Informed Aging

Episode 88: Caregiving on Camera: A Conversation with the Filmmakers

• Robin Rountree • Season 1 • Episode 88

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Robin Rountree: Welcome to Informed Aging, a podcast about health help and hard decisions for older adults. I'm Robin Rountree. I'm a former family caregiver. I've worked in the home care industry and now work for the Alzheimer's and Dementia Resource Center. The thoughts and opinions expressed belong to me and my guests, not our wonderful employers and sponsors, and before making any significant changes in your life or your person's life, please consult your own experts. Very excited about our guests today. First is Chris Durrance He's an Emmy and Peabody Award-winning filmmaker. He's produced and directed dozens of films throughout Europe, Asia, and the Mid East, for PBS' "Frontline". He's done presidential biographies for PBS's American Experience and two major documentary series with filmmaker Ken Burns.

We're talking to him today because he [00:01:00] directed and produced Caregiving, which is a four hour multi-platform documentary series. It's slated to premier in primetime on PBS stations throughout the United States on June 24th, and we're also talking to Tom Chiodo, executive producer of Special Projects National Productions for

the Washington Educational Telecommunications Association, which is the flagship PBS station in Washington dc. He's also one of the executive producers of Caregiving. We're gonna talk about this amazing film and these great guys right after this.

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For over 37 years, the Alzheimer's and Dementia Resource Center, ADRC has served as a central Florida based grassroots, nonprofit, and community resource center. They are dedicated to providing support and hope for families and individuals caring for someone they love who is living with Alzheimer's disease or other dementia related illnesses.

ADRC empowers caregivers with the knowledge, support skills, and strategies they need to help them confidently prepare for the challenges that lie ahead. To learn more, visit the website, adrc cares.org.

Robin Rountree: And we're back.

Very happy to be talking to Tom Chiodo and Chris Durance behind the film Caregiving. Now this is gonna be on PBS, correct? Yes, 

Tom Chiodo: on June the 24th. And do it will [00:03:00] appear in prime time At 9:00 PM Eastern, check your local listings on 356 PBS stations throughout the country, and then it will continue to air for four more years on local stations. 

Robin Rountree: Well, of course we'll have show notes so you can find the right links there. But how did you guys get together on this? Chris, you directed it and Tom, you're an executive director so what's the backstory on this movie? 

Tom Chiodo: . So the backstory is that at, uh, PBS, obviously we're interested in,, providing, documentaries to our viewers that address many topics and we created a platform

in 2020 called Wellbeings, which people can visit at wellbeings.org. The wellbeing platforms addresses the critical, healthcare needs of Americans, and we, Chris and I have worked on films together that have been presented on PBS on [00:04:00] Cancer, genetics... We've created films around youth mental health.

We're creating films around adult mental health. Rural Healthcare Caregiving is our next major documentary series, and we decided it was probably a two years before the pandemic create this film. And, we thought it was critically important. It's obviously delayed a little bit by the pandemic and um, it's going to be airing in June of this year and we're very excited about it.

It's a two hour documentary with 18 short films that accompany it. 

Robin Rountree: 18. 18, 

Tom Chiodo: yes. Short films. They're available on wellbeings.org. About a dozen of them. We've been rolling those films out. They're five minutes long, so they're very easy to consume. We've been rolling them out on Wellbeings and through our sponsors, partners, and other platforms, as well as on social media.

Robin Rountree: And, uh, you're, you're two guys. And honestly, when I think of a caregiver, typically I think [00:05:00] of women first. And there are some men in that category. We welcome you with open arms because we need all the caregivers we can get.

Have either of you had personal experience with caregiving? 

Chris Durrance: Absolutely. . For me, my first experience was seeing my father,, care for his second wife who had a rare type of dementia. 

She had PSP, which I'm sure many of your, many of your listeners will know about. And I watched him care for her. They were told by the doctors there was no hope, nothing to do so. They went home, uh, from that appointment and it was many, many years of intense hands-on care, dealing with so many things that you just are not warned about when you step out and when you step into that doctor's office.

Financial issues, um, health and safety issues, people wandering off. I mean, so many [00:06:00] practical things that caregivers have to deal with often on a daily basis and are never warned about. So I saw him deal with that. They were amazing together and I know that for Tom too. He's, uh, had e experience of that in, in his own family.

But for me that was a searing, a searing moment that informed everything that we did on this project. Yeah. 

Tom Chiodo: , Robin, to your point, you're right, we're two guys. Absolutely. And there aren't enough male caregivers, but there are more. Yes. Our film, we're delighted to say, as you know, there are.

Somewhere between 53 million and 105.6 million unpaid family caregivers. In, in the United States alone, there's nearly 700 million globally. Of those caregivers, the majority are women, and the majority of those women are women of color. But we have 5 million under the age of 18. Young people caring for adults, we have.

In this film, Chris addresses across the board, young caregivers, [00:07:00] caregiving for Veterans, caregiving for Children Caregiving when the issue is mental health. Uh, Alzheimer's, dementias. I've been a caregiver four times in my life, four times, starting with my mom more than 35 years ago when she was diagnosed with cancer.

I will share with you, that, um, my fourth caregiving experience in my life was with my late brother who lived in southern Florida and I live in Los Angeles, so I'm the primary healthcare proxy nearly 3000 miles away. So ifferent with my mom, different with my late eldest brother, different with other family members, but with this brother, I had to maneuver caregiving from far away, which is such a challenging, extraordinary, difficult experience.

But you learn. You learn, and you learn. When you're in crisis, you don't know what to do or who to turn to. It doesn't matter your resources. It's why, our [00:08:00] co-executive producer Bradley Cooper joined this film is because he was a caregiver for his own dad, and now he's a caregiver for his mom. 

Robin Rountree: Mm.

Well, you said caregiving from 3000 miles away. I just felt the stress for you just right here in my collarbone, that that's gotta be tough. And what is so hard and, and our organization supports caregivers to those living with a form of dementia, is that no one teaches you how to be a caregiver. And it's isolating, so you're not talking to people.

So that's like, it's always just a small victory when they finally pick up the phone and find us, you know? And then we can start giving them answers. But are you hoping the outcome of this documentary is to open up the eyes to people who haven't been a caregiver yet? And maybe political change?

I, I'll, I'll answer, 

Tom Chiodo: but I think Chris should answer it also, [00:09:00] because Chris has the filmmaker's view of what, because of what he knows and everyone he's interviewed and what the film is. And he made 18 short films as well as the long film. So he's been deeply, uh, involved in caregiving for more than a half dozen years.

From my perspective, we want people to see themselves in the film, to not feel alone, to know there's help out there. We want people to hear stories and understand. Our job is to raise awareness, is to educate, to reduce stigma and discrimination, and to change the national discourse. And we do that in every aspect of what we do in addition to the films.

, We also have a very broad, uh, national outreach education engagement campaign, not only with our PBS stations, but with our national sponsors and partners with organizations throughout the country.

We're, we're talking and one of our partners is SHRM, the HR [00:10:00] organization with 340,000 members who, who we're working with, and they're working throughout the country to develop compassionate caregiving policies for small and large companies. How wonderful it would be if we're all supported through our employers, if we need caregiving time. Where I work, we now have a caregiving policy. I can take caregiving time. If I don't use my time, I can give it to a fellow employee. That's where we're working because when you're in it, you don't know which way to turn and whether it's right in your backyard or 3000 miles away, you need help and support and resources because the life of the caregiver giver is challenged.

Your health, mental health wellbeing, your mortality can be challenged. It's a burden. It, but there's great joys and triumphs in caregiving too.

Robin Rountree: , This is so much more than just a documentary. You're, you're a force of [00:11:00] nature behind it, it sounds like .

Chris Durrance: To us, the documentary is done with a purpose. It's done to spark a thousand, thousands and thousands of conversations in local communities and states and, and nationwide.

We'll be doing premier events , , in DC and New York and LA and and a thousand interviews like this because , it's, it's the most common hidden story I think of our time. And there 

Tom Chiodo: were all over the country in Detroit, in Pittsburgh. In the Midwest, in Nebraska, in the Dakotas, uh, in Maine.

Our, our PBS stations are in hundreds of communities throughout the country, and our public radio stations also are activating. We provide station grants to some of our stations to even take it further for those that are deeply, deeply engaged in the, in the topic of caregiving in their communities. Our PBS station in [00:12:00] Detroit.

Is heavily involved in caregiving and they are PBS books and they work with 14,000 libraries around the country to do screenings and panel discussions also. So we, we are activating, our job is public service and we know that and, uh, Chris does it for, , to really leave no stone unturned in developing the content so that when you see this, you'll understand the world of caregiving in our nation.

And to your point, it's a healthcare crisis within an economic crisis. Caregivers hold up our economy, they hold up our families and we should support them. And so there are organizations that are, take this message and they do that work. They are advocacy groups and direct service providers, and they see this and they see then that the message is out there and they do what they do.

Everyone [00:13:00] has a different approach. Large corporations may engage with this film so that their thousands and thousands of employees will know about it and then they can engage with their employees. Others, it's for other purposes, for particularly foundations that work in the space or that there's groups that work to change regulations.

That is their work that they do independently. 

Robin Rountree: So you have a little star power in getting Bradley Cooper. Few people have heard of him, uh, as an executive producer, had you started the project and then brought him in. 

Tom Chiodo: Well, we started from scratch, in terms of creating the project and, Bradley came in very early on in the project.

Then of course, it was between Chris and Bradley. About Bradley's story being in the film, being an executive producer, we brought him in at the very beginning because he wanted to [00:14:00] do something in that space. 'cause he had been a caregiver and he understands that it doesn't matter who you are, where you're from, that this is a common issue amongst so many people.

And so he wanted to do something and we partnered together to create the project. And then beyond that, Bradley's story is in the film, and that was Chris's determination on how that story fit, , to tell his about being a male caregiver. 

Chris Durrance: . Yeah. I wanted to say just a couple of things as well that that will give your listeners a sense of, of the ambitions of the project.

It's, it's not just the screenings and, , the events that we'll be doing all around the country. Um, we're also working with teachers and colleges. We put out a huge amount of material for schools. One of the shorts is actually about one of the school districts that takes the time to ask how many students are involved in caregiving to find out how it's [00:15:00] impacting their ability to graduate.

If more school districts did that, I feel like we'd all be, we'd all be better off. The, another thing that that really struck us is the importance of social media here. Uh, and we see that in the film, you said rightly how isolating the experience can be. And I think the advent of social media has really helped so many caregivers find communities, find solace, find practical advice,, even from across the country, and has really helped them with their, mental health, their ability to cope, their ability to find humor and joy in, in what they're doing.

And so we try and cover the, the kaleidoscope that is the caregiving story in America today. 

Robin Rountree: That's amazing. I know myself on my caregiving journey with my mother, , I was able to find so much support on Facebook in a, in a closed group where we could just vent and, and not be judged. So it, yeah, you gotta [00:16:00] find some support no matter where you find it.

And hey, if it's on social media, that's great. . A little star power for you in your past. Chris. Um, you're the director of the film and you have worked with Ken Burns.. What did he teach you as, as a documentarian? 

Chris Durrance: It's interesting, and I'm glad you brought this up because for Ken himself, one of the, origins of, in some ways his filmmaking, his storytelling career is his relationship with his mother.

He lost her when he was nine, 10 years old to cancer. Um, and. I would imagine he was involved somewhat. He was a little young, but I would imagine he was involved somewhat in the care, but it certainly impacted him and, and the rest of his life. And I think his, the way he describes it, his, delving into the, highways and also the byways of American history of the American story is in some sense a, a desire to bring her back, back to [00:17:00] life. 

And so we worked together with Tom on, , a big series on cancer. And that experience was very much,, alive and present for all of us working on that project. We then worked on another project about, called The Gene, largely about rare genetic diseases.

And these two films is what spawned PBS's interest in doing wellbeings, in doing this ongoing series of films on health and and wellness because they realized there was , such a profound interest across the country in towns, small and large, rural areas, in urban environments to grapple with these issues.

It impacts all of us, and yet they're barely talked about. 

Tom Chiodo: And I'd add 

One of the favorite, uh, many favorite things that I've heard them say, but that I've learned from, he was talking to a young group of students, um, once about youth [00:18:00] mental health and he said, you know, none of us are getting out of here alive.

It's what you decide to do with your time here, which is wonderful because with, when it comes to caregiving, you don't know what your best time on earth is, what the best time Robin was between you and your mom could have been one of her last days on this earth. And I think when we seek, uh, to understand that and, joyously become a caregiver for seeing in some aspects of cultures within our society, it's given that you care for people that are, uh, elderly of another generation.

And in some aspects of our society, we're so damn busy. We don't do that. Well, it, I think maybe we don't realize what we're missing by not doing that. When we do do that, we realize it's a gift. It's a gift that you'll never regret. It's a gift of relationship. I always say humans are our kind [00:19:00] and they are.

We need to relate even more and take on the tough stuff because through the tough stuff, we find great joy and caregiving is, I mean. What, what is it? 10,000 baby boomers, uh, a day or leaving in the workforce, or turn 65 every day. 

Robin Rountree: Yeah. And it's, uh, it's crazy that, you know, the baby boomers are gonna need this care and do we have the population to support them?

And it's, , it's a lot coming at, you know, the senior tsunami is something I've heard coming around because of the baby boomers. So it, yeah, it's a lot. It isn't just a tough job with so many joys. Um, completely transformed my life. But we do have to teach our, our dementia caregivers. You gotta, when you, those moments of joy come along, you hold onto them and you celebrate them because sometimes you days at a stretch before you get one of those.

So yeah, it's, uh, it's so much. [00:20:00] And I was just wondering. So many of us are impacted from being a caregiver or having someone give care to us, but when you were working, maybe was there a, a camera man or someone behind the scenes that didn't have the experience, and could you see the impact that the stories made on that person?

Chris Durrance: Absolutely. I would say what was actually, what was astonishing to me was how in the teams working on almost at, at almost every shoot. So we may have 4, 5, 6, 10 people working behind the scenes on a shoot. Almost invariably people had a story, a brother, a sister, a parent, a child. The exceptions were those who didn't have those experiences, and even then everyone else would say "yet".

You don't have that experience yet. Yes. So to, to me it was, it was confirmation as if needed that behind every door, when we drive down a street, [00:21:00] wherever we are in this country, wherever we are, frankly, in this world, there is care. There is care going on. And what we wanted to do with this is bring those untold stories out into the daylight to make people not feel alone, empower people to share their stories.

And we've built, a story wall. We call it where people can share their own stories and create, , a, a community to the extent that's, that's helpful for them and already the response is astonishing.

Tom Chiodo: Yes, 

Robin Rountree: that is incredible. People 

Tom Chiodo: can go to wellbeings.org. Um, share their personal story, their videos, messages on the We Are Wellbeing story wall. We had tens of thousands of young people do it during our youth mental health project over several years. Um, and now we're doing it for caregiving and, there's so many stories that people can read about others' experiences, but it, we want people to share their own.

Robin Rountree: . So that if you wanna submit your [00:22:00] own story, it's , wellbeings.org, correct? Yes. Plural. 

Tom Chiodo: wellbeings.org. 

Okay. That'll be in the show notes.

Chris Durrance: Can I, can I say one more thing, Robin as well?

Yeah. Which is that these, these stories are so important to, to Tom and to me and so many others,, who are working for this. And we'd also, uh, really like your viewers to know that one of the next projects that we're working on. Is squarely on dementia, and we see these as a sister project. So much of caregiving, as you will know yourself, is related to Alzheimer's and other dementias And, so much of dementia, so much of the dementia story concerns caregiving. Yeah. The overlap is enormous. And so our next series, together is, is on dementia and it's just starting, but the, the new hope, this new era of hope that we're entering into, thanks to progress in early diagnostics, thanks to some treatments.

. And we are really excited and [00:23:00] looking forward to, to bringing that story to viewers too. 

Robin Rountree: We cannot wait to see that. And, , we are supporting you 100% with anything you need. Wonderful, wonderful. . Well, gentlemen, thank you so much for the time today. Really appreciate you being on Informed Aging and enjoy the rest of your day.

Chris Durrance: Thank you, Robin. Thank you. Such a pleasure being with you. All the best.

Robin Rountree: Please make sure to subscribe to our podcast Informed Aging, tell your family and friends about us as well. If you'd like to support the work that we do with the Alzheimer's and Dementia Resource Center, please go to adrc cares.org/donate. You can find us at facebook.com/informed Aging.

Today's episode was recorded at ARC's Podcast Studio. That's all for now. We are looking forward to our next visit.

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