took a long time to actually have a doctor actually figure out what was going on, and that probably cost a lot, you know, in terms of like you know, the frustrations of going through that. Um what what did that process teach you um and what can people listening to take from that experience of the importance of having a proper diagnosis because dementia I have learned is such a broad word that people can think it's one thing and it's a broad category for many things, and sometimes you have to advocate for yourself and advocate for your loved one to go beyond just we don't know what's happening.

SPEAKER_01 25:47

No, I really I this is a great question in the sense that too many people, particularly when we excuse me, talk about dementia, it's an umbrella term. There are many, many types of dementia that fall under that, and they can look very different. My mom was misdiagnosed with Alzheimer's. Um, and I knew from working in the field that it just didn't seem right. But, you know, it's a neurologist. I'm not a neurologist. We're gonna go with what you say. But over the time, you know, over, you know, several months, I said this just doesn't seem right. And I'll tell you the danger is that because the individual diagnosed her with Alzheimer's, he gave her a medication that in fact um were it does not support and can have adverse effects on an individual with FTD. And so we lost some time there just based on that. And this is why it's so important. And I spend a good amount of my days working with healthcare providers, her healthcare professionals to say no and talk to the family member. I'm with my mother at that time almost all day. I'm the one that is up with her at two and three o'clock in the morning. Listen to what I'm saying. I am the one that knows when she might have some hallucinations. I am the one that, you know, is mending and tending to her care. And so in this 15 minutes that you're with her, you cannot properly assess her without having that conversation. Um and that diet misdiagnosis cost us three years. It took me three years, many nights um uh on Google, on the computer, should I say, on the internet, um, you know, at three o'clock in the morning, trying to figure it out. Um when I did bring it up, it we often see this with healthcare providers. I was told, who's the neurologist? Am I the neurologist or are you the neurologist? Right, and so we have to find a better way for healthcare professionals to better support and communicate with caregivers and trust them as an integral part of the care delivery team. It's the only way, right?

SPEAKER_00 28:21

No, and and and you I I like the word phrase care delivery team because it is, because you know, those three years, you are the one, and I think I want people to imagine what we're talking about and and the seriousness of it because you are the one dealing with it on a daily basis, you know, and then you're hitting up this brick wall that is telling you, you know, this is not what's happening, and then you have to go live with the person and and navigate around that. So I I agree that you know, if it doesn't feel right, you know, and you're documenting these things and they're not listening to you, you need to continue to push, you know, because otherwise you are the ones still that have to, you know, ultimately go home with your loved one and have to navigate that situation. So that brings me to, you know, you know, you you did care for your mom, you did care for your grandmother, and I am sure that you know, when I've interviewed people who have provided a lot of caregiving, there's also some guilt that comes with it about taking time for themselves, doing things that they want to do for their lives. If somebody is listening right now and is going through that in the middle of it, and you know, feeling exhausted, what would you tell them about that guilt that they're feeling?

SPEAKER_01 29:39

Do not feel guilty. I understand that feeling of guilt so much. Uh, this month will be six years since my mother passed away. And to this day, those feelings, did I do enough? Did I meet her where she needed me? Um, did I understand? Did I love her? Did I all of those questions, right? Did I ask the right questions? Um it's really hard not to feel that. Um, and you hit a note because so many caregivers, we talk about the tasks that they're doing, but we hear from caregivers, almost 20% of caregivers talk about the emotional impact on themselves, on their mental health that go along with this role. They talk about the physical impacts that go along with this role. But what I will say is that finding time for yourself, while it may be challenging and difficult, and admittedly, I was not the best person doing this, but you have to do it. Um, and oftentimes we hear people say, you have to do it so you can be there for the person you're caring for. I'm going to say yes, and you have to do it for yourself. Don't want to see caregivers get sick or go down or not be able to have the life that they want to lead because they sacrifice themselves in such a way that it told it impacts them. And so, whatever that care for self looks like, for me, it often looked like sitting in the car for 15 minutes before coming in the house, listening to music, an audio book, looking at the sunset, whatever that was that brought me a moment of peace before I knew I had to go in and deal with whatever was going to face me. So, whatever that means for you, can you get 15 minutes of sleep, more of sleep a night? Um, can you have a neighbor or a friend come over and help with the children or with your parent or whomever you're caring for? Whatever it is that you need for yourself, being able to identify that, asking for help, and really trying not to feel guilty.

SPEAKER_00 32:05

No, no, that that's that's great advice. And and Rita, I know there's so much more we can talk about. I actually would like to bring you back once your new report comes in, uh, to talk about the opportunity cost of caregiving. I also want to talk about what employers can do to support caregivers in their uh place of employment. So there's so much more, but I feel like this is part one of a conversation we can continue to have. So I really, really appreciate your insight on this. The work that you're doing is is tremendous work in educating us about just you know the fact that this is a national problem that continues to grow and we need to pay attention to it. So I really appreciate you coming on the Retirement Navigator Podcast. Thank you so much for having me. Thank you. And to our listeners, thank you for spending part of your day with us. If today's conversation was helpful to you, be sure to subscribe to the Retirement Navigator podcast so that you don't miss future episodes. You can also find more retirement guidance and resources through our website at benefitsinsider.co. And if you are looking for connection and support while you navigate retirement benefits, I invite you to join our community on the school platform, it is the Benefit Insider Circle. And if you are retired or have entered the next phase of your life, the morning step may be for you. It is our daily show with about three minutes of inspiration, encouragement, and wisdom every single morning. Also, follow us on all social media platforms so that you can keep up with what we are putting out in terms of resources that can help you make the next chapter your best one. So, until the next time, take care and remember retirement is not the end, it is actually the beginning of a new chapter that you can navigate with clarity and confidence. Thank you for listening.