Listen: The Essential Podcast, Episode 104: Understanding the Challenges of Caregiving while Working with Susan Reinhard

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Nathan Hunt: This is The Essential Podcast from S&P Global. My name is Nathan Hunt. From a business standpoint, it's easy to view your employees' personal lives as a liability. Well, we may talk about work-life balance and employee without family who dedicates themselves wholeheartedly to their job may sound desirable to some managers. Some companies actively select for this type of employee and congratulate themselves on being extremely hard core.

However, if your company depends on some form of human interaction through, say, sales or customer service, having a workforce consisting solely of antisocial workaholics, might be ill-advised. Companies like this might consider selecting for qualities like kindness or empathy. Unfortunately, kind and empathetic people tend to have rich personal lives filled with friendship and family ties. That means that your best employees are likely at some point in their lives to become caregivers.

Whether these people end up caring for a young child or an elderly friend or relative, they are going to need a little flexibility. This isn't a small issue as the population ages in the developed world, more and more people are going to need to care for an elderly relative or friend. Nearly 48 million Americans are currently caring for someone elderly, and 61% of those people have jobs. Chances are very good that one of your coworkers is quietly balancing work and caregiving in their life.

To understand the challenges of caregiving for today's workers, S&P Global partnered with the AARP to conduct an online survey of 1,200 full-time and part-time employees of U.S. companies, who provided more than 6 hours of unpaid care to another adult. Today, I am joined on the podcast by Susan Reinhard. Susan is the Senior Vice President and Director of the AARP Public Policy Institute and the Chief Strategist for the Center to Champion Nursing in America and family caregiving Initiatives. Susan, it is a pleasure to have you today on the podcast.

Susan Reinhard: Thank you. Thanks for inviting me.

Nathan Hunt: So Susan, help me to understand just on a macro level here what caregiving looks like today. Who is providing this care? How much time is this taking up? What kinds of things do caregivers need to do?

Susan Reinhard: Well, thank you for that question. I'm pretty passionate about this topic. I'm a former visiting nurse actually and a policy person, so it's a very important topic, and I'm so glad that you're doing this. There are 48 million family caregivers in the United States. And when we say family caregivers, as you already noted, it doesn't mean you're necessarily a blood relative.

It could be a neighbor, a friend, somebody that is willing to help. I like your kindness and compassion idea. Although I have to tell you about 50% of family caregivers feel they have no choice. They really need to be doing this no matter what. So it's a very big deal. Family caregiving can include very -- I'll just say, basic things like maybe you help somebody go to the doctors, transportation or pick up some medications or go food shopping.

But it really starts to quickly become much more than that. They call those instrumental activities of daily living. And then you start moving into daily activities, where you have a lot of responsibility, it could be bathing and dressing and feeding and all kinds of more personal kinds of care and more and more family caregivers are providing what I call complex care where they are doing things that I'm fond of saying made me shake as a nursing student, the first time I did it, even medication.

So that sounds so simple, right? You give a pill, a couple of pills or something. But most people who have these needs for help are taking a lot of different medications, and they can interact with one another. And some of them have to be crushed and all kinds of things. And then there's the injections. Family caregivers are giving injections, not infrequently. And the real issue for them is where they ever thought how to do any of these things.

They often leave the hospital with a piece of paper that says here, your medications you've got to follow, but they don't really get to know looking -- they have to look them up themselves, basically, for the most part. So the people, as you pointed out, these are people, 48 million people, it's a lot of people. And you can talk about an average, you can say the average caregiver is a woman taking care of her mother, typically white, for example.

But that average just ignores the fact of the great diversity of family caregiving. So for example, 25%, 1/4 of them are millennials. It's not a woman who is in her like 40, late 40s or 50s. These are millennials, very racial and ethnic diversity is prominent, growing diversity, I would say. And people, about 30% of family caregivers are sandwich generations. So they are taking care of children, somebody under the age of 18 as well as a whole other generation, a parent or an aunt or an uncle who is aging.

And of course, aging is a big part of this, right? We know that we're an aging society globally. We're an aging world. So it's not just the United States. And by 2031, out of every 5 people in the United States will be 65 years of age or older. And that means that a growing number of people, as I said, like 48 million people and counting are caring for parents and children, often unpaid, usually unpaid, why they also juggle their work and caregiving responsibilities every single day.

Nathan Hunt: Susan, knowing that I was going to talk to you today, I reached out to someone in my life who is currently providing this kind of caregiving for an elderly relative and asked them about the experience. And what I got back was a lot of the challenge of caregiving is -- it is an emotional challenge.

There is the caring for an elderly person, which can bring its own emotional challenges. But there's also the emotional challenge of all the balancing. Is this part of the -- I mean there's practical challenges of caregiving as you say, giving medication, but what about the emotional part of this?

Susan Reinhard: Absolutely, they're juggling. Most of them are juggling either full or part-time work. They feel guilty everywhere. Well, I'm not doing enough here and I need to do this and all of those things. The survey that you mentioned from S&P Global and AARP found that more than one in four of them have shifted from full time to part time.

That's because of the emotional as well as the physical work that they're doing, they are shifting or they've reduced hours of some kind. So that's a lot, one in four of them are doing that. Sixteen percent have turned down a promotion because they feel that they can't with both the emotional and the physical demands of what they're doing.

Sixteen percent of stuff working entirely, at least for part of the time and another 13% have changed employers because they didn't have the flexibility they needed to juggle in that way. So all of those things are changes that bring along with it the emotional effect of being a family caregiver as well as the day-to-day demands of providing care.

Nathan Hunt: Susan, why do you think caregiving is suddenly on the radar for companies, right? I just feel like I'm hearing more about this now. Hasn't it always been true that employees had personal lives? Why are we focused now?

Susan Reinhard: Well, I think that we are more focused now because even the bosses are having this. It's much more that we call it normative. It's becoming an experience that almost all of us are experiencing either we did or we're going to or we're going to need a family caregiver ourself. We've also been trying hard as AARP and other advocates around the country, pushing for more attention and saying, we need to work across all sectors of society to be able to support these people who are providing $600 billion of free care every year.

And on top of that, they are spending $7,200 annually out of their own pockets. So it's a big financial. They're like a shadow economy, we call it. So they're juggling and we keep pushing out that information not only to those on the Hill, which we just did this week. We brought a number of people from -- hundreds of people from all of our 50 state offices to the Hill and celebrities trying to get the word out to the public policy folks federally, a lot of work with public policy folks at the state level.

But the private sector is critical because you -- in the private sector, you are face-to-face with family caregivers every day. And there's so much that the private sector can do to make it easier for those family caregivers to be retained by the employer. So we know the job market sometimes is challenging, and it is right now, you do not want to lose these employees. These are dedicated, hard-working employees that need a little break. They need to support, they need flexibility to be able to continue working and not do what I just said, step down their hours or leave that employer altogether.

Nathan Hunt: Well, I feel like it goes back to the idea of people with that kindness and that empathy, right? Those people actually sound like the best kind of employees, the type of people who are -- they're the glue people on your team, the people that everyone feels like they can count on, right?

Now I know for many of them, there isn't a choice, but the reality is that for a kind and empathetic person, they feel there is no choice because that's who they are, so I can imagine why companies would want to hold on to these people. I imagine that they would be unusually valuable in ways that wouldn't show up on statistics.

Susan Reinhard: I think you're right. I mean they are caring for -- by the way, they're usually caring for the children of their relatives, neighbors and friends that just need a little help every now and again. So in order to take on that responsibility, you do have to have a depth of compassion and a desire to help others. There's no question about that. I've mentioned how many feel they have no choice to do it all.

It's like what else can I do? This person, in my family or my neighbor has to have my help because if I don't, what's going to happen to them. But I also am very committed to my job. Many family caregivers will tell you that they love their jobs, that's where they feel best. They feel it's almost respite from what they've been doing. So they put a lot into their jobs because they want to retain those jobs.

They want to be promoted just as others want to do. The issue with many family caregivers, which is shown in this report, is they often feel they shouldn't even tell anyone that they are a family caregiver. First of all, they don't consider themselves a family caregiver. That's a term of art that we use. They consider themselves a daughter, a son, a brother, a sister or whatever it is the relationship is, but that's what they are.

And they shy away from telling others what's going on in the rest of their lives because they are afraid that they will have discrimination, that they will experience not being asked to have a promotion or suspectful if I have to leave work a little early to be able to do something, right? Even though everybody has to do that many times for their own family, their kids. They want to go to a baseball game or they want to do something else.

But they feel that the light is shining on them if they divulge that they are a family caregiver. So as an employer, that the best thing they can do is to, first of all, acknowledge that much of the -- many of the people in their workplace are dealing with this. And then secondly, to make that okay to let those -- let their employees know in general that we understand the needs, the current societal needs to provide this kind of help and offer as much flexibility as humanly possible for everybody, everybody wants flexibility, right? It's not only family caregivers.

Nathan Hunt: Yes. I think you've raised such a key point, which is that the people who are doing this work are frequently doing it in ways -- they're doing a lovely thing, but they're trying to hide it, right? And when you think about the numbers, you're talking about basically one out of every six Americans is doing this caregiving.

So as I said in my introduction, you almost certainly are working with someone who is going through this right now and is trying to hide this because they feel like they're alone and they will be judged for it.

Susan Reinhard: Absolutely. You've captured that very, very well, but they're not alone, right? Right around them, our people are dealing with the same thing, but they don't even know it because nobody wants to bring it up. We have found that people are more likely to talk about their -- this care that they're giving and their experiences when they go to a WeightWatchers' meeting or when they go for coffee with somebody, they don't really want to talk about it at work.

But those that do that have the environment that they can, not -- I don't mean to talk about it every day and whine. I don't mean that. But just admit, I have to leave early today because I have to do this, to take my mother to the doctors, for example. And not feel guilty about that because usually that happens and then they get back online, they get home and they continue working.

And that's true of a lot of people, whether they're providing care or not, now that we have the ability to do that, at least for some jobs, not all jobs, I realize. But there's so much that the private sector can do to ease this anxiety, this worry about my life, the fact that I'm putting so much money, over $7,200 out of pocket and that many of the companies that are part of this S&P Global and AARP report are doing things about it.

And we have been working with them, big and small. They're not just the big companies, small companies, too, are starting to try and they're reaching out to AARP as we've been more and more visible in this space and saying, "Well, what can we do? What are others doing?" Big and small ideas, and we're providing that kind of technical assistance at their request.

Nathan Hunt: I'm going to ask a question at the risk of sounding harsh or unfeeling. But why should companies care about the needs of caregivers? I know it sounds harsh, but is there a reason that shareholders, for example, would want to invest in companies with good policies for caregivers?

Susan Reinhard: Well, I think in the private sector and boards and other investors, they want -- I think you're a better expert at this than I am, but they want that image for one thing that we are good corporate citizens. They often seek awards for being the best workplaces, right? In fact, AARP is very proud to get those kinds of awards. It's very good.

But as I said before, they also should care. They should care and do care about retaining productive employees, bottom line. That's -- if you don't -- if you keep having turnover, so you lose this caregiver, you lose this one, do you lose that one, you've got to replace them. And the replacement costs of recruiting, training, retaining is not insignificant, and I'm sure you know that across different industries, it can be quite substantial.

So this is a business decision. It's not just being nice. It's a decision that says, I care about having a productive workforce that can focus on their work and whatever benefits I can offer. And benefits doesn't have to be all money, but benefits, information, support in that way will be good. It will be good for the business.

Nathan Hunt: Susan, you had made an earlier point, I think the number was, you said, 16% of our survey respondents said that they had turned down a promotion. And that jumps out to me because, who is up for a promotion? Your best employees are up for a promotion. The people who have proven to be valuable to your company are up for a promotion.

If those people feel that they cannot deliver more value to the company, that the company sees them capable of delivering, moving into higher-level management roles, if those people are turning down promotions, then there is an economic loss.

Susan Reinhard: There's an economic loss to the company and there's an economic loss to the person and not only to that individual, but to their families, and it starts to ripple generationally through their children. They have less coming in over time.

So it's a big decision to turn down a promotion. When generally, you want this promotion, right, but to think I just -- I'm not going to do a good enough job if I can't juggle. But if you help me juggle, I probably can accept the promotion.

Nathan Hunt: So let's talk about -- help me juggle. What types of policies are beneficial, are helpful to caregivers?

Susan Reinhard: So the first one is, and I know I'm pounding it at you, flexibility, flexibility and flexibility, however you can do that. And I can tell you, I told you I'm a nurse by background and you think of nurses, police, people that cannot work remote. Actually, there's some things you can do remote as a nurse, there really is. But you can also allow job sharing. You can allow schedule sharing.

So I can say, well, I'm supposed to be working today, you're needed in a hospital, say, for example, but I can't. I have this issue I have to deal with. So can I have you bring in somebody else and hospitals can have pools. So I actually did that once, a long time ago. So you can call up a per diem nurse to come in and not feel bad about it. This is what I really have to do. That's just one example.

So even for those that have pretty regular schedules that you don't think they can hop on a Zoom call, there's ways that you can provide some flexibility for people. So that's the #1 thing. You can also provide access to support groups, career coaching, financial advising. What reason -- how do I manage the money that I have? Are there benefits that I can use? Can I have enough sick time paid leave time that there's public policy, we work on those issues.

But employers can make that possible themselves in the private sector. So doing that. And then one thing we found out in the report, which was very -- it was enlightening for me, frankly, is that even when employers offer benefits from family caregivers, like say, family caregiving leave, we even have that at AARP, two weeks of leaves that we can take just for caregiving.

But if you don't know you have those benefits, then you don't have those benefits. So how do you get the word out that you have these benefits and that it's okay to ask for them. That gets us back to I better not tell anyone, I'm a family caregiver, right, because then I'm going to be treated differently or whatever, but letting them know and policies that address that lack of awareness, how can you get it out, not just for the family caregivers, but the whole organization should be aware so that the employee who isn't caregiving doesn't feel, well, they get more flexibility than I do, right?

It's got to be fair. It's got to be available. But the one that didn't have that responsibility today is very likely to need to do it in the future. So just understanding that, that family caregiving is a natural phenomenon these days. At some point, it's going to affect you one way or the other is something that the private sector can be part of.

Nathan Hunt: That is such a great list of possible policies for companies to adopt. I also have to think about it from the family caregiving perspective. There is a unique need for flexibility, which is it's the unscheduled flexibility. When you are really needed as a caregiver, there is often very little warning.

You can't schedule it the month, the week before because there is a medical issue and all of a sudden, you need to attend to something very quickly. So I think that there is also a cultural change that we need to go through as a society where it is okay for someone to say, I am sorry, but I'm just not available this afternoon. There's something I need to do.

Susan Reinhard: That's right. And one of the other findings of this report is that family caregivers in general, feel there's much more support and acceptability for parents who are caring for children. So the example you just use is unscheduled. There are a lot of times you get a call that from the school nurse -- I used to be a school nurse, too. The school nurse that says, you've got to pick up this -- your child and you really need to do it in the next half hour for any number of reasons.

That's very common. I see that in my own family to this day. But it's somebody caring for their mother, let's say, the perception of that family caregiver for her mother does not feel the same acceptance as their next-door neighbor, so to speak, in their office gets to run home and get their daughter. So that is a culture.

You talked about cultural change. We need to understand that there's a lot of ages involved, and it's caregiving at all ages for people of all ages, and we need that common understanding of flexibility to be able to do both that work and the work that you're employed for.

Nathan Hunt: Let's talk a little bit about inflation. It's in the news. It hits us all. But are there extra pressures for caregivers when inflation gets high?

Susan Reinhard: Well, since they're already spending over $7,200 out of pocket, and by the way, that's more like $9,000 if the person you're caring for has dementia, and it's even more like $11,000 plus if you are a long-distance caregiver. It's not necessarily you're living with that person, a person may be across the country and you have to drop everything and go fly to California to take care of -- I mean, I actually just talked to somebody last week about that, that's exactly what's happening to her.

So it's money and it's what are you spending this money on? It's often the co-pay for the medication, for example. Well, if medications are rising, then the out-of-pocket cost for that medication that you're picking up for them. So the cost of wound care, you have to do wound care, and I need the materials, the gauze, the bandages, the tape, whatever it is, all of that is going up.

And so inflation is no doubt going to affect that number I keep using, the over $7,200, the next time we really do another study to capture that, we do it every couple of years, we will see that. It's going to be more money that they're putting out of pocket.

Nathan Hunt: This was -- this particular survey was actually a continuation of a previous survey that S&P Global and the AARP had done during 2020, so height of the COVID epidemic. Why did you want to revisit the study? And what kind of differences did you see this time around?

Susan Reinhard: That's a very good question why we wanted to relook at the study we did in 2020 a few years later. Actually, the data is from 2023 when we did the survey. And in general, it is what effect did COVID have? And was that -- was there anything -- any lessons we can learn from that. So in general, COVID was very hard on family caregivers. It's hard on everyone. We know that.

But family caregivers had to worry about, can I have my mother going to a nursing home, for example. And oh my God, that's where people are dying, so I can't. Therefore, I need to keep her with me or I need to give more services or pay for more support. But guess what, there weren't any home care workers that would go into the home, right, because we were all on lockdown.

So there was a lot that was going on, and it put more attention into the challenges of family caregivers. They weren't even able to visit somebody in a hospital or in a nursing home. So all of that tension and stress became more elevated. But there was also the idea of hybrid work or actually just work at home, not everybody, right? But for many people, they were able to have more flexibility than they had before.

So we wanted to see, for example, how is that going with flexibility? Is that something that could continue to stay in place? How important is it to you to have that flexibility. So that was one of the reasons we wanted to look at, did they come back to work? What are you still interested in doing this juggling, and what is it you think you need now post COVID? So I think this report really does provide that kind of insight for now. I don't know whether we'll do it again in another 3 years. We'll just see. But those two reports, I believe, are very helpful for the private sector.

Nathan Hunt: Well, I can tell you from an S&P Global perspective, with the demographic trends we're seeing, I think revisiting this particular study in another couple of years is very important economically from a market perspective and also from just a societal perspective. It is -- this is crucial information.

Let me ask you a question, which may be occurring to some of our listeners, which is why is the AARP focused on caregivers in the workplace? I mean, correct me if I'm wrong, but the RP stands for retired people. So why are you focused on people who are still working?

Susan Reinhard: Well, AARP no longer calls itself the American Association of Retired Persons because it is not full of members that are retired or fully retired. We have many, many people who are still working and want to continue to work and where people are working well past 65 or 70. So we don't think the focus is on retirement.

We also represent an organization of -- that really reaches about 100 million older people and their families. So the mission of AARP from its beginning, from our founder was what we do, we do for all. That is what we say, what we do, we do for all. And that's what we're doing in family caregiving and working family caregivers.

Nathan Hunt: That is awesome. Okay. So you do all of this for all, but I'm a little selfish. So let's talk about me for a minute.

Susan Reinhard: Sure.

Nathan Hunt: I very much hope to be an elderly person someday. It sure beats the alternative. So what policies should I be encouraging at work now to make caregiving easier? And I am clearly assuming here that some friend or relative will be willing to help me out with care. But what should I as a person who will be older, what should I care about now?

Susan Reinhard: You can care about the culture change you brought up earlier. What can you do personally to drive this focus that there are family caregivers right here, right now, right next to me, and they deserve to be heard safely? There should be a space that they can admit and be proud that they're family caregivers and what they're contributing not only to their loved one, but to society.

Because if they don't keep doing what they're doing, then that person is likely to need help in services that very often would fall under public expense or other expense, and that's that $600 billion I'm talking about that they're giving in free care. So that is a public service that these caregivers are doing. And again, they're also giving out their own money on top of that.

So trying to raise the awareness of what these individuals are doing and helping them to value themselves, to stop feeling invisible and to feel that they are supported in their work environment is something you can do. Every one of us can do, caring about those that we work with should be a fundamental part of the ethic of a business.

Nathan Hunt: Susan, it has been such a pleasure to have you here today. I just -- I'm so inspired by the work you've been doing. And I am really looking forward to continuing collaboration with the AARP.

Susan Reinhard: Thank you for the opportunity.

Nathan Hunt: The Essential Podcast is produced by Patrick Moroney. At S&P Global, we accelerate progress in the world by providing intelligence that is essential for companies, governments and individuals to make decisions with conviction. From the majestic heights of 55 Water Street in Manhattan, I'm Nathan Hunt. Thank you for listening.

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