PBS Highlights: Chris Durrance's Insightful Look at Caregiving

Caregiving Challenges and Solutions in The Villages: An Open Forum in The Villages Florida Exclusive Interview PBS Film Maker Chris Durrance

In this episode of the Open Forum in The Villages, Florida, host Mike Roth interviews Chris Durance, a film producer with extensive experience in caregiving-related projects. They discuss Chris's latest film on caregiving, which will air on PBS. The conversation covers the challenges faced by family caregivers, particularly in communities like The Villages, and highlights the importance of understanding caregiving through various perspectives. Chris emphasizes the need for broader societal recognition of care-giving issues and the role of community support in addressing these challenges. The episode also features Alzheimer's tips from Dr. Craig Curtis and encourages listeners to share their caregiving stories online to build a supportive community.

Here's the Caregiving Share Your Story link Chris mentioned, where people can see Bradley Cooper and others -- and share their own stories.

https://wellbeings.org/#join-the-conversation

You can see this episode on YouTube: https://youtu.be/9yIl15dOVpI

Chris Durrance email address: cdurrance1@gmail.com

CHAPTERS
00:00 Welcome to Open Forum in The Villages
00:58 Support the Podcast
01:39 Introduction to Chris Durance
01:59 Chris Durance's Filmmaking Journey
03:30 Challenges and Stories of Caregiving
04:22 Caregiving Statistics and Insights
05:25 Community Support and Resources
06:04 Impact on Younger Caregivers
07:33 Hidden Caregivers and Family Struggles
09:26 The Kaleidoscope of Caregiving Experiences
12:42 PBS Film and Community Engagement
15:54 The Importance of Music and Creativity
17:15 Final Thoughts and Future Plans
24:55 Closing Remarks and Listener Engagement

Transcript

PBS Highlights: Chris Durrance's Insightful Look at Caregiving

[00:00:00] Emily (2): Welcome to the Open Forum in the Villages, Florida. In this show, we talk to leaders of clubs and interesting folks who live here in the Villages. To get perspectives of what is happening here in the Villages Florida, we are a listener supported podcast. There will be shout outs for supporters in episodes.

[00:00:25] Mike Roth: This is Mike Roth. Listeners, I'm thrilled to share with you this podcast, which is my passion project for you. This podcast brings you knowledge, inspiration, and a lot of things that people need to know about the villages and the people living here. Be sure to hit the follow button to get the newest episode each week.

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[00:01:39] Mike: This is Mike Roth on Open Forum in The Villages. 

Florida I'm here today with Chris Durance. Thanks for joining me. Chris.

[00:01:44] Chris Durrance: Good morning. It's great to be with you.

[00:01:46] Mike: Did you write the movie? 

[00:01:47] Chris Durrance: I made the film. everything you'll see on screen is, a team effort, but yes I am the producer of the film.

[00:01:53] Mike: You're the second or third producer of a film that we've had on Open Forum in The Villages. Chris, many films have you worked on before you got to this film on caregiving?

[00:02:05] Chris Durrance: Probably two dozen, something like that. I don't actually keep track of each individual one. I don't keep track of the total. I think of them as families of films. this series on caregiving is my third film in the health and wellness space. I did a big series on cancer. I did a big series on genetics, which is about rare genetic diseases and the advances in understanding, tracking, diagnosing, and treating rare diseases, which has been really exciting.

The progress in cancer, also astonishing in the last few years.

[00:02:39] Mike Roth: Yes, it has been.

[00:02:39] Chris Durrance: Then this film on caregiving and I'm shortly gonna be starting a big series on dementia, on Alzheimer's, Lewy bodies, Parkinson's, ALS. 

[00:02:49] Mike: Brain

Are, quite crippling in their later

[00:02:52] Chris Durrance: Yeah,

there's a lot of advances being made and if we continue to invest in research, whether it's at the federal level, the state level, or through philanthropies and private companies, we have a opportunity to really make a difference for these neurological conditions.

it's a really exciting moment. It will take time, but it's an exciting moment. We're on the cusp of something special in that space.

[00:03:16] Mike: I certainly hope you're right. I see too much of it around here in The Villages where we

[00:03:20] Chris Durrance: Yeah.

[00:03:21] Mike: People who are in obvious early stages of Alzheimer's or dementia. It's very difficult for the families.

[00:03:29] Chris Durrance: Yeah.

[00:03:30] Mike: When you put together your film on caregiving, were there any stories that were particularly affecting you or you met people that you really enjoyed being with?

[00:03:40] Chris Durrance: Absolutely, and thank you for asking about that caregiving affects tens of millions of families. The data on caregiving is not great. That's something that we should be paying more attention to. what we do know from surveys is that between about 53 million and about 105 million people are family caregivers

[00:04:01] Mike: How do you get

[00:04:02] Chris Durrance: That is a huge number. like with all data, you get it through surveys, so there's not a census question on this, but you get it through surveys what's been asked to date generally is are you a caregiver? And then we get a sense of the numbers of caregivers. But as many of your friends and colleagues in The Villages will know 

Many people don't self-identify as caregivers. They just look after a loved one, a grandchild, or a sibling because that person is in need. They may do it for 20, 30 hours a week, but they don't call themselves a caregiver. So more recently people have started saying.

Asking the question in a different way. do you help someone buy food? do you help someone dress Do you help someone prepare their meals? Do you help someone go to doctor's appointments?

How many hours a week do you do it?

if you check all these boxes, then whether you call yourself a caregiver or not, you are a caregiver.

[00:04:57] Mike: Okay, so there are

[00:04:59] Chris Durrance: So there are some nonprofits that do surveys because they're interested in doing this, and more school districts, more states more than the federal government should be asking this question.

Because only when we wrap our hounds around the scale of the challenge facing the American family, in particular, the sandwich generation. And the elderly. We know we have an aging population, which means there are a lot of elderly caring for other elderly people.

[00:05:25] Mike: And we see

Day here in The Villages. 

[00:05:27] Chris Durrance: Absolutely.

[00:05:27] Mike: Two organizations, that have a program, a two hour, three hour program each week for that caregiver. They can drop off their loved ones at a program at one of the rec centers, and, the people there will take care of 'em while the caregiver gets a couple of hours off or half a day off. But that's really tough. accounting for all the people who are giving care or needing care seems to be, the first step to get a good count of how many people are actually in care.

[00:05:57] Chris Durrance: Absolutely, and this is gonna be less relevant for people in The Villages but for all their families, this will be impactful. there are a few school districts. Rhode Island is one where they ask, in the schools, how many students are caregiving. when they ask that question, they find that sometimes as many as 40% of their school children.

Our caregiving and what that means is they're late for school because they have to take a younger sibling to the bus stop and can't leave until the bus comes, or they have to leave school early to take a parent or a grandparent to a doctor's appointment.

40%. It's an astonishing number 

And why do I bring that up? Because what they're doing is they're being taught as failing students because they're late, because they cut out early because maybe they can't finish their homework on time in.

fact, really they're the model students. They're the ideal students. They're people who we should be supporting and encouraging because they're the ones Who are enabling their families to thrive and survive. asking that simple question, whether it's of young people, whether it's of elder people, I think would just help us understand the scale of the challenge and then start taking us towards the solutions that you so rightly brought up

[00:07:12] Mike: Yeah,

[00:07:12] Chris Durrance: on in this conversation.

[00:07:14] Mike: Solutions are very difficult. In one of my friend's cases he became very difficult to deal with. His wife moved out and he wouldn't divorce her. It's just amazing what people are doing. And then he wound up in memory care himself for a couple and he seemed to have gotten better one of his daughters took him in for a year and he died before the end of that first year. But I think it's the hidden caregivers that you were trying to talk about in your film. Am I right.

[00:07:40] Chris Durrance: Absolutely. And I think it can be such a rewarding experience. But what we see in the film is it can also be such an isolating experience. So many people, you think of the daughter of your friend, she probably felt like she had no support. She was probably living in a home, bringing up kids, living in a home where that was not designed.

[00:08:00] Mike: it would've been an impossible situation 

[00:08:03] Chris Durrance: Yeah. 

[00:08:03] Mike: So they made it work for the year. But even for the two years he was in the memory care unit, was difficult for them. Okay.

[00:08:11] Chris Durrance: Absolutely.

[00:08:12] Mike: He

[00:08:12] Chris Durrance: So many families are going through that and often this is thrust upon them, suddenly has someone has a fall, you suddenly realize that someone Is unable to form sentences properly becoming an unsafe driver.

These important decisions about withholding car keys control of bank accounts, about where someone lives, about how someone stays safe, doesn't wander off unattended. All of these things suddenly fall on the family and they're not ready for it because we haven't had these conversations about care.

How to prepare oneself, how to prepare the whole family for it. Does someone have to move? is the parent gonna move in with the person? If you have young kids, it may be scary if someone comes in and they're occasionally combative.

So all of these things I think would benefit from us being more open as a society to talking about these issues rather than having to face them in moments of crisis. 

[00:09:05] Mike: And

[00:09:05] Chris Durrance: late in life.

[00:09:06] Mike: people make decisions.

[00:09:08] Chris Durrance: Absolutely.

[00:09:09] Mike: And the other side of the coin we. Americans, we don't really have a training program to become the caregiver for your mom or dad, sister or brother, or whatever the case may be, son or daughter. And it just happens in a snap. 

[00:09:25] Chris Durrance: Can

[00:09:26] Mike: you.

[00:09:26] Chris Durrance: What we're trying to show in the film is a kaleidoscope, really a kaleidoscope of experiences.

A husband, there's a husband caring for his wife who had a stroke. A woman who has a kid who's born with a disability, there's a woman caring for her dad who has Alzheimer's. The story of the school district finding that 40%, nearly half their kids are spending hours a week with caregiving responsibilities.

So we show all of these different stories. The other thing that we do that I'm really excited for people to see is that we also tell the story of how we got here. We start with the Great Depression, and we come through to the present day, and we see that in World War ii, in Vietnam, in the eighties and nineties, there are all sorts of policy choices that have been made.

That have consequences. Consequences, real consequences for families. And so when you get hit, often unintended consequences. So when the family has that crisis moment and is scrambling to figure out which way is up and how to look after their loved one. you don't have a sense of why you are here, why it's so hard to navigate the city, the state, the federal, like Medicare, Medicaid, all of these different systems.

Respite care. Can I get an hour a week of this? Can I get two hours a week of that? How do I pay for this? How do I manage that? How do I keep them safe? That this is a product of choices that have been made over the years. Often, like you said, unintended consequences of choices And so that's the other thing that we tried to do in the films.

Show a kaleidoscope of lived experience, but also the journey of how we got here.

[00:11:04] Mike: Good. Let's take a short break here and listen to a Alzheimer's tip Very appropriate today from Dr. Craig Curtis.

Dr. Curtis, what can someone do if they know that they have Alzheimer's that runs in their family? 

[00:11:25] Dr. Craig Curtis: So there's a lot that they can do. So published actually in the Journal of the American Medical Association in February of 2024. So this month this was a study done primarily at Rush University in Chicago.

Looking at those with brain amyloid. So those people that already have amyloid can a healthy lifestyle protect them from developing dementia? And the answer was yes, by following these five healthy habits that were tracked and those were, they did not smoke. They did moderate exercise for at least 150 minutes a week.

They kept their alcohol consumption low. . And they used autopsies. They actually used approximately 530 autopsies to prove that those that followed those healthy lifestyle habits or had those healthy lifestyle habits. Actually had less amyloid. It correlated those had less amyloid in their brain.

[00:12:20] Warren: With over 20 years of experience studying brain health, Dr. Curtis's goal is to educate the village's community on how to live a longer, healthier life. To learn more, visit his website, craigcurtismd.com, or call 3 5 2 5 0 0 5 2 5 2 to attend a free seminar.

[00:12:36] Mike: Thank you, Dr. Curtis. I'm back with Chris Durrance we're talking about Caregiving. is there something particular that you want the viewers of your film, which is actually gonna be on PBS?

[00:12:48] Chris Durrance: Be on PBS. it's gonna be streaming on PBS from May 27th. through your local station, and then broadcast from June 24th, so you can stream it online on pbs.org from May 27th, and you can watch it on your TVs on PBS from June 24th.

right now there are some short films that you can already see.

go to wellbeings.org/caregiving. Mike, maybe you can put that in the show notes. the other thing I wanna say is that we are not just putting a film out there for people to watch passively.

We are building a community of voices around. this important issue and what viewers of your podcast can do is they can go to share your story caregiving, share their own, upload their own stories. They'll see Bradley Cooper, the actor has put a story out there and many others, why do I say this? Because I think in that we've talked about how the caregiving experience can often be though rewarding, also very isolating. One of the ways we see in the film that people have been able to cope to find ways of getting through this experience is by sharing their stories online, is by finding an online community.

So when their loved one is resting, when they're out of the house, when they have a moment of respite, then without leaving their home, they can, on their phone or on their computer, on their tablet, be a part of an online community. And we see how important that is. So your viewers can share their own stories?

[00:14:19] Mike: Is there an online community now? 

[00:14:21] Chris Durrance: Yeah. 

[00:14:22] Mike: what would one

[00:14:23] Chris Durrance: Wellbeings. If you go to, wellbeings.org slash caregiving and I will send you the link, Mike, so that you can put it 

[00:14:30] Mike: I'll

[00:14:31] Chris Durrance: in your show notes.

[00:14:32] Mike: the, show

[00:14:33] Chris Durrance: Yeah. But it's called Share Your Story and it's a really wonderful way of building community, finding community and spreading the conversation.

That's why I'm speaking with you all here today. And I want to hear from your listeners too, about the impact of this story on them.

[00:14:51] Mike: On our homepage for the podcast in the center just below SHOW NOTES, there is a Send us a text button where you can, send us a message if any messages come, they're relative to you, Chris. We'll put 'em through you. 

[00:15:05] Chris Durrance: Wonderful.

[00:15:05] Mike: The film on PBS. Is going to be put out here in June How long will it stay available? If someone is listening to this in late 26, let's say, will someone,

[00:15:17] Chris Durrance: I think it's up for three or four years, depending on the local PBS station, they will rebroadcast it. You have to check your local listings. for those who are computer savvy, You can get it on pbs.org And watch it online at your convenience. there's a two hour film and 18 short films about caregiving as well. there's a whole load of material. It's such an important topic and we felt that just one film wasn't enough.

And so we spent a lot of time putting together other stories. We've done stories about a dementia choir, stories about school, stories about a church called Worshiping Together. Dementia Choir in St. Paul.

Music is the most wonderful source of comfort care and community I highly encourage people in The Villages to get involved in some kind of singing if they can. one of the most remarkable things happens, with a choir director who runs a chorus in New York for carers of people with dementia.

we often think that people are remembering songs from their childhood,

[00:16:24] Mike: I've

[00:16:24] Chris Durrance: and that's true.

[00:16:25] Mike: I've seen that.

[00:16:26] Chris Durrance: What's even more remarkable is that people who have quite advanced dementias can also learn new songs. There is something so profound about the way that music and our brains function.

The way that they enable us to communicate to find solace. And to find community People who couldn't have a conversation can learn new songs. It really is special. So we have a wonderful short film about the dementia chorus. 

[00:16:58] Mike: How long have you been working on this project? 

[00:17:01] Chris Durrance: I've been working on the caregiving project for about three years now.

[00:17:05] Mike: Okay, 

[00:17:05] Chris Durrance: Spending time traveling across the country, meeting families, understanding the history, doing interviews, pulling it all together. I'm so excited for people to see it.

[00:17:15] Mike: What was your favorite part of working on this caregiving project?

[00:17:19] Chris Durrance: That is such a tough question because I met dozens if not hundreds of people going through the pandemic. I worked in it full time for the last year and then on and off for another few years in total, about three.

But I started before the pandemic. Thinking about it, working on it, conceiving it, and it's just unfair to pick any one particular moment. I think the thing I'm proudest of is that we've taken a story that is hiding in plain sight, a story that is everywhere, a story that impacts every family in such a way that most people don't even think about it.

[00:17:56] Mike: It is a

[00:17:57] Chris Durrance: And it's the quintessential, hidden story. It's a story that needs to be told. no one has done it in the way, that PBS is doing it, which is not only to put it out there, but to. Use it as a vehicle to raise awareness, bring people together and change the conversation around caregiving.

I think of it as filmmaking with a purpose, and I couldn't be prouder of it.

[00:18:20] Mike: That's good purpose. Aside from the private caregivers provide, respite care for the families, non-medical, naturally, and I see some of that here in The Villages. Until I actually got involved with these Alzheimer's research studies I didn't realize that there was any of it going on here in The Villages. 

[00:18:41] Chris Durrance: Yeah.

[00:18:41] Mike: to find there were at least four different companies providing that, before we even talk about the franchises. the number of people in care is surprising and they go through different stages. I also run the Improvisational Theater Club here in The Villages,

[00:18:55] Chris Durrance: What a great project. 

[00:18:57] Mike: yeah one of our players had a son who was 54 years of age and, had brain cancer. And got around in a walker, and so he was living here with his mom, we put him into improv and he was one of my better players

[00:19:11] Chris Durrance: That's fantastic.

[00:19:13] Mike: I asked for a volunteer, hand would shoot up real fast. 

[00:19:17] Chris Durrance: Kind of creativity and community building around improvisation. We talked about singing before making art, painting. All of that is so important for people and particularly people with neurological conditions. I'm so excited to hear that you're doing that.

[00:19:34] Mike: Yeah, we have a guy who's about 34 years old in the group who's got some developmental problems. I was questioning whether or not he would do well, he's done exceptionally well because he puts together some very funny closing lines for scenes. He has capabilities beyond what I thought someone would have, and it's very good to see that. But there are others that become shut in cases and you don't know about 'em. 

[00:20:01] Chris Durrance: But even there, I would not be surprised to hear from their carers Who know them best that they may be calmer happier or more comfortable and express in ways other than words, their excitement about being present. every week we reach people in so many different ways.

if I think of a lesson I've learned from going through this experience of making the caregiving film. Is that we need to just meet people where they are and that's so important. care can take so many different forms. And we need to be open to that.

[00:20:34] Mike: There are various levels of care that people need and the family provide so much. Okay. I. time, the family might not be capable of providing as much as they did at the very beginning. So I think we have to have a different solution here in America for caregiving. 

[00:20:53] Chris Durrance: It's a huge burden on families. They're often being asked to give people medications to roll them in bed so they don't get bed sores to keep their mind stimulated. carers are doing the work of highly trained professionals, often while having to bring up their own families while holding down a full-time job with an employer that may not be that aware or sympathetic 

The other things that they're doing in their lives. And they may be doing this on two or three hours sleep a night because the person they're caring for is not able to get a full night of sleep. So the burden we're putting on families is immense. I think the first thing to do is to take this story out into the open, share it, bring people together and start a conversation about caring America.

[00:21:41] Mike: What kind of reception have you gotten from? Other PBS stations around the country to the film.

[00:21:46] Chris Durrance: So the film is gonna be on, in all 350 plus stations on June 24th, and streaming on pbs.org from May 27th. And we, the other thing we did is to spark conversations across the country. Is that we put out a call for proposals for stations to. Come up with activities around the film.

about 30 to 40 stations submitted ideas. we've seeded events around the country, with stations, large and small, rural and urban to do activities around the caregiving project. So the response has been, we're recording this in late April, I think you're putting this out in May.

So we're still a month. Before the public will get to see this film, and yet the response has already been overwhelming. I've never experienced anything like this. I think people are crying out for information about this.

[00:22:44] Mike: I fully understand why it's been hidden. there are very few resources, or public information that's around, and I'm really

[00:22:53] Chris Durrance: Yeah.

[00:22:53] Mike: you've done this film.

[00:22:55] Chris Durrance: Yeah.

[00:22:56] Mike: what is the follow on that you're thinking you might want to do beyond the airing of the film? 

[00:23:00] Chris Durrance: The film will come out in June and we have a range of events and activities planned to follow up through at least the rest of the year. We have about 30 sponsors and partners on this project, nonprofits, corporations, other groups, philanthropies, and we're working with all of them to plan events and keep the conversation going.

I think for most viewers, when they think of TV they'll think of Netflix or Apple, something comes on their homepage and they may watch it, and then two days later it's gone. 

[00:23:35] Mike: Yeah.

[00:23:36] Chris Durrance: What we're doing at PBS is the opposite for us, that launch on TV at the end of June, that's the beginning of the journey for this film, not the end we want this film to take off and reach households across the country. that's why we're working with so many partners, so many sponsors. That's why I'm doing interviews all over the country. I was on a panel in Alabama recently, one in Philadelphia. I'm off to, Virginia, soon.

We're doing what we can to take this film out and use it to spark. Thousands of conversations in communities, large and small across the country.

[00:24:11] Mike: Yeah. Florida, I must have hundreds if not thousands

[00:24:14] Chris Durrance: Yeah.

[00:24:14] Mike: Senior communities where you have a 55-year-old gate to get in. And all about people aging. And people have different infirmities, which can cause to be a caregiving. A patient or a caregiver themselves that they were, was unplanned. Think there's a story that people need to hear I want to thank you for being with us today. Chris, is there anything else you want to add?

[00:24:40] Chris Durrance: No, this has been a great conversation. I'm excited for your viewers to see the film and encourage any of them to reach out if they have other questions or ideas on how to take the conversation even further. thank you. I really appreciate the chance to speak with you.

[00:24:54] Mike: Thanks, 

[00:24:55] Emily: Remember, our next episode will be released next Friday at 9:00 AM. Should you wanna become a major supporter of the show or have questions, please contact us at mike@rothvoice.com. This is a shout out for supporters, Tweet Coleman, Ed Williams, Duane Roemmich, Paul Sorgen and Dr. Craig Curtis at K 2 in the Villages.

We will be hearing more from Dr. Curtis with short Alzheimer's tips each week. If you know someone who should be on the show, contact us at mike@rothvoice.com. The way our show grows is with your help. Text your friends about this show. If you enjoyed listening or just tell your friends about the show. We thank everyone for listening to the show.

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