Ep 89: The Invisible Workforce: Why Caregiving is Both Personal and Economic Crisis with Paul Irving

In this episode of BrainStorm, Paul Irving discusses the PBS documentary produced by Bradley Cooper called Caregiving with host Meryl Comer. Their conversation centers on the widespread impact of caregiving in America, where over 53 million people provide unpaid care for loved ones with conditions like Alzheimer's. Irving emphasizes that caregiving is a universal human experience that creates significant economic challenges, with the Milken Institute estimating losses around $1 trillion annually. Irving advocates for developing "care-aware cultures" in workplaces and society and he stresses that human capital is any organization's most important asset. This is a must listen episode for everyone. 

Learn how you can share your personal story at stories@usagainstalzheimers.org.

Transcript

Paul Irving (00:00):

Meryl, when I think of the most important characteristic of any business, the most important characteristic of any society, it is our human capital. It's the people who work with us and for us. So those employers who figure out ways to keep people at least metaphorically on campus, to keep people in the game, in the mix, even while they're going through these life challenges, whether it's personal health or care for someone else, those are the employers that are going to succeed in the future. They have competitive advantage. They're going to be the winners.

Introduction (00:30):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient center, nonprofit organization. Your host, Merrill Comer, is a co-founder, 24 year caregiver and Emmy award-winning journalist and the author of the New York Times bestseller, slow Dancing With a Stranger.

Meryl Comer (00:48):

This is BrainStorm and I’m Meryl Comer. Every family has a care story. It's very personal and too often attached to injury, aging, or disease. The new PBS documentary Caregiving with producer and actor Bradley Cooper, highlights the challenges and triumphs of caregiving in America. Our guest today is Paul Irving, consulting producer on the documentary Senior Advisor at the Milken Institute on the Future of Longevity, and he's on the faculty at USC Leonard School of Gerontology. Welcome, Paul. Thrilled to have you. And I just named a few of your titles. Thank

Paul Irving (01:31):

You, Meryl. Well, I mean, look, my most precious title is father and Grandfather. I'm on a bunch of boards and missions and various other things to try to keep me active and out of trouble.

Meryl Comer (01:42):

Dr. Bradley Cooper's caregiving documentary was directly inspired by his personal experience caring for his father during personal battle with lung cancer. Oh, were you motivated by a personal caregiving experience or is it an extension of your policy work at the Milken Institute?

Paul Irving (02:01):

Well, both. I've certainly had my own caregiving experiences with my parents, although I have to say Meryl, nothing like what you, I know, experience with your husband. My mom, who actually lived into her very late nineties, died a couple years ago. Her brother and I had the experience of daily interaction with her and frankly with her caregiver, as you know, as well as I, this is a shared experience of tens of millions of Americans, and I'm just one of them. But certainly it's also something I'm really interested in concern about in my work, the impacts both on family caregivers and on direct care workers, particularly in the current environment.

Meryl Comer (02:41):

Paul, in most families, men tend to handle financial management versus the intimate personal care of a sick loved one. And what touched me most about Brad's dynamic with his father was the intimacy of care, which he admits is the hardest. Let's listen to this excerpt from the new Caregiving documentary with Bradley Cooper.

Bradley Cooper (03:03):

Like most people, I didn't even think about caregiving until my father was diagnosed with cancer. My dad was somebody who I idolized. I used to dress up like him when I was a kid in kindergarten and get made fun of. 'cause I wanted to wear like a suit and a tie. And then to go from that to giving him a bath is, is a, is a quite a traumatic thing. The only good thing about somebody who has an illness that's terminal is that you really can try to enjoy the moments that you have left. We went around Philadelphia, we went to a Phillies game. We sat in the dugout. So that was a really lovely thing to be able to do. He was at a point where he needed a lot of care. I was lucky enough that I was able to be there for him, and I certainly benefited from the help that we also got. I mean, these are heroic people that are caregivers, period. Their ability to focus and give all of themselves is something that I stand in awe of.

Paul Irving (04:16):

Bradley Cooper's a highly educated guy, Georgetown alum, not just a movie star, obviously very close to his dad who had cancer, and I think he expresses both the pain and sadness and loneliness of taking care of a loved one who's on the decline, but also the joy and meaning of those special moments when we know there's a lot less time ahead than there is behind. So I think he recognized, you know, very rightly, that even big, big movie star that makes millions of dollars and that has people fawn over him. At the end of the day, when it's that one-on-one care experience, it's tough and lonely and hard work. I think he wanted to and wants to elevate not only the challenge, but the importance of change to deal with it and to make it easier for people who aren't as fortunate as he is.

Meryl Comer (05:05):

More than 53 million people provide unpaid care for loved ones, many of whom also work. So we're talking about the sandwich generation that's caught between caring for a loved one and also trying to provide for their family. Well, what strains does that divided family loyalty put on the workplace and public systems?

Paul Irving (05:27):

It's extraordinary. And there's a growing body of research that confirms this. So this is not just painful and difficult and challenging for the people going through it, for those being cared for and caregivers the millions and millions of caregivers. And you know, by the way, the numbers are kind of all over the place. But what we know is that the burdens of caregiving affect employees in extraordinary ways. They lead to increased absenteeism, presenteeism, loss of productivity, challenges in recruiting, incredible challenges in retention, by the way, particularly at a time when we have relatively low unemployment rates. So the point is, this is not just an imperative for the people immediately affected. It's an economic question. If we want to continue growth in our economy, if we want to enable our employers and our businesses to thrive, we have to incorporate policies and practices that enable people to go about their care duties and to continue their work without finding the two just impossible to reconcile.

Meryl Comer (06:29):

Paul Caregiving is a core foundational human experience across cultures. But a US statistic that 5.4 million caregivers are children and adolescents, many caring for a family member with Alzheimer's is very sad. It puts our young people on the front lines of a very challenging and emotional journey, even for adults that also has tremendous negative repercussions in school. So how do we reform a system that is sensitive to these issues that are often under the radar when 75% of long-term care in this country is unpaid?

Paul Irving (07:06):

We've gotten to the point Merrill, as you know, that there's a lot more conversation, for example, in schools and in workplaces about mental health issues. But you're absolutely right. Caregiving responsibilities and caregiving challenges tend to be kind of an underused under affirmed challenge, and we need to figure out ways to elevate it significantly. And that's one of the objectives, obviously, of documentary. So this is an intergenerational challenge. You know, people think of caregiving just as an end of life issue, or they think of caregiving just as an issue for young parents. And the truth of the matter is, is that caregiving is really a life course challenge and obligation. It's our common denominator and we need to get comfortable talking about it. You know, as well as I do the famous Rosalyn Carter quote about this, about how all of us will be cared for and all of us will be caregivers in our lives. And so we should understand, we look to our left and look to our right, the challenges that our colleagues, friends and family members are experiencing. In

Meryl Comer (08:05):

Your analysis, you advocate for care aware cultures. Tell me what that looks like and what accommodations are required.

Paul Irving (08:15):

Let's kind of go back to employers for a moment, because I think right now what a very, very difficult, you know, and I know policy time with challenges to investment in public health, investment in innovation, et cetera. So I think that this is an opportunity for the private sector to step up. And there are a number of things that the private sector can do and should be doing. In fact, the Milken Institute with colleagues at shrm, at the Society for Human Resources Managers, and with US News and World Report, we are acknowledging employers who are implementing advanced care policies. These include very basic things like family leave and part-time work, and transitional retirements and virtual work, shared job responsibilities. You know, oftentimes when somebody confronts a caregiving challenge at work, there is kind of a black or white all or nothing proposition that the person feels that they face.

Paul Irving (09:10):

They either have to leave their job entirely, or what they do is they remain in their job full stress, pressure, time demands, and all the rest, and they are not able to fully fulfill their caregiving responsibilities. But the answer is they are talent. And so the question is, how do you accommodate them? Is there a way to have them share their job? Could their compensation be reduced a bit for a period of time while they work part-time? So a lot of this is just kind of common sense stuff that HR managers and frankly people in the C-suite CEOs need to think about when they think about their talent. And very honestly, Meryl, when I think of the most important characteristic of any business, the most important characteristic of any society, it is our human capital. It's the people who work with us and for us. So those employers who figure out ways to keep people at least metaphorically on campus, to keep people in the game, in the mix, even while they're going through these life challenges, whether it's personal health or care for someone else, those are the employers that are going to succeed in the future. They have competitive advantage, they're going to be the winners, and they better start thinking about it that way, particularly at a time when we have an aging population. And as we know, very, very modest birth rates. So just common sense logic.

Meryl Comer (10:25):

It struck me that when we all bought into the patient-centric healthcare system, that it was the caregiver who became invisible, we're not even listed in the epic medical record system. It would let you know who to call if something happened to the patient.

Paul Irving (10:42):

I call it care literacy. This is not just true for those of us who have the responsibilities for people like you, Meryl, who went through it. This is true for health professionals as well. So doctors, nurses, PAs, health administrators, people in the hospice business and all the rest have to be mindful of the challenges, stresses, and responsibilities of caregivers, and to put the interests not just of their patients, but of their caregivers. First and foremost, everyone involved in the health ecosystem has to recognize that family members are just critical to the decision making process, to the care process and to everything that is done for a patient. And you live through very tough ad experience, and I'd say particularly for family members dealing with dementia, because it involves oftentimes so many years of challenge to sideline the family member is just devastating. 

Meryl Comer (11:37):

Paul, in this new PBS caregiving documentary, there's a poignant profile of a young woman who returns home to help care for her grandmother with dementia, only to find that her mother has early onset dementia as well. But what was so touching was how was a member of this social media generation, she built an online support community by making her mother the celebrity and centerpiece of their often difficult journey together.

Paul Irving (12:07):

Meryl, you know that our last surgeon General, who by the way was a phenomenal and I think very impactful surgeon general Vivika Murthy, elevated the notion that isolation and loneliness or public health challenges and talked at the end of his term about the importance of relationship, service, and purpose. And I think what we know increasingly is that the importance of social connection is a critical element for all of us throughout our lives. But another wonderful documentary that's out that I should mention, I think it's called Chasing the Wind about a group of women. I don't know whether you've seen it, about a group of women who have husbands of the Lewy body. And it's a tragic and very sad story until what happens is this group of women connect with each other and then spend time with each other and strengths that they derive from those social connections with each other, sharing their stories, sharing their pain, sharing information, et cetera, is a really powerful reminder that at the end of the day, we need help and we need to be able to reach out for that help and we need to provide that help.

Paul Irving (13:12):

We need to serve others.

Meryl Comer (13:14):

Now, let's take a moment to listen to how you frame the challenge in the new PBS documentary Caregiving Streaming Live on PBS.

Speaker 5 (13:25):

We know the numbers of caregivers are multiplying,

Paul Irving (13:30):

And the challenge for all of us in the United States is how do we deal with it? Are we ignoring something that's going to affect not only every one of our lives, but our businesses, our communities, our schools, our hospitals? But how do we measure the success of America? Is it just GDP? One of the ways is our success in providing care. If we are a caring society, caring for our children, caring for our older adults, we end up with a country that's happier. It's a country where more people have the ability to work and work well. Then the next version of America could care, be a driver of our success and how we feel about ourselves.

Meryl Comer (14:27):

Our guest, Paul Irving, consulting producer on the PBS documentary Caregiving. In part two, we tap into Paul's groundbreaking work, the Milken Institute on the challenges and the future of longevity

Paul Irving (14:43):

At the Milken Institute. We did an analysis a few years ago that suggested that if you think beyond care costs, you think about the economic losses of both disease sufferers and caregivers. The numbers were closer to trillion bucks a year. So if we can tackle this disease successfully, if we can cure it, or frankly, if we can even defer it, we can defer it a couple years. Eventually, by the way, we're all going to die and maybe we'll die of something else. But if we could save some portion of that money, imagine the investment in public education and public health in infrastructure in the United States.

Meryl Comer (15:19):

Before we wrap up, I'd like to speak directly to our listeners, many of whom are caregivers, past and present. We want to hear your personal stories. It doesn't have to be polished or perfect, it just has to be real. And you can send us a short video or audio clip, 60 seconds in length, or send us an email about your experiences, your frustrations, and send them to stories@usagainstalzheimers.org. Every single story matters. Your voice helps us show Congress what families are going through and the need for continued research funding. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.

Closing (16:08):

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