Actress Yvette Nicole Brown Discusses the Caregiving Journey

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is the Brain & Life Podcast. Daniel, I so admire how much you love to be active with running and cooking. I always learn so much from you, you're traveling. But do you sometimes just have to be chill, sometimes be a couch potato, stream your favorite series or watch your favorite TV show?

Dr. Correa:
It's funny, I laugh about, thinking about it as you were saying. My wife would often say I'm nearly always on the move, but I can definitely rock the couch to nap, put my feet up, get some rest, stream movies and shows, often together with her. I enjoy everything from silly shows to documentaries, sports, independent movies and dramas.

Dr. Peters:
I just finished watching The White Lotus with my husband and now we're watching Running Point. Now, my husband and I do like to binge watch together when we can find something that we both enjoy. Sometimes I like different shows. I do like those, I guess those true crime shows. He doesn't care for that as much, but my husband interestingly loves to watch shows on repeat, so he can see Arrested Development like over and over and over and over again. I can't do that.

Dr. Correa:
Yeah, no. It's funny that, as you mentioned that sort of challenge of something everyone in the family or you and your partner both enjoy. Marin and I, we enjoyed White Lotus together and I'll have to admit, most of the time we don't rewatch a whole lot of things, but during some of the most stressful times of the last few years, we decided back then to start rewatching Friends from the beginning as a fallback whenever we needed something silly and approachable or just some soothing laughs at the end of the night. And yeah, a few weeks ago we finished Friends from the beginning. I think having-

Dr. Peters:
I'm quite impressed.

Dr. Correa:
I know. And it was great. I mean it was brought back memories of different times in the past and a whole different nineties era, and it's funny how many of those episodes sometimes we kind of basically knew the lines already. And I think having those activities that you can do together with a loved one and laugh together are so key.

Dr. Peters:
I love the thing about the jam, I love that, in Friends, or pivot, pivot. It's got into our lexicon. In so much of our shows we feel like we know the people in the shows and the reason why I started to bring up, I guess TV or series is because today we're joined by Emmy nominated actress Yvette Nicole Brown. She was a series regular in the hit show Community.

Dr. Correa:
Oh, my wife loved that show.

Dr. Peters:
Yeah, it's a great show and I just love the premise of it too. You going to community college. But she's also a writer, a producer, a host, and a podcaster in her own right. Her seven part series podcast Squeezed highlights her caregiving journey with her father with Alzheimer's disease. And something that we've discussed in the Brain & Life Magazine and on the podcast are the challenges of the sandwich generation, sort of feeling squeezed as adults who are simultaneously caring for their aging parents and their own children.
So yeah, I think this interview is very refreshing and enlightening conversation with Yvette. We discuss the challenges with caregiving for loved ones with Alzheimer's disease and how that caregiving dynamic can change over time. So I hope everyone enjoys it.
Hello everyone from the Brain & Life Podcast. As always, I am your co-host, Dr. Katy Peters, and I'm delighted to welcome Yvette Nicole Brown to the podcast. Now, of course you know her as the Emmy nominated actress, writer, producer, host, and she's best known for her roles, I'm sure you've seen her on Community, The Mayor, Drake & Josh, The Odd Couple, also Disney Plus's Big Shot. She's been on the big screen also in Dreamgirls, Tropic Thunder, one of my favorite movies, I love Tropic Thunder, and also Disney's Disenchanted. And she's been a co-host on The View, The Talk and The Real and Access Hollywood. She also has had her own podcast, I believe it was released last year, she's going to have to fill me in on that, called Squeezed and it was about her caregiver journey in regards to her father who has Alzheimer's dementia. So she's coming to talk to us today on the podcast. So Yvette, welcome to the Brain & Life Podcast.

Yvette Nicole Brown:
Oh my God, thank you for having me. That was a wonderful introduction. Thank you.

Dr. Peters:
Well, before we get started, how about you tell us where you're joining us from today?

Yvette Nicole Brown:
I'm in LA. I've lived in LA for about 30 years. I'm originally from Cleveland, but I'm in LA right now.

Dr. Peters:
Great. Is it a beautiful day there?

Yvette Nicole Brown:
It is a beautiful day. I am a bit of an introvert and a homebody, so the only reason I know for sure it's a good day is because my friend who helps me with my garden is out there tending to the garden, so I went out to say hello to him. That's how I know it's sunny. Otherwise, I would have no idea.

Dr. Peters:
And we just both talked about how much we love our gardening and our vegetables and our fruits. Can you tell us a little more about yourself? You've been in all facets of, I guess film, from acting to producing, so tell us about yourself.

Yvette Nicole Brown:
I'm a kid of East Cleveland, as I said. I love music, I started out as a singer. Segued over into doing commercials and then that turned into sitcoms and dramas and movies and voiceover and just did a little stint on a Broadway workshop for a show that just opened called Smash. So I feel like at this point I've dipped a toe in just about every part of entertainment. Voiceover is one of my favorites. I also love podcasting, but again, those two things are using a microphone primarily, and that's where I started as a singer. So I feel very comfortable doing things that involve recording. So that's me in a nutshell. Just happy to be a working actress all these years later

Dr. Peters:
And a working podcaster. So what are your, thinking about filmmaking, what are sort of your favorite things about filmmaking?

Yvette Nicole Brown:
About filmmaking? I love that it takes time. Commercials where I started as an actor are very fast moving, sitcoms are very fast moving, but films and dramas take time, especially films. Films will spend two weeks on a minute that will air on screen if it needs that level of detail. And so I really do love that, where you can really settle in and get to know a character and really create something really special.

Dr. Peters:
What do you think about the portrayal of medical problems maybe in film or even caregivers or people that have a medical illness?

Yvette Nicole Brown:
How they're depicted?

Dr. Peters:
Yeah, how do you feel that they do with the depiction of those conditions?

Yvette Nicole Brown:
I think we're getting better. I'm a part of a great organization called The Creative Coalition, and their job is to remind filmmakers and television production companies about different things. They've done an initiative on obesity, they've done an initiative on mental health, they've done an initiative on Alzheimer's. I was the head of that commission for Alzheimer's, and their goal is to encourage television and film to include stories about different things that affect people.
And so I think when you have more people advocating for different illnesses and situations, you get a better depiction of them. There's a show right now called The Pitt, stars Noah Wyle, which is a brilliant show. Every episode is just an hour of time in this ER and they literally, I've heard that medical people see that show as the clearest depiction of what their lives are like, and there was a really beautiful Alzheimer's arc, caregiving and Alzheimer's arc that lasted I think maybe two and a half episodes. These characters were in two or three episodes.
And I felt like it was so real talking about caregiver burnout and the sacrifices that caregivers make and how they don't take care of themselves, they just are so focused on their caregivee as they should be, but it also depicted the toll that it takes on the caregiver and the caregivee when they don't find a way to take care of themselves as well. So I think that we're getting better. I think when you have more people that are experiencing the illnesses and the disorders as part of the creative process, I think the better the depictions will be.

Dr. Peters:
And I agree with you because I feel like it needs to be reflected in the things that we put out there, that the situation that caregiving can also be... it's a journey from the start of the diagnosis, through the diagnosis, and then I would say when they're at their end of life and then also the grieving stage. So it isn't just one snapshot, it needs to be across a continuum.

Yvette Nicole Brown:
I agree.

Dr. Peters:
So you really focused in on this with your podcast, Squeezed. I like the name. I like the name a lot. Tell us about the podcast and what really inspired you.

Yvette Nicole Brown:
We chose the word Squeezed because it depicts what most caregivers are going through, especially those in my age group. Most of the people in their late forties, early fifties are caring for children and caring for their elder relatives. And so they're basically squeezed, they were called the sandwich generation. We refer to them as squeezed because they're getting it from both sides.
And it doesn't necessarily have to be your own kids. There's a lot of people that are, you might be a teacher and also caring for your adult parents or older family members, and that is the feeling of being squeezed because if you're a teacher, your job doesn't just end at the end of the day, you're worried about those babies all the time. I'm a godparent, I'm worried about my 19-year-old goddaughter that I helped raise as I care for my dad. So it's all of those different concerns.
And so we tried with Squeezed, which I'm very proud of, I think we succeeded. We wanted to make a docu podcast. We wanted it to be a documentary that you listen to. So as I'm describing the life of a single father of triplets in New York who's trying to raise them on a... he's self-employed, how does he do that? You can hear the kids in the background arguing or playing with each other or doing their homework. You can hear him walking one of his triplets to school in the morning and you can hear the sounds of New York around them as they walk. So as you're listening to the show, you can almost open your mind's eye and see their lives unfold and you get to enjoy the triumphs and the despair of life. And it's a life that we all lead. I tell people all the time before we leave here, we'll either be a caregiver or a caregivee. Nobody escapes it.

Dr. Peters:
I agree.

Yvette Nicole Brown:
So that means we need to have more projects, podcasts, television shows, movies, cartoons, whatever, books that deal with what we're all going to be dealing with so that it's less daunting when it's our turn on either side.

Dr. Peters:
And I think you need to bring the caregiver to the table and to the forefront. I mean, as a clinician, I think it's very important. Of course, I focus on the patient, focus on the patient first, but then turn to the caregiver and give them an opportunity to share with me what they need to convey in that visit and at that moment. And it's going to change from visit to visit.

Yvette Nicole Brown:
Absolutely.

Dr. Peters:
And for me as a professional to be prepared for it. Now, you alluded to your father who has Alzheimer's. Can you tell us a little bit about him and what he's going through?

Yvette Nicole Brown:
Yeah. He was early diagnosed. I think he was 70 or 71 when he got the diagnosis and he was just coming up on retirement at his job and he fought the diagnosis. He wasn't diagnosed with Alzheimer's until I got him here from Ohio to live with me. That's when he got a proper diagnosis. But he had been having dementia and memory loss for a while that he was kind of waving off, as people do. Because he lived alone, there was nobody there to really mark all the ways that he was going down mentally.
And so he finally realized something was wrong when he started making mistakes at work. He had been working at a middle school for 30 some years and had been an exemplary employee, had made no mistakes, was that guy, managed a whole bunch of people, was trusted and beloved, and he was starting to make mistakes where he was looking bad. And he just was like, "I can't go out like this, not after this wonderful career." And so that's when he realized that it was time to get help. And thankfully he agreed to come out to LA to live with me. So my show Community ended on NBC and I immediately went to Ohio to get him. Then when Community was picked back up by another streaming service, I asked to be released from the show so that I could care for my dad because the hours we worked on the show were just not conducive to me being a caregiver.
And now thankfully, they let me out and I became his caregiver and I was caring for my dad up until... Caring for him 24 hours a day every day up until this time last year, he had a fall and broke his hip. And then because of the dementia and the anesthesia, the way the anesthesia affected him, he never really came back and he never relearned how to walk. And so then I had to find a board and care with loving, kind people that would care for him the way I cared for him.
And he's been there, it'll be a year in June, and they've become a part of our family and they care for him and love him the way I do. And it was difficult to release him to anyone else because he was my baby and I was happily taking care of him. But I realize now that, though no one will love him as much as I do, there are people that can care for him at this stage of his life better than me, and I needed to get out of the way so that he could get the right care.

Dr. Peters:
Well, it sounds like you did just so much for him and continue to do so much for him, and it is about that transformative journey from really the beginning of that experience. And I'm just going to give you kudos to the first big step you did, which was moving your dad close to you.

Yvette Nicole Brown:
Yeah.

Dr. Peters:
How did you manage that dynamic?

Yvette Nicole Brown:
It was funny because my dad and I, my mom and dad got divorced when I was one years old, so I never lived in the house with my father my entire life. Me and my dad were very close. He was always in my life. But as far as day-to-day, having breakfast together or walking through the house in robes or celebrating Christmas or watching your favorite show together every week, I never had those experiences with my dad. So it was very surprising how easily he and I both fell into it as if I had grown up in the house with him. It was really lovely getting to spend that good time with my dad, and he really is one of my best friends. He and I have a love of music, we share a love of entertainment, we like the same types of movies. So it's really like, it was getting to hang out with my buddy in the house, and it was just a very... the learning curve was flat. It was just really easy. I took to it like a fish to water and so did he.

Dr. Peters:
Well, that is wonderful. I don't think everybody has that kind of experience, but I think that if you keep yourself open to that, it can turn into a positive experience. And then what about the transition when he had to go to essentially another type of living space? How was that for you and for him?

Yvette Nicole Brown:
I think it was really hard for both of us because for over a decade I was his touchstone and he was mine in a lot of ways. And so I was his everything. I was the one that I took care of him. I was the first name he said every morning and the first name he said going to bed, or the last name he said going to bed every day. And anytime he needed something, he knew that he just needed to yell out Yvette and I'd be at his bedside like that.
So I know that for him it was a very steep learning curve to be around people that he didn't know and I was not there. I was there just about every day. When he was in his nursing rehab facility, I went and stayed with him every single day for a few hours. So he saw me every day during that and I was going every day when he was in his new home. But then the owner of the home told me that it would be a better transition for him if I went cold turkey for a little while so that he could learn who the new me was in regards to his day-to-day care. And so that almost killed both of us. But I do agree that it was the right thing to do.
I remember when I first moved to LA after college, someone told me, "If you can make it through Christmas, Thanksgiving and Christmas in LA without coming home, you'll be fine. But if you come home that first Christmas and Thanksgiving, you're never going to latch on to LA being your new place." And so I kind of feel like that is what Dad had to go through too. He had to experience. He didn't go through Christmas and Thanksgiving without me, not that, but I mean he had to be in that home without me for a couple of weeks to realize that I'm okay, this is where I'm supposed to be, and Yvette will always return.
And then when I came back and started coming every couple of days or every few weeks... I mean every few days a week, he got to realize, oh, she'll leave and she'll come back. And then it got to the point where in the beginning it was like, "Well, when are we leaving together?" That was, he was saying, "When are we going? When are we going home?" And then it was, "When will you be back?" And now he doesn't even ask when I'm going to be back anymore because he understands that he's okay whether I come back or not. Now that hurts. But I do need him to be in that place where he understands that his needs will be met, that there are people that will feed him and clothe him and wash him and move him from room to room and that he has more than just me who has his back.

Dr. Peters:
And that he feels safe.

Yvette Nicole Brown:
And he does. He does. The first time I was there, he told his main caregiver, Lala, that he loved her, and that just made me, touched my heart and just thank the Lord because I know that Lala loves him. I know that Lala takes care of him. And for someone with dementia to create a bond with someone else that's brand new is a big deal. And so for him to be able to say back to her, "I love you," is just... My dad wasn't a big I love you ever. That was not his thing. He showed love, but he never was one that really said it a lot. My biggest joke is I'll say, "I love you Dad." And he doesn't say it back. "I said I love you Dad." And he'd be like, "I love you Yvette." So that's been the joke. It just doesn't naturally come to him to say it. So to hear him say it to Lala first, I was like, okay, he's safe here. He's safe and well cared for here.

Dr. Peters:
And you mentioned that those care partners or caregivers have now become sort of a part of like, and I'm going to go back to your acting, part of your community now, part of your circle. So how has that been integration for you and how do you interact with them?

Yvette Nicole Brown:
I mean, I interact with them like they're part of the family. In the interim between him being here with me and him going to his boarding care, we had an in-home caregiver that would come and help and assist. When I had to go out of town, my assistant would stay with my dad and we had a wonderful young lady named Savannah that would come and stay on certain days to give Maisha, my assistant, a chance to breathe. She also was there with him through everything at the nursing rehab. So there were some days where we never wanted him to be alone during open hours while we were there.
So if there were three or four hours I couldn't be there, Savannah would go and sit with them because I think it's very important for you to advocate for your loved one, and in a lot of these places, they're just a number. And so they will be in their bed and they'll be soiled and no one will change them or no one will come and move their bodies so they don't get bedsores. The physical therapist is not coming in to walk them like they should. There's a lot of nightmares that can happen.
I remember in this place my dad was, there was a poor man that would yell, "Help me," every day I was there. At some point while I was there, he would scream, "Help me." And the thing that was most daunting about it is that he was able to scream it five, six or seven times before someone did go and help him. And that to me was just like, my dad will not be going through that. So as long as he's awake, I'm going to be here with him so if he needs anything, me or Savannah or somebody can provide it.
So because of Savannah and some of the other wonderful palliative care people we had, the transition from that life to board and care life was very, very smooth because he was already getting used to meeting different people and he was getting used to being in different places. So it just helped because Alzheimer's patients do not like change. They don't want you to change. They're like a ficus. You move them to the other side of the room and they wither. So you have to stay with them and make sure that the people that are caring for them know their favorite music and their favorite movie. And that's Five Heartbeats for my dad and Motown music for my dad. So if they kept that going, then he was okay. So yeah.

Dr. Peters:
I think it's challenging to have a parent with Alzheimer's. What have you done for yourself?

Yvette Nicole Brown:
Absolutely nothing. I am the worst at self-care. I have no idea even how to answer that question whenever I'm asked. I have a drawer full of gift certificates for massages because my friends are wonderful friends and they want me to be able to take care of myself. I just have not been able to find the time to do it because in my mind, it feels selfish. It feels like any time not spent with him or working on something for him is time wasted, even if it's spent on me. So I don't really have a way. And also most of the days when I'm off, if I'm not doing something like this, I'm not technically working today, but I had meetings and I had this wonderful podcast with you that I was doing, when I'm not doing that stuff or with my dad, I'm so exhausted, all I can do is sleep. So sleep has become my self-care. But rest shouldn't be a reward. Rest should be what you naturally have as a human being. So I'm still trying to find the way through all of that. I still don't know how to do it.

Dr. Peters:
Well, I'm going to give you some suggestions. So first is we have had some great podcasts on some other people that are caregivers for their loved ones with dementia. And I would say one that's in your area is Kitty Norton. She did a documentary on WineWomen&Dementia.

Yvette Nicole Brown:
Nice.

Dr. Peters:
And she talks about her caregiving experience with her mom. So I'm going to say check out her film and check out her podcast.

Yvette Nicole Brown:
Can you do me a favor because I'm an old lady, can you text email me that information? Because I do want to check it out. I'm just so old and my mind is going, it went right in, something about wine and women, it was something. But yeah, so I would love to watch that. That would help a lot I think.

Dr. Peters:
And then another one is probably one of my favorite people to talk to in the world is Janet Fanaki has a podcast called Resilient People, and it's all about resilience and how resilience is different for everybody. And she's been the caregiver for her husband, for her parents, and also highlights the journey of a lot of different caregivers and a lot of different people that have had a challenge and needed to be resilient. So I think those would be my two big suggestions. I'm a doctor, I'm prescribing stuff, this is what we do.

Yvette Nicole Brown:
Yeah, I love it. Do it.

Dr. Peters:
So I know that you're also, you've really stepped into a space doing Squeezed, you've sort of become, you're sort of sharing your experience and it sort of pushes you towards advocacy. Well, I'm so glad you made time in your busy schedule and also in your life of caregiving and for sharing your journey. So thank you, Yvette, and I also want to thank all of our Brain & Life listeners.

Yvette Nicole Brown:
Thanks guys.

Dr. Correa:
Want to learn more about the conditions discussed in this episode and other factors that could impact your brain health? For the latest on causes, symptoms, diagnosis, treatment, and management of more than 250 of some of the most common and rare neurologic conditions, please visit brainandlife.org/disorders.

Dr. Peters:
Well, hello listeners. And again, I am Dr. Katy Peters, your co-host on the Brain & Life Podcast, and I'm so excited today to introduce our expert, Dr. Francesca Falzarano. She's an assistant professor of gerontology at the University of Southern California, that's known as USC for people that are interested in sports or also in gerontology and also developmental psychology. And she's a developmental psychologist whose research is focused at the intersection of technology and dementia care with a particular emphasis on enhancing the mental health and wellbeing of family caregivers, motivated by her personal experiences with caregiving.
Her research adopts a developmental perspective to examine the diverse and transitory needs of dementia caregivers through the entire illness trajectory from diagnosis, progression, to death and into bereavement. I think we're going to have a really interesting conversation with her today about how to examine technology as a mechanism to foster mental health and wellbeing for our caregivers and care partners. So Dr. Falzarano, welcome to our podcast.

Dr. Falzarano:
Thank you for having me.

Dr. Peters:
I just gave a short introduction. We'd love to learn more about you and tell us where you're joining us from today.

Dr. Falzarano:
So I am normally based in Los Angeles, but I am currently in New York back home with my family for the summer, so on the East Coast.

Dr. Peters:
That's great. That's great. So you get to spend time with your own family, so that sounds like it's a little vacation or are you also doing some work or just visiting loved ones?

Dr. Falzarano:
Work never stops. So we are definitely, we are vacationing, visiting loved ones and doing as much research as possible. A lot of my work really focuses on collaborative relationships, and so doing my best to get everybody at the table to talk about how important top caregiving is for people beyond academia.

Dr. Peters:
I agree with you completely, but you know what? I find your specialization so interesting, but I really want to learn more and delve into it. So tell us more about developmental psychology.

Dr. Falzarano:
Absolutely, and I love that you picked up on the developmental aspect. Normally people assume that developmental psychology is focusing on the psychosocial health and wellbeing of just children, but I use a lifespan approach and we know development never stops across the lifespan. So I really apply a developmental approach to looking at not only the dementia trajectory and how disease progression manifests over time, but also how the caregiving role kind of evolves in tandem with progression and how it grows in intensity and demand and the impact that that can have on caregivers' health and wellbeing.
But I have to say, my research is simply a mirror of what my lived experience was from a very young age. When I was 14 is when my mom received her diagnosis of young onset dementia. And so that was a third parent growing up and I decided that I wanted to study this further. I wanted to understand, I saw the effects it had on my family and how complex and nuanced the role really is and how it is something that impacts the entire family, not just the patient, not just the caregiver. It's not a very simple two-person relationship, it's much broader than that and much more complicated.
So I wanted to understand it and I went and pursued my PhD in developmental psychology and then got some postdoctoral experience in geriatrics and palliative medicine at Weill Cornell Medicine in New York. And so that helped me kind of take these very typically siloed disciplines and bridge them to inform a scientific approach to study the caregiving experience and how we can intervene in ways using technology, as you mentioned, to support, enhance support for family caregivers, as well as alleviate stress because it is a very complex role.

Dr. Peters:
Yeah, I totally agree and thank you for sharing your journey. That's your caregiving journey, but part of your journey was to become really a researcher and an advocate and to also help other caregivers. I have a really lovely, lovely colleague, Brock Greene, who started an organization based on his caregiving experience, and he actually changed his phrasing. He actually calls himself a careguider.

Dr. Falzarano:
I love that.

Dr. Peters:
So I'm actually going to say that now, I should give you that moniker too because it feels like that's what you're doing.

Dr. Falzarano:
It's so true, and most people don't identify with the term caregiver. I was a daughter, but careguider, I love that. I love that. I will make sure to reference him.

Dr. Peters:
Shout out to Brock Greene and Oligo Nation. So another great caregiver and careguider. Your research center centers around caregivers of patients with dementia. If you had to sort of pick your top five, what do caregivers need? What do they need today?

Dr. Falzarano:
They need education and information at the point of diagnosis. They need access and referral to resources. There needs to be some kind of continuity of support for caregivers as they navigate different stages of the disease, and they need to have their voices heard and they need to be better included in care conversations and really integrated as a member of the primary care team. I gave you three. And we need to just understand the complexity involved in that a one-size-fits-all approach to supporting caregivers is not going to happen. We need to take into account all of the factors that go into how we perceive and experience caregiving, and I think we need to equip them proactively with the tools they need to be prepared for whatever comes ahead for their role, but they really need knowledge.

Dr. Peters:
I agree with you. I think they need knowledge and I love the idea of being proactive and you mentioned that the caregiving experience really starts at diagnosis and that we should intervene at that time with those caregivers. The one thing really unique about Alzheimer's now is we can diagnose it potentially even earlier because of new technologies with detecting amyloid, also doing lumbar punctures and detecting it. What do you see would fit in that space before someone really is not severely symptomatic yet? What do those caregivers need?

Dr. Falzarano:
I think at that point it's kind of like, Hey, just what to expect in the beginning stages or what can I do for my loved one to help them manage their life as independently as possible for as long as possible? But I think those early conversations are extremely important, and that is such a prime time to have to really engage your loved one in a conversation about what they want for themselves and have them at the forefront of decision-making and having their wishes known.
But I think that going back to how I think technology is powerful, a caregiver who is providing care for an individual who might just need a little bit of help managing their medication or going grocery shopping, those needs are going to be so different from somebody who is dealing with end-stage dementia and long-term care insurance and needing respite care. And so the needs are so diverse, and that's why I think technology is powerful because it has all the information that we need, we just need to provide it in a streamlined approach that it meets you where you're at in terms of being on your caregiving journey.

Dr. Peters:
You mentioned technology, so tell me about some of the technology that you're sort of studying or utilizing for your caregivers.

Dr. Falzarano:
Absolutely. So we have three different platforms that we are currently doing randomized controlled trials, looking at the influence of these technologies on psychosocial outcomes in caregivers. The first one is called CarePair, and that was born out of what I wanted for myself when I was navigating caregiving for both parents. And I got kind of angry and I said, why is Netflix able to so easily tell me what I want to watch? Amazon can tell me no problem what I really don't need to be buying, but when it comes to getting services, resources, a referral to a palliative care specialist, anything, I was stuck going through 10 pages of Google searches that gave me nothing of substance. So it really kind of, that experience motivated me to write a grant for the National Institute on Aging. I was awarded a five-year career development award to basically do-

Dr. Peters:
Congratulations. Wow.

Dr. Falzarano:
Thank you, thank you. And the first two years was going to the caregivers, going to providers, going to them first because I am a sample size of one and my experience does not represent everybody's, and I wanted to know, I know nobody needs another app. I want to know what you are currently missing. What do you wish you had? And it was really just a mechanism that they could be connected with services that were of relevance to them. You really let the caregivers take the wheel in the development and the design.
We collected a lot of different types of data and it ultimately turned into this app called CarePair where it's a 10-item self-assessment and referral platform, but it's using AI and machine learning and all those fancy terms, but it's a way to kind of cut through the mess of just an endless Google search to get to the type of support they need when they need it, that's relevant to their area of need. Because otherwise we can't just throw everything at caregivers and continue to put the onus on them to find education and support. We need to be able to personalize interventions. And AI I think is a very powerful way that we can help personalize support, not only for the caregiver but also the person with dementia.

Dr. Peters:
Well, I think that it sounds like just absolutely awesome. Sign me up, I'm ready. Let's do it. I'm ready for my patients and their caregivers. They definitely need so much support, and I think that if you can find a way not only to advance the technology and base it on something that's experiential from those caregivers, but also make it easy and accessible.

Dr. Falzarano:
Easy, accessible. Of course we want the nice, flashy, innovative thing, but it's moot if we can't actually, it's not perceived as useful and usable by the people that we want it to benefit. So that's why it's so important to involve them in every step, and they welcome telling their experience and getting to use that to inform how we do research ultimately.

Dr. Peters:
So how is it delivered? Is it delivered via phone? Is it delivered using the computer? How does it get to the caregiver?

Dr. Falzarano:
It's a mobile app, so it is delivered via phone. And so we will be testing it and seeing how it impacts outcomes such as stress, preparedness, wellbeing, education, knowledge. We want to know all the things and we want to know what's wrong with it as well just as much because we need to be listening to the end user at every juncture for this to be scalable, but also for it to be implementable and into the real world and to address the needs that caregivers have right now. So I'm very passionate about getting this work outside of the ivory tower of academia and promote partnerships across the entire continuum of people that are at the table in dementia care.

Dr. Peters:
Absolutely. So has this project started?

Dr. Falzarano:
It has started, we've gotten a bunch of feedback from caregivers and now it's undergoing one more round of refinement, so it will be launching soon in the next month or so. So I'm very excited.

Dr. Peters:
Oh, I'm so excited for you and I'm excited for our caregivers. That's amazing.

Dr. Falzarano:
Thank you. Thank you so much.

Dr. Peters:
And you mentioned, I was checking out some of your work and one of your papers really highlights the phenomenon of long distance caregiving, and I'd love to have a chance to chat about that because I can see how something that is an app or something that we could use on our phones could be helpful for what I think this is. But can you tell me more about long distance caregiving and what are particular strategies for people that find themselves in that particular situation?

Dr. Falzarano:
Absolutely. Long distance caregiving is becoming more and more common. It's a growing subpopulation of caregivers who, and I don't think they've been given the proper credit they deserve as caregivers. If you think of just about how our society has changed demographically over, with the baby boomers reaching older adulthood, you also have with that this change in what the bottom of the population distribution looks like. We're having fewer children, we're having children later in life, and they're smaller family sizes. And also most of us don't live in the same city as our loved ones because of increased population migration, you have unlimited workforce opportunities all over the place, and so the likelihood that you're going to be next to your aging parent, it's not as common as it once was.
And so these people are on the ground and you add distance to the factor, that just complicates an already stressful situation where they're not able to necessarily be involved in the day-to-day care of their loved one, but they are still managing and coordinating all the care and dealing with insurance and making sure the person gets to their appointments, but they have to do it from a significant distance away. So their needs and their sources of stress are going to be so much different than somebody who lives with their mother or father.
And technology, again, I think it's another way that it makes, this has opened up an opportunity for caregivers who were never visible in care encounters before because they were not physically able to attend healthcare appointments. Now they can be visible and at the table during conversations with providers and be really interfacing with the person's doctors and be involved in their care in a way that's never been before. I mean, I think the pandemic finally opened our eyes a little bit about the power of telehealth and how video conferencing now is one such, it's such an easy way to keep the caregivers engaged, and the more harmony I think we have between this family care force and the formal care workforce, the better it is for the patient.

Dr. Peters:
I couldn't agree more, and it just reminds me, I'm on service right now. I'm rounding in the hospital and a patient pulls out their cell phone and they're like, "Can I call my family member?" I'm like, "Absolutely." I said, "If you want to record me, if you want to do anything," you want to have that dynamic. You want to have everybody involved if you can, but if you could come up with some strategies so that it could make it easier and more efficient and also more palatable, I think that that's wonderful. So kudos to you.

Dr. Falzarano:
Thank you. Yeah, and I know some other technology that's kind of emerging in this space where they're testing AI, text to speech to be able to better document and summarize provider appointments and what kind of the content of the discussion was. So everybody's on the same page and we want just, I think it's a great way to promote continuity of care.

Dr. Peters:
Oh, absolutely. And you've sort of mentioned also there's other people involved with your family member potentially. So it could be staff at an assisted living facility, it could be like staff in the hospital, staff in rehab. You did a really interesting study about those relationships and about how family members interact. I thought that was really, really cool and a very interesting article. What did you learn from that study?

Dr. Falzarano:
We learned that how families perceive their relationships with staff, how they perceive the communication to be, how friendly they are, how much do they seem to attend to your loved one that really has an impact on caregiver outcomes, on feelings of burden, depression, because they are feeling siloed from the formal care system most of the time, where they're not engaged in these conversations.
And the more harmonious, the more personable those relationships are, the better we saw outcomes, not only for the family caregiver, but we also saw reduced depression and feelings of job-related burnout among the direct care workers that we included in the study. So it's beneficial for both. Actually, it's beneficial for everybody involved. I did a follow-up study looking at how in assisted living and nursing homes, how does the interpersonal dynamics between family and formal caregivers impact the resident? And we saw, they had better mood, they had lower levels of depression. And so if it's helping job retention in a workforce that is severely under-equipped for this population that we have to care for, if it's benefiting the caregivers and the resident, and I think that's what we need to be doing.

Dr. Peters:
Absolutely. Do you have any recommendations, sort of I guess from your psychology background, those can be very stressful situations for caregivers, for people that are staff members in those assisted living facilities. How do you think it's best to sort of, I guess, get them to interact in the healthiest way possible?

Dr. Falzarano:
It's such a good question and it's an individualized thing, but the thing that family caregivers have expressed is that they want staff to know who their loved one is. And a little bit about a person's history goes a long way. So whether that's implemented in an EHR or a health record and you can say, "My mom likes this kind of music," or "I will check in at this time every day." Those are other ways, and I know that's more from a systems level perspective on how we can change things.
And for the caregivers, and I hate kind of screaming this from the rooftops, but we have to be proactive always. And you kind of have to be a pain in the butt a little bit to make sure that you are getting the information that you need that is able to put you at ease. Because a lack of information, that lack of communication, that very fragmented wall between the caregivers and the providers is it could make or break somebody's experience.

Dr. Peters:
I'd say as somebody who's a provider who's seeing patients in the hospital, in the outpatient setting, when you get those rich nuggets of information that are about your patients or their loved ones, it makes it so much better and so much easier to deal with really stressful situations. And so I just remember recently for a patient that had to be transitioned to hospice, just learning that she really loved, loved, loved basketball and got to see her favorite coach recently, and it was a great experience and learning about that and sitting and reminiscing about that was just a really nice touching moment. And I think that even those little things can help. What do you think?

Dr. Falzarano:
Totally, absolutely. You actually touched on my second project that I am currently pilot testing, which is called the Living Memory Home for Dementia CarePairs. And it is a reminiscence platform for family caregivers to kind of facilitate with persons with dementia while they still are able to engage. And it's meant to be a way to document their life story, to get them to engage in a shared activity together, get the person, get them to think about their relationship and also the person behind the dementia.
Because for a lot of caregivers who are in the trenches day after day, it's hard to see behind anything but what the disease is showing you. And reminiscence is a very powerful tool for both involved. And I think that being able to have the caregiver kind of help document these memories, and it's a way for them to get talking and have a shared experience and engage together in ways that it's not caregiver/care recipient, patient/provider. I think that there's real potential that that could really improve quality of life for both.

Dr. Peters:
I couldn't agree more. And again, I feel like you're just touching on so many great points and we've interviewed so many wonderful caregivers, and I would include you in one of those categories because you are too.

Dr. Falzarano:
Thank you.

Dr. Peters:
What do you think, just sort of in 20 years from now, what do you think the caregiver journey will look like or should look like? What should it look like?

Dr. Falzarano:
I think it should look like a world where there is no caregiver unsupported in this journey, that they don't... I kind of like to, and maybe this is a poor comparison, but once you get a hospice referral, it unlocks a whole host of resources and support that are ready to mobilize. And I think if you take that same idea at diagnosis, caregivers should know, if they have a problem, exactly how to find the service or the resource that's going to help them navigate it. There are way too many situations where these individuals are falling through the cracks and their health suffers from it, and a lot of these situations could be avoided if the support was built in. And so we need to create a trajectory, a pipeline for caregivers who are navigating this journey.
I recently published a paper and the title is Diagnose & Adios because that's the most attention you're getting is during the process of diagnosis. And then you are told, and I remember this conversation with my own mother, you're told, "There's nothing we can do to help you, so we'll see you in a year." And caregivers are left like, "What?" Right now is education on the fly after some sort of crisis is when caregivers have to all of a sudden become an expert, a nurse, a legal representative. They have to do everything on the fly. And so there needs to be more awareness. And I always kind of go back to this Rosalynn Carter quote, and I'm sure you've heard it, but there's three types of people. It's those who have been caregivers, those who are caregivers, those who will be caregivers. It will touch everybody.

Dr. Peters:
I completely agree. You'll either be someone who will need a caregiver or you will be a caregiver or you are a caregiver right now. So I just want to say thank you so much, Dr. Falzarano. I think that with you, we're going to get there sooner than 20 years. It's going to be tomorrow. Yay. And I love the app, it's CarePair, right? Is that the app?

Dr. Falzarano:
CarePair, yes. CarePair.

Dr. Peters:
So we'll look out in the future for CarePair. So just thank you so much again, thank you for sharing your experiences, your expertise for our listeners.

Dr. Falzarano:
Thank you so much for having me and for bringing light to such an important topic.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainandlife.org and leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes and you can follow Katy and me and the Brain & Life Magazine on any of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online, @neurodrcorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online, @katypetersmdphd.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

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