Is Family Caregiving Costing More Than You Think?

In this episode, we welcome back Rita Shula, Senior Director of Caregiving at the AARP Public Policy Institute, for an insightful discussion about the staggering economic and social impact of family caregiving in America. Rita shares the latest findings from the AARP’s "Valuing the Invaluable" report, revealing that family caregivers in the U.S. provided 50 billion hours of unpaid care in 2024—equivalent to $1.01 trillion in economic value, surpassing even national healthcare and Medicaid spending.

The conversation covers growing trends in caregiving, from the shifting demographics—including younger and sandwich-generation caregivers—to the expanding responsibilities shouldered by families as loved ones live longer and home-based care becomes the norm. Rita outlines key advocacy efforts for tax credits, financial relief, and workplace policies that would better support caregivers’ unique challenges.

This episode is a must-listen for anyone providing care, considering taking on a caregiving role, or seeking ways to support this essential, often invisible workforce.

Visit: https://aarp.org/caregiving

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Transcript

Darleen Mahoney [00:00:01 - 00:00:37]

Today we are joined once again by the fabulous Rita Chola. She is the Senior Director of Caregiving at the AARP Public Policy Institute. In her role, she drives the development of family caregiving initiatives by providing content expertise both within AARP and in partnership with a range of external collaborators. Her work bridges policy and research to practice centered on identifying and supporting needs of family caregivers. And we appreciate that you are there in the corner for these family caregivers. So thank you for joining us today.

Rita Shula [00:00:38 - 00:00:39]

So glad to be here with you again.

Darleen Mahoney [00:00:40 - 00:01:16]

Yeah, absolutely. I know that we recently, earlier this year, chatted about the AARP Caregiving Report and just the instrumental growth of. And I think it was the last five years, if I recall correctly. And we're gonna talk a little bit about today, the cost of that or the lack of. So I'm gonna let you kind of dig into that as far as the value of the invaluable, as you would say.

Rita Shula [00:01:16 - 00:02:17]

Absolutely. And I think the name of that report, which is where we've done multiple iterations of this report and tie it closely to the caregiving in the US Report that we do in partnership with the national alliance for Caregiving. And what we've noticed and what our data show for valuing the invaluable. AARP's report this year is that family caregivers in the United States provided 50 billion hours of care in 2024. And that care is worth an estimated economic value of $1.01 trillion. So just over a trillion dollars. And when we think about that, that's unpaid care that they're providing. And it's just a huge number that is almost unfathomable for individuals to really take into account what that means.

Darleen Mahoney [00:02:17 - 00:02:22]

Yeah, Yeah. I mean, we're not talking millions. We're not talking billions. We're talking trillion now.

Rita Shula [00:02:23 - 00:03:31]

Absolutely. And, you know, I think that, you know, as your viewers, your listeners hear that number, they may say, what? What does that even look like? What does that mean to me? And what does that mean for what I'm doing? And I think so often we hear family caregivers talk about feeling alone or they're there by themselves in this. I think it's really important. And these numbers show just the immense amount of value that millions of family caregivers are bringing to this country. When we think about what that number is in comparison to other things, one example would be that that number is larger than all health care spending by private businesses in 2024. It's larger than federal, state, and local Medicaid spending in 2024. And I think one of the numbers that gets me, because we oftentimes talk about out of pocket costs, and we know how expensive out of pocket costs are for health care spending, that this number is even larger than that.

Darleen Mahoney [00:03:32 - 00:03:43]

Yeah. Oh, my goodness, it's incredible. And part of that is because more and more folks are taking care of their loved ones in their own homes.

Rita Shula [00:03:44 - 00:05:02]

Exactly. And, you know, it's that more and more individuals are doing it. But one thing that we looked at in this particular version of valuing the invaluable is what caregivers are doing. And so in the past, we really equivocated that hourly value that to what a home health aide would be doing if you brought one into the home. And so some of the various tasks associated with that. This year, we also recognize that caregivers are really increasingly doing complex care. So they're doing things that registered nurses would be called in to do. They are changing PICC line. Not changing, but they are managing PICC lines. They are managing very complex wound care and very difficult medications regimens. And so what we did is we added in to that value what a registered nurse would be paid. And so this new number really looks in totality at all of the complex care that family caregivers are providing, in addition to things like helping with toileting and other tasks that they do on a daily basis as well.

Darleen Mahoney [00:05:03 - 00:05:24]

It's a big commitment. It's not a job for the week, and it's definitely not job for the week. In terms of physical ability as well, I think that can be something people don't think about and can be overlooked. That, you know, when you're helping someone with toileting and things like that, you have to have some good upper body strength to kind of help maneuver some of those things. So.

Rita Shula [00:05:24 - 00:05:54]

Absolutely. And you have to have the right mechanics. Right. You have to understand how to do this. So often we hear stories of, let's just say, spouses, that a wife is caring for her husband and there's a difference in size. And that individual, that wife might not have been taught how to actually get that individual, her husband, from the bed to the toilet or from the bed to the wheelchair and is actually impacting their own health.

Darleen Mahoney [00:05:55 - 00:06:09]

Yeah, yeah. I mean, I know that. I don't know what the statistics are, but I know that sometimes you can see a trend where the actual caregiver declines during that time frame and that person they're caring for could actually outlive them.

Rita Shula [00:06:10 - 00:06:47]

Absolutely. And you know, that is a point that I try to make often to family caregivers, especially when they're challenged to ask for help, they don't want to burden other individuals. I think it's really important that caregivers see, seek out to the best of their ability in the communities that they have that support because too often we see that individual decline from what they're doing, but also from not being able to get to their own provider, their own doctor or nurse practitioner to be able to get that support and that help for themselves.

Darleen Mahoney [00:06:48 - 00:07:20]

Yeah, I know one thing that we've really stressed on this podcast is caregiver resources. There's so many out there, but I know that you can like kind of get pigeonholed into a routine and being at home and getting overwhelmed that you don't. And you think you can do it. I mean, I think that, you know, honestly, and as women, I think we come in and we want to be Superman or Superwoman and realize that it can be very overwhelming and it does take a toll on your emotional status as well as your physical.

Rita Shula [00:07:20 - 00:08:04]

Absolutely. And I think one thing about what you're saying, there is oftentimes, and I just did it myself, we talk to caregivers about the importance of them seeking help. It's really important. It's not all on the caregiver. If you're a provider, if you are even in a faith based community, if you are a member of that person's family and other services and supports in the community where, where these caregivers are engaging with you all the time and you see the tremendous load that they are carrying, I think it's on other individuals, it's on organizations and other entities to say to the caregiver, I'm recognizing this load that you're carrying and here is a way that I can help.

Darleen Mahoney [00:08:05 - 00:08:32]

Yeah, yeah. And even considering some respite, making sure that you get your respite, you need your time as well and you need to be able to get away, go, go on a vacation maybe without feeling overwhelmed. So I think that that's something you always have to consider and you have to really, you have to stay on top of it because you can just get so in the weeds of taking care of someone, especially if they're declining or have cognitive issues. It can really be very stressful.

Rita Shula [00:08:32 - 00:08:33]

Absolutely.

Darleen Mahoney [00:08:34 - 00:08:47]

So one of the reasons why is the cost going up. So if you were to look at like a few years ago what the cost of caregiving was then and what it is now and kind of why that would be.

Rita Shula [00:08:47 - 00:10:49]

Well, one of the things that we talked about. And it really is that economic value of the care they're providing. And so when you look at the cost of caregiving, that could be a range of things. This particular report is very much looking at. If we were to pay a family caregiver the equivalent of what a home health aide or what a registered nurse or someone, another professional coming into the home would be, this is what is covered in that $1 trillion. And part of what we see is not only the cost of wages going up for these paid care workers, but we also recognize, again, the complexity of the care that's being provided and the number of hours of care that are being provided. Caregivers are doing much more and giving longer and more hours of care. So when we look at that, we're looking at 49, almost 50 billion hours of care that are devoted to family caregiving. And that is an absolute increase from previous years. And when you kind of break that number down, because again, that's a huge number. And I can see individuals saying, what does that mean? Those number of hours is the equivalent of 23.8 million full time workers. So again, when we look at the totality of what family caregivers are doing, that's huge. And they're spending that amount of time on family caregiving versus doing other things. So we know that family caregivers with that 50 billion hours of care, that's more than they're spending on religious activities and volunteering, things that give them life, cleaning their own homes and really things like preparing food and drink and other day to day tasks that family caregivers as individuals want to do for themselves. They're actually giving more hours to the individuals they're providing care for.

Darleen Mahoney [00:10:51 - 00:11:14]

Yeah, I know we chatted about this a little bit in the last podcast that we talked about. Some of that growth, is that from people living longer or kind of more people choosing to go that route just based on maybe cost for other decisions as well as the heart, because that's clearly a bit. If you don't have the heart for it, don't do it.

Rita Shula [00:11:15 - 00:12:12]

Well, a lot of people, unfortunately, even if they don't have the heart for it, their wallet tells them that they have to do it. So we too often are putting people in a position where it's really their only choice. And so, yes, to your point, we see caregivers that that care you opened up with, this is being brought more and more into the home. Individuals are living longer and they're living longer with more illnesses, more chronic diseases, and then we add on things such as Alzheimer's and other related types of dementia. And all of that care is being brought increasingly into the home and. And who is doing that care? There are other supports in community. Individuals who are on Medicaid may have waivers that allow supports to come into the home, but caregivers are increasingly doing that work themselves.

Darleen Mahoney [00:12:12 - 00:12:41]

Yeah, I mean, the fact that you said that they were doing wound care and working with people that have PICC lines, things like that, that honestly kind of blew my mind because I'm thinking to myself that that is a home health. That's a skilled person that would typically come and do that, and regular folks are learning how to do it and they're doing it well and they're taking care of their family. And I applaud them for that, but I don't know.

Rita Shula [00:12:42 - 00:13:46]

Yeah, I mean, you absolutely applaud them for that. They are essentially keeping people alive. And I think that that kind of goes over the head of the caregiver themselves as well as those professionals that are putting that onus on that family. Caregiver caregivers are doing this essential work that is literally keeping people alive, that is keeping people healthy, that is helping them to stay as independent as possible in community, but they're doing it without any type of oftentimes essential support. So it's basically caring without the pay and with few resources. And the thing that we know is you won't hear too many caregivers publicly complain about that. When we talk to them, we hear their struggles and they, with pointed questions, speak to some of their challenges in this space. But what we need is this recognition of this care that is being provided and making it essential that they receive the supports they need to do that care.

Darleen Mahoney [00:13:47 - 00:14:27]

Yeah, yeah. And AARP has support. So that's one of the things you have solutions for caregivers and resources and all the things. And that's one of the things that I really like about AARP is that you connect in a gazillion different ways with, you know, the 50. I want to say 55 plus, but I think it's actually 50. If I'm not mistaken, it is population. So I do think that that's something that I just love that you have all these different resources and you really advocate for seniors, you advocate for their families, you advocate for their caregivers in so many different ways to try to make a positive impact across the board.

Rita Shula [00:14:27 - 00:15:22]

Yeah, absolutely. I mean, caregiving is a huge priority, a top priority for aarp. We recognize the tens of millions of people out there who are really trying and really need that bonus, that extra support that they deserve. And so to your point, we have resources on our website, aarp.orgcaregiving and we're also fighting for financial relief at the state and federal level too. We recognize that policy, as difficult as it may be for the everyday person to understand it, but policy can really impact and provide those supports that caregivers are looking for. And so our state offices across the country, including Florida, are fighting and advocating every day for the needs of family caregivers and the recognition of the supports that they need.

Darleen Mahoney [00:15:24 - 00:16:03]

Yeah. So one of the things that I talked about some years ago and I haven't followed up on it, I know there was an act called the Elizabeth Dole act and I don't know if that ever got passed or if that's something that they're working on still. But I do think you have to find comprehensive solutions for these folks that are taking care the unpaids because they're unpaid. And the reality is they could go work another job or go do rover or go do something different where they can earn that income and instead they're limiting their own income to help take care of someone that they love. So I mean, something like tax credits, things like that, are those things that are in the works, Is that something that's being considered?

Rita Shula [00:16:04 - 00:17:52]

Absolutely. And you know, I'll back up just for a second that 60% of caregivers are working full time jobs. They are working while they're doing this additional part time job almost of being a family caregiver. So they are giving at multiple ends. Yeah. And yes, there are currently a number of policies and advocacy in play. Caregiver tax credits is definitely one of those things at the state level. And then we're pushing for it at the federal level as well. It has not passed at the federal level, but increasingly more states are looking at, you know, really recognizing the out of pocket costs that family caregivers are really putting in to help pay for medication, to help pay for wheelchairs, food, all types of things for the individuals they're caring for and really looking for some sort of reimbursement for that to be able to offset some of those costs. We're also looking at things like paid family leave. It's incredible the number of individuals that aren't covered and don't have the opportunity to get paid when they have to take time off to do these essential things that they're being asked to do like take someone to the doctor or sit by someone's side in the hospital. And so it puts caregivers in these really challenging situations where they want to take care of the individuals in their lives, but they're also trying to balance that with just being able to go to work and pay for their own bills.

Darleen Mahoney [00:17:53 - 00:18:04]

Yeah. So employers can be, if you're working full time and you are a caregiver, there can definitely be adjustments made for that on the employer end.

Rita Shula [00:18:04 - 00:19:43]

Absolutely. And we do see more employers really beginning to recognize, wait a minute, our employees are doing so much in this space and it's potentially impacting what they're able to do in the workplace. They need supports to be able to be come to their jobs full and whole. And they recognize that there are these outside responsibilities that caregivers are doing and caregivers of older adults. And we haven't even really brought up sandwich generation caregivers. Right. So those individual which becoming even more exactly that are providing that elder care and trying to provide childcare at the same time. And so there are a lot of impacts, but I like to look at there are a lot of opportunities. Right. And so I'll go back to looking at the individuals in community, the organizations that can really provide support and I will add employers to that. It's important not only from a benefits perspective, but it's important from a culture perspective. Employers need to make sure that their organizations represent and recognize and become a culture of care so that I as that caregiver, if I'm caring for my mom and I have to have a meeting at a nursing home or I have to go to the doctor to have a meeting with their geriatrician, that that is accepted and supported in the same way as I need to go to my son's soccer game. Right. Or I need to go to my daughter's swim meet.

Darleen Mahoney [00:19:44 - 00:20:14]

Yeah, absolutely. Absolutely. I totally agree with you. And I think that that would be great to see some things made in that direction that are really positive for caregivers where they can have that peace, where they can go to work and not feel like they're going to get penalized if they have to do something with someone that they're caregiving for. So I did want to ask you, I know we're talking about this report. Does this report vary or do you have the link for it where folks could look at it, kind of see where it varies state by state?

Rita Shula [00:20:14 - 00:21:07]

Absolutely. This is one thing that we are very excited about this report from year to year is that we are able to provide state data and that it really can show the range Right. In terms of the number of caregivers, the total hours of care that the caregivers in that state provides, the overall economic value for that state and even the average hourly value of care in that state. And so it's a resource for organizations in that state, but it's also a resource for advocates and legislators to really be able to understand what's happening in their state and then look across at similar states and see how they compare. This report can be found that aarp.org valuing okay.

Darleen Mahoney [00:21:07 - 00:21:22]

And I'm going to include that link in the description as well. I'll also include a link to caregiver support on aarp so folks can click on that if they're caregiving currently and feel overwhelmed or need additional resources.

Rita Shula [00:21:22 - 00:21:23]

Excellent.

Darleen Mahoney [00:21:24 - 00:21:37]

Yeah, yeah, definitely. Was there anything that we didn't cover? Because, I mean, I just, we've talked about a lot, but I feel like I could talk to you all day. So. So is there anything that we, you know, you, we didn't talk about or you feel like is important?

Rita Shula [00:21:38 - 00:22:32]

There's a lot to cover. I mean, I think the one thing that we didn't talk about, you talked about AARP advocating for adults 50 plus. I want to also recognize the younger caregivers that are caring for adults 50 plus. I think a lot of times younger caregivers, those under 50, whether you're talking about a 20 year old in college or you're talking about a 40 year old millennial in that sandwich, that recognizing that caregiving really is across the lifespan and we're increasingly seeing all of these concerns and challenges that are impacting all caregivers regardless of what their age is. And so when we talk about, when AARP talks about supporting caregivers, we want to recognize that caregivers of all ages are caring for adults 50 plus as well as children.

Darleen Mahoney [00:22:33 - 00:22:49]

Yeah, such a great point because I really do. When you think of it, you kind of pigeonhole people and you think it's like over 50 taking care of an elderly. And that's not always the case. So you're absolutely right. And I think it is definitely starting to trend younger.

Rita Shula [00:22:50 - 00:23:26]

Yeah, I mean, we definitely see more and more younger individuals. I also think it's because we're talking about caregiving more, because we see it on, on social media more. We see it, you know, in different stories, you know, that we're watching on tv, different TV series and things like that. It's becoming, it's normalizing. Right. We're normalizing this conversation of care and creating a culture of care we're trying to change that narrative of what care looks like. And as we do that, we become more inclusive.

Darleen Mahoney [00:23:27 - 00:24:11]

I love it. Absolutely. I think bringing the light to it, acknowledging it, making it mainstream so that it's not something that people do feel like they're isolated from because it is, you know, this person in the show is a caretaker. This is, you know, whatever it is more a part of. I'm trying to think of the word our generations that we're going to start seeing more and more of. And that is supportive versus, you know, not so. I appreciate that. I appreciate everything that you do, Rita. I love talking to you and everything that AARP does and, and shares with our seniors, their loved ones, the 20 somethings, the sandwich generation, all those resources. Well, so thank you for joining me today.

Rita Shula [00:24:11 - 00:24:14]

Thank you for having me. It's always a pleasure to talk to you.

Darleen Mahoney [00:24:15 - 00:24:31]

Absolutely. And if you enjoyed this podcast, we have over 130 now episodes available anywhere you enjoy podcasts, Spotify, Apple, wherever. Check us out like comment, subscribe. Thanks for listening.