DR. MARC ROTHMAN: Transforming Caregiving and the Perception of Dementia Through the Arts

In Episode 98, Don and I have a fantastic conversation with Dr. Marc Rothman, MD,founder and president of the Dementia Spring Foundation, a non-profit 501(c)(3) venture studio that invests in visual and performing artists and innovators who are changing the prevailing narrative of dementia and bringing joy and creativity to the dementia community through their work. Founded in 2020, the Artist Network now includes over 200 artists and innovators from around the world who are grappling with memory loss, Alzheimer’s disease and other dementias in their work. New artist Spotlights are shared every week on the Dementia Spring website. (Including our Oscar qualified short film, My Mom and the Girl ,starring Valerie Harper in her final performance!!)Through the Foundation’s annual, competitive Dementia Arts Impact Award program, funding, technical & marketing support, and subject-matter expertise are provided to a select group of artists and innovators who are telling new stories of dementia and bringing theatre, dance, music, and other visual/performing arts programs to those living with dementia.And if that's not enough, Dr. Rothman is also the CEO of Lizzy Care, a company providing tools and resources for dementia care at home.

Join us as our guest,Dr. Rothman, reveals his insights on harnessing artistic talents to enhance caregiving experiences. Discover how integrating art into dementia care not only brings joy and connection but also offers a holistic approach to treatment that blends medical and artistic perspectives, creating a more enriched life for both caregivers and individuals with dementia.

Immerse yourself in discussions on the profound impact of music and visual arts on mental health and healing. We underscore the importance of preserving memories through photography and the ethical considerations that come with sharing such intimate moments. The episode also touches on the cultural shift required in our institutions to prioritize arts therapy, advocating for comprehensive care models that improve quality of life. With personal stories and innovative projects, including virtual reality and comedy, we demonstrate how creativity stands as a beacon of hope and connection for those affected by dementia. And that includes, Love Conquers Alz, of course!
xoxo
Susie

Chapters

• 0:01 Creative Solutions for Dementia Care
• 8:36 Journey Through Dementia and Arts
• 18:46 Changing the Narrative
• 25:24 The Healing Power of the Arts
• 39:21 Preserving Memories and Enhancing Engagement
• 52:25 Navigating Dementia Care Challenges
• 1:04:18 Portraying Dementia Through the Arts
• 1:15:11 Navigating Privacy and Dignity Boundaries

Transcript

Unknown: 0:00

Hi. I'm Angela Fairhurst, founder of Jerry gadgets, a revolutionary solution for dementia care, inspired by my personal journey caring for my mother with dementia, I develop patented sensory tools that engage loved ones, reduce anxiety and create joyful moments without medication, providing much needed relief for caregivers. Jerry gadgets currently come in three silicone buckets with activities like flower arranging, shape sorting and tactile fidgets with more in development. Each Jerry gadget is designed to stimulate the senses, fostering connection and communication even at advanced stages of cognitive decline, non toxic, built to last and dishwasher safe. Jerry gadgets transform caregiving by promoting engagement, improving quality of life and offering caregivers a respite from constant supervision. Discover how our innovative products can bring joy and meaningful interaction to your loved ones with dementia, while easing the caregivers burden. Visit Jerry gadgets.com to learn more and start making every moment now,

Don Priess: 1:06

for a limited time, you can get 20% off your next order of Jerry gadgets by going to www dot SSW, ww.com, Jerry gadgets for dementia and enter the special love conquers all's coupon code, LCA, 20 get 20% off Jerry gadgets today,

Unknown: 1:24

when the world has got you down,

Don Priess: 1:27

Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear and to date, there's no cure. So until there is, we continue to fight with the most powerful tool in our arsenal love. This is love conquers all, a real and really positive podcast that takes a deep dive into everything, Alzheimer's, The Good, The Bad and everything in between. And now here are your hosts, Susie singer, Carter and me. Don Priess singer, song, sing a song.

Susie Singer Carter: 2:04

Hello. I'm Susie singer Carter,

Don Priess: 2:07

and I'm Don Priess, and this is love conquers all. Hello, Susan,

Susie Singer Carter: 2:12

hello, Donald. I wonder. I want to first. I want to thank everybody for coming today, because we always forget to do that, and we do want to thank you for joining us, because there are a lot of places you could be and a lot of people you could be listening to, but we're happy you're here. So thank you for joining us, right? Yeah,

Don Priess: 2:32

I like that. We should do that more often. We should thank people, yeah, all right, thank you. Thank you.

Susie Singer Carter: 2:39

I'm thinking you too. Don I just finished reading, listening to Oprah's latest book. For what, I know for sure, this is the second, the second edition of this, because she wrote it, I don't know, a decade ago. Now she's revisited, and it's, it's, you know, filled with pearls. A lot of it is about being grateful, and that if you take moments to be grateful, you can't you know it really does make a difference when you are just buried in your life and you're you're just on automatic and you're do go in, especially if you're in a creative endeavor, which is part of this is the theme of today, is, is creativity, and when you're, you know, when you're in something so deep and you're get frustrated, because there's always going to be challenges, right? At least, if you could stop and take a moment and say, here's what I'm grateful for. I'm grateful, you know, for all the little steps that you've made, for everybody that supported you, for you know, someone who complimented you know your, whatever your your the way that you said hello, thank you for saying hello. Someone you know acknowledges that that's so beautiful. And we, we take those things for granted. So I just thought I would share words of wisdom from Oprah.

Don Priess: 4:03

Yeah. Okay, well, yeah, because you do, you get so mired in what's you know, what's wrong, that you forget what's right. And there's a lot right that we don't tend to think about, and we need to learn hard

Susie Singer Carter: 4:16

on ourselves. We're hard on ourselves right because we want to, especially if you're a type and you want to do well, and you think, Oh, I'm going to, you know, why didn't I do it that way? Why didn't I do How about, how about looking at what you did do, and say, I'm so happy that that happened and that worked out well, right? And, and, you know, anything worthwhile is going to have challenges and issues. You know, we're not nothing just happens. It just doesn't fall into your lap. If it did, everybody would be doing it. So, you know, just be acknowledged. Just acknowledge yourself for the things that you do well and and then be grateful for the people that are around you that can pick up the other pieces. I. Yeah, right, yeah. It's like my first mentor, Sean McNamara, who directed, well, he directs a lot of stuff. He's got Reagan out right now, but he gave me my first breaks in this industry. And he always said, you know, his, his, his secret sauce was surrounding himself with people that were more talented than himself. So I think you know that's not that's, that's, that is a humble way that's

Don Priess: 5:24

not hard for me. That would be so simple for me. No problem. Got that one done, done and done.

Susie Singer Carter: 5:33

Fox chick,

Don Priess: 5:37

and I'm thankful for that.

Susie Singer Carter: 5:39

Yeah, yeah, right. Okay, Me too. Me too, yeah, Don. And I always say, like, we make one good, one smart person, because as a, as a production company, was, like, some things like I would never think of, and I'm like, oh my god, Don, how did you think of that? And then he'll the same thing with him, and so you fill

Don Priess: 6:00

in the rest of the stuff. Yeah, yeah, yeah.

Susie Singer Carter: 6:03

So anyway, speaking of creativity we have, we're going to talk about that today, art and all those, all the lovely things that I love and you love, and most people love that and how it works into caregiving and dementia and Alzheimer's and and other progressive diseases, and everything in life really, right? I mean, everything in life is more more enhanced and more joyful. And I can't imagine life without art. I just can't. So why would? Why would? Why would we keep it from anybody? Boggles the mind, right? So let's get into talking to our guest, and you're going to you're going to introduce Dr

Don Priess: 6:53

Mark Rothman is a physician with over 20 years experience in elder care on art and dementia care and aging at home. Dr Rothman is CEO of Lizzy care, a full service dementia care company that provides the team tools and resources that families need to manage their dementia journey at home safely and effectively. He is changing the conversation around dementia and dementia care through the arts with his non profit organization, dementia spring, supporting the work of those who depict dementia in various mediums. Each week, dementia spring publishes an artist spotlight showcasing this work, including a recent piece that we are familiar with, none other than Susie singer Carter's Oscar qualified short my mom and the girl you might have heard of it. Each year, the organization provides grant funding technical support and marketing to artists and art programs via the dementia arts Impact Award. We are so excited to dive into this wonderful world of creativity. So let's say hello to Dr Mark Rothman, hello. Dr Mark,

Susie Singer Carter: 7:57

hi everyone. How are you? Hi. Susie, Hi Don Hello. Dr Mark. We're so excited to have you here today, because it's our favorite subjects that we were talking about, right? So making educating people about dementia and Alzheimer's and progressive diseases and de stigmatizing and talking about how we do it with the arts, and I think that you are a hero for this. So thank you for leading the way and also supporting artists that want to you know, also be a part of changing the narrative. Thanks, Susie, thank you. Thank you. Thanks.

Marc Rothman: 8:38

It's great, great to be here. I'm really grateful for you guys, thankful for your kind introduction. Don, thanks for that and for calling out some of the work that we do here at dementia spring and the foundation, the nonprofit that's behind dementia spring. And grateful to you, Susie, for connecting with us, sharing with us some of your amazing work. I really loved watching your film, and I'm excited to continue talking to you all about the arts and dementia. It's, you know, it was really a labor of love. Is how this all started for us here at dementia spring. I'm happy to share a little bit about that with you and talk to you about Lizzie care as well, which is allowed me to, it's really allowed me to, to be doing dementia and Alzheimer's work all day, every day, kind of using both sides of my brain, right the medical side of my brain and the business side of my brain, but also the artistic side. You know, after after a long day of helping families manage through the through the dementia journey, navigate the dementia maze and think about important things from a physician standpoint, you know, things like diagnoses and treatments and recommendations and caregiving and things like that. It's great I get to sort of turn the other side of my brain on and read through a script about somebody dealing with dementia, or read about a program for dance in a assisted living. Facility across the country, or think about an interesting VR model to help people with dementia, you know, see things that they haven't seen in a long time. And all of that work is just such a great compliment to the busyness of being a doctor and executive all day long. It's just fantastic. Wow.

Susie Singer Carter: 10:17

Well, congratulations on making that balance, because that's, that's a that's not easy to do. So you that's, that's very special. And, you know, just again, the grateful, the G word, I mean, it's it, we're grateful to have somebody like you that has an understanding of both sides, right? Because I, I don't have all, you know, I've only learned by rote of what it is means to have dementia or Alzheimer's. So, you know, I stumbled through learning what was the right way to proceed in the journey without, you know, with Google as my master, but that was about it. And then mostly my own experience, you know, like making a lot of bad, horrible mistakes, and then going, okay, that's not the way to go, pivoting a lot. So it's really, it's really very valuable that for you to give both perspectives, both lenses, to, you know, to really provide that information for everybody, and maybe, you know, shorten their their their tenure, their learning experience, because mine, you know, it can take a long time to you finally go, oh, that doesn't work.

Don Priess: 11:31

And it's always changing, because the the disease is always changing. You know, to say, Joe, that worked yesterday, but guess what? That's not working today. That's right.

Susie Singer Carter: 11:42

So how did you get into this? What brought you into this focus of of, you know, cognitive decline, really, and and, you know, mixing it with your with your passion for arts. Obviously, it has to be a passion.

Marc Rothman: 11:58

You know, when I was in medical school, I was exposed to what's called an Alzheimer's and dementia Research Center. And lots of great universities have those, probably a few near you. And that was really the first time, as I was, you know, going through medical school, learning about the, you know, the heart and the lungs and the liver and the kidneys and all the important things that keep the body going. When I made it into the Alzheimer's center. It was the first time that I really appreciated how much Alzheimer's is a disease of the entire family. It's a disease of the entire community, in a way that a lot of other diseases really aren't, and that that really spoke to me. I kind of have a humanistic nature in me, and I like that. It didn't scare me. And, you know, a lot of folks go into medical school, they want to find a problem, fix it, and are not comfortable with things that can't be fixed so easily. I'm a little bit more comfortable with things that can't be fixed so easily, that are a little more complicated. Require a little bit more wrestling with it and figuring out things, iterating as you go, like you did right learning day after day, and also just the complexity of families, because it does take a village right to take care of a loved one who has Alzheimer's and dementia of any kind, really. And so I was exposed to that, and I really liked that a lot. And I also was exposed for the first time to true interdisciplinary care, which for me, is all about not only being the doctors who do the work, but the nurses, the social workers, the nutritionists, the gerontologists that I met at the ADRC there at New York University, and I just loved how they worked together in concert. And for me, that's been a model for my whole career. Part of the reason I chose geriatrics as a special, as a specialty, is that it gave me the opportunity to work among teams, really, really diverse teams, right? You know, you can't, you kind of equate the playing field a little bit, because what the social worker or what the dietician has to say about this particular problem, I'm sure you've encountered a problem related to mom not eating or not being able to chew or not being able to digest, or, you know, different foods that she like, that contribution is really just as important as the physicians contribution, right? And so I really love that. That's really what got me into geriatrics and got me and just propelled my my career. It was later, and I've always been an arts person. I was a reviewer for The bellevue literary review back in medical school, and wonderful journal that describes illness and how people cope and deal with illness and overcome, sometimes succumb, sometimes, but navigate those journeys, you know, through a creative lens. And my wife's also in the arts. She's a book restorer and book restorer and amateur photographer. And you know what happened is when the pandemic hit, all the people that we knew with dementia who were accessing the arts, and all the people who were leading on the other side, from the artistic side, to help people with dementia, they were all out of work. They were just done in a day. I mean, the world just shut down. And so the folks with dementia were cut off from all the creativity and. And the artists were, you know, screwed. They couldn't find their clients, they couldn't get paid, they couldn't make a living. And Cece and I, my wife, decided this is the time to launch dementia spring and the dementia spring Foundation, because we realized, not only do these populations need to be connected more and more, they need to be connected better than it's been done in the past. It's not that organized. How all this happens. It's starting to happen better now, and also that I've always felt very passionately that we need to change the narrative around dementia and Alzheimer's disease. I always look back and I say there was a period of time when you couldn't say the word cancer out loud, right the C word, nobody would say it over dinner. And eventually, when you think of cancer right now, you think of pink balloons and parades and marches for breast cancer, you think of ribbons and awareness and people who are surviving and thriving. Same thing was largely true with heart disease. You could not say the word heart attack. In my grandparents generation around the table, you would whisper it, you would never say it out loud. And now, when we think of heart attacks, we think of stents and Lipitor and red pillows that you hug after surgery and Heart Walk. I mean, you just this is what your brain thinks of, even HIV, which was essentially, you know, a death sentence at the beginning eventually became associated with rainbows. So I knew that, as I knew that in healthcare, the same thing can happen for Alzheimer's and must happen for Alzheimer's, because the prevailing view when you say the word out loud is nursing homes and wheelchairs, right? And that does not represent the totality of the experience of Alzheimer's disease anymore at all granted in the past, people were hidden. They were kept away from their neighbors. They largely were made prisoners in their own homes. Sometimes there's an enormous amount of shame and fear that still exists. I'm not denying that it exists, but the reality is that tons of people with Alzheimer's and dementia are living today. They're living their lives as I joke sometimes with people they don't love to hear it. People with mild cognitive impairment and early dementia are on the roads with us. They

Susie Singer Carter: 17:15

I was gonna quote you. I was gonna quote you with what you said about when you were you know, presenting my my film. You said, I'm going to quote. And you said, as I remind folks all the time, persons living with dementia are all around us in the supermarket and at the park, in the theater and then and even driving so, right? And I love that, I love that you say that because it's true, and we picture people differently, like, you know, and I say, in the beginning of my journey with my mom, I tried to shield her from the public because I thought that for her own dignity, I thought. And then I and then I suddenly realized that the more that I shared what was going on and allowed her to be her, people stepped up. And people didn't, didn't dismiss her or treat her disrespectfully. They embraced her.

Marc Rothman: 18:08

Yeah, yeah. And, and, you know, and, and if you think about the length of time that these diseases can last, it's not all wheelchairs and nursing homes. That's a portion of it, but that is not even probably the majority. And so our viewpoint of this must change. It's so myopic to think of wheelchairs and nursing homes instantaneously, we have to fundamentally change the perception of this in the public's minds. And you know, a little humble pie, the doctors aren't gonna be the ones to do it. I love us. I'm part of, part of the squad. I'm in the team. I'm a physician and a proud physician and a healer. The doctors are not going to be the ones to change the narrative for society. It's people like artists who are going to do that through books and films and song and dance and just incredible expressions. You know, they have the freedom to sort of be to exaggerate, to make the point right, to point out the humor in the journey. Physicians don't have the time to do that, or the inclination or the training to do that. So that's sort of how dementia spring got born, and we decided we were going to write. We were going to fund grants to independent, grassroots artists who are trying to get work completed, so that we can help bring that to the public and teach everybody that there's a new way of looking at memory loss, dementia and Alzheimer's in this world, and that's our challenge for tomorrow.

Susie Singer Carter: 19:34

I love it, and also I'm going to add that it may not be the doctor's responsibility or their inclination, but on the other hand, our health care system and our providers need to be a little bit more educated on what it is to have Alzheimer's, what it is, because a lot of them don't know, and a lot of people, like in you know, first responders, er rooms, don't really understand Alzheimer's. And. Mentioned and mistaken for other things. And so there is, you know, a even wider net that we need to throw in terms of education. You know, they may not have, they don have to understand it or embrace it the way we do, but they need to for the for to be responsible is to understand that somebody with Alzheimer's, who may not be mobile, that's their base, and maybe they're they're they're not speaking anymore, that's their base, but they are still enjoying their life so and just because someone's in a wheelchair, um, doesn't mean that they they're not valuable, because they're valuable to their family, and they're valuable to what they can still give. And so that's what I want to share, too, at that stage, is still valuable and still and deserves dignity and quality in care and empathy, yeah.

Don Priess: 20:58

And also on a practical end, because, you know, Susie, it led with your mom. She was because the doctors did not understand her Alzheimer's. It led to her, I mean, something that changed her life and your life, and everyone around her life completely when they basically, you know, strapped her down and drugged her because they didn't know, they weren't able to tell what was going on and how to deal with it. And it changed her life after that forever, you know. And so it's so on a health on a health point. It's very important. And and first responders to what we showed in the film in my mom and the girl you know with the police that they didn't recognize, and it's hard to recognize sometime when they're at a certain stage where they can be completely, you know, normal, and you know, you're talking, and then something happens, and, you know, not being able to recognize that. That's, that's, it's very important.

Susie Singer Carter: 21:51

It really is. Yeah, what do you Yeah, no, I

Marc Rothman: 21:55

agree. And first of all, and Susie, you said what you said extremely well, I couldn't have said it better myself. You know, when I did speaking of having to train lots of folks in society to recognize these people, when I did training for disaster management after 911 I had to write up plans for fire departments of how to get people out of nursing homes effectively. They didn't sort of understand how to get in and out of nursing homes safely without putting those people in additional Jeopardy. Luckily, a lot of that work was done, and then some of the training existed for things like the pandemic and other things like SARS and other illnesses that came through and we had disaster responses, but it's a little things like, you know, how do you behave with somebody who's acting unusual in a supermarket? Right? Most people don't think to themselves, could this person have memory loss? Could I be witnessing somebody who really is harmless and fine, but has memory loss? Is not crazy, right? Is not, it's very hard to, you know, again, people really are so used to seeing physical signs of disease that they can record, that they can recognize, oh, they're limping, right? Oh, they, Oh, they, you know, have a wheelchair. Oh, they have oxygen on. They obviously have a pulmonary problem dementia. You know, it's, can be invisible until you really spend time with somebody and understand what they're going through. So it's very interesting. The other thing that really always inspired me about the arts for dementia in particular and Alzheimer's disease, is that if you think very anatomically about the brain, the portions of the brain that hold the keys for participation in the arts, appreciation of the arts and memory of the arts, for example, music from your youth or song are actually in a different part of the brain right then, then The part that allows people to answer their families questions all day long. And I always say very I always say it very specifically like that, because I need to separate out for folks things that you can do, that this person still has efficacy to do and could potentially enjoy, by the way, and benefit from. We can talk about the benefits of the arts for people with memory loss and a little bit, but that is fundamentally distinct from the part of the brain that is not giving you the answers you want when you ask them 30 questions this afternoon, right? They're very different, right? The ability of somebody to understand your questions. How was your breakfast this morning? What did you have for lunch yesterday? Did you see your daughter, when's your when's your granddaughter's birthday? What's my name? All of these questions everybody is asking all day long, for better or for worse, the parts of the brain that that are not functioning well, that don't give you the answers you want to, that are totally distinct from the parts of the brain that gets somebody. Up singing, dancing and loving their life for an hour in the afternoon, even with moderate dementia. So I try to tell people, this is a this is a wonderful opportunity to work on the parts of the brain that are not the same parts of the brain that are making you frustrated all day because you can't get answers to your questions and people are acting weird. So focus on that part. Focus on that part.

Susie Singer Carter: 25:23

There's a there's one of my mentors is Judy Cornish, who, you know from the Don method, and really makes a great distinction about that. And she talks about the rational mind, which is the mind, the part of your mind that makes decisions, and, you know, makes, you know, executive decisions, right? And then, then there's the emotional side of your brain and speech and speech and speech, right? And so those two are distinctly different, and and so, and she reckons that the emotional side really never leaves like that never gets impaired. And I agree. I saw that with my mom, and she had the disease for 16 years, and i i to the to the day she took, to the moment of her last breath she was there, emotionally, responsibly in with her emotions, very appropriately. And so I did, I did witness that, and I do agree with you. And I mean it, I was told that that art, well, of course, from my mom, who was a singer, that was her cognitive reserve, but, but I was told that art is stored in the hippocampus, which doesn't get affected. Is that true? Or

Marc Rothman: 26:38

it's the opposite? It's the speech and a lot of the logical stuff and processing is largely in the hippocampus, and the emotional pieces are stored elsewhere, the response to color, the response to sound, the risk, the emotional responses are stored elsewhere.

Don Priess: 26:58

So we've heard all for a long time. I think people are too dark for you.

Susie Singer Carter: 27:01

I apologize.

Don Priess: 27:02

Oh, it's very dramatic. It's great. It's fine. The sun went

Susie Singer Carter: 27:06

behind the cloud. I'm sure it'll come out in a minute.

Don Priess: 27:09

It's great. You're fine. So we've heard for a long time, and I think a lot of people know that music is definitely something that you know that that taps in, but now you've explored all different mediums, or you're, you're very and, and are we finding so the visual, the like, what? What are those different mediums? How did you find that? Why? Why they can respond to that too.

Marc Rothman: 27:33

So you know, if you take a step back for a second and you look at what we've learned over the last, let's call it 30 years, about the connection between arts and healing, or arts and medicine. Maybe it's no surprise, but I think it's worth reiterating a little bit the effects of the arts have been shown to be positive on a whole bunch of different ways. Right? So obviously mental health, the arts have been shown to help people with PTSD, to help people with anxiety and depression, to help people out of crisis situations. It's helped people with post traumatic things, even like after being in the ICU and hospitalized. So the connection to mental health in general, both as a treatment and also as a preventative measure. Right to build efficacy confidence has been well shown to demonstrate it. The arts have actually been shown to help medical education. The arts have been shown to increase empathy among medical students, which is something that's very important, because we're healers, and we need to be empathic to the people that we care for. You know, art has very much been shown, and I'm including, you know, music, visual arts, performing arts. I tend to talk about the visual and the performing arts less about books and written material. It's been shown to be great for pain control and for modulating the need for aggressive opiate therapies, right? You can decrease the need for opiates by helping people use the arts to get through their pain crises and improve their quality of life, and you know, and then obviously, in dementia, obviously with children, the arts have been shown to help tremendously in many diseases, in children with coping, as well as with efficacy and confidence. And for dementia, the arts has been shown very nicely, consistently, pretty consistently, to improve mood, to decrease anxiety and depressive symptoms, to improve quality of life for caregivers, to potentially reduce neuropsychological symptoms and the need for strong medications that sometimes get used For those symptoms, and it's actually been shown to improve some short term memory, maybe not permanently, but to improve some verbal fluency and improve some autobiographical memory in people living with dementia, even partially advanced. So you know, it might sound strange for a physician to be talking about. Using the arts in the care and the treatment and the support of people with dementia. But it shouldn't come as much of a surprise to people. So I think that's it's always, it's always worth kind of backing up and reminding ourselves that the arts to your point earlier, like they're everywhere, they're beneficial, and it's actually been studied with research,

Susie Singer Carter: 30:21

right? I think one thing that, just to, you know, double up on that is that, you know, when my mom was, you know, obviously she was, I say, straddling the fence, which is when the movie was taking place. So she knew she had Alzheimer's, but was fighting against it, right? And when she sometimes, she would say to me, I don't know when I get addled I can't think, like, I can't think when I get addled. So which, you know, which is to get, you know, anxious or and when you can't remember something, we all get anxious. How many times have you gone? Oh my god, I just had that. It's like, I oh my god. It's scary. When you can't think of something, it's frustrating, it's scary, it's embarrassing sometimes, and all those things exasperate the the that the manifestation of the disease, right? So when someone is calm, like my mom, when I would give her music, because music was our, was our magic sauce, that was our magic sauce. And I and comedy. I would see her relax. I would see those synapses work of so much better, and to the point when she couldn't even speak. There was, I was doing a dog and pony show for her one day, and out of nowhere, she just said to me, I love you like that. And that was like, to me, that was like she ran a marathon. I've said that before, because at that point it was really difficult for her to get a word out, and so, but she was so relaxed that that it allowed her to whatever it takes. I say, like she looks for the word, finds it, gets it there, puts it on the muscles, and then gets it out. It's a lot when you have Alzheimer's, right? And I think that we need to keep that in mind. And another thing to your point is that making it more difficult on somebody with like arts makes it easier to communicate when it's not easy, you know, it's, it's, it's, it creates a shutdown. It does. It just shuts them down. So like when one thing that Judy taught me was when I would go into my mother's room to see her, when I go to visit, I would never say, hi, mom. Who am I? Or I wouldn't say, Hi. Do you know who I am? I would say, Hi, Mommy. It's Susie, your favorite daughter. I'm here. And then she'd get a big smile on her voice on her face, right? Because she didn't have to think I told her the answer,

Marc Rothman: 32:45

yeah, yeah. 100% 100% and I always think about it also in terms of the, what I call the pervasive isolation and the pervasive sort of loneliness of the dementia journey. And the way I think about it is it's sort of it sort of emanates out, because for the person with dementia, almost every single family that I work with with dementia of any stage, really, even early, their world has already started to shrink inappropriately quickly. And a lot of what I focus on is trying to make sure that we stop that from happening and actually expand the world a little bit again, for everybody's sake. Because what happens is, when the world shrinks, for the person with the disease, I find that for the family around them, or at least for the number one caregiver, which often is someone like yourself, their world starts to shrink too. And so you end up in this sort of weird cycle of shrinkage. And almost every time I get involved with the family, through the work that I do with Lizzie care and I bring the arts in, we can expand that world, right? That world can quickly, quickly enlarge at least a little. And it is amazing the responses that families feel like, Oh, thank God we're back to doing some of these fun things. We haven't painted in a year and a half, we haven't gone hiking in a year and a half. We didn't go drive around in the old model car that dad loves for a year and a half. It's just, you know, it's just been pervasive. The families have been blocking, tackling, dealing and coping every day and trying to get their lives done and take care of whatever they have to take care of, cats, kids, whoever. And, you know, everyone stopped doing fun, activities, exercise, hobbies and the arts are just like a great way to bring somebody, even without skills or training, right? It's just a great way to bring them, sort of back out from the tunnel that they're in, and it's just, it just is so fascinating to watch that happen with families. And so you think about the benefit of treatment through art. And I have colleagues, colleagues of yours and mine, who are determined to get the arts, like, paid for by insurance companies, like they're fighting like tooth and nail. But when you think. About it for a treatment for isolation and for loneliness and boredom. I mean, it's cheap, it's safe and it's effective. I mean, you know, that's a trifecta for a doctor, right? Cheap therapeutics, safe therapeutics and effective therapeutics.

Don Priess: 35:18

I mean, such a benefit. Oh, go. I just wanted to say, such a benefit for the caregiver, because, you know, I, as I watched Susie go in and do her dog and ponies continuously, eventually, and especially if the other person can't, you know, communicate back, it's like, what am I going to talk about? What am I going to say? What can, you know, what is, and it's a big stress on the caregiver, like, what? And it makes them not want to do it is because it's like, oh my God, that's that's a negative thing. So this, it's something you can share. You both enjoy it, and you both enjoy together.

Marc Rothman: 35:53

And if I could double down on that for a second, it actually also, I find affects them sort of the second degree of the circle around families, because if the if the loved one is struggling to have that conversation right, on a daily basis, friends and friends and other distant family, they pull away very early, right? Yep, because, because, because it is hard. I mean, my wife and I, we've taught with grandma Sandy, who's going through Alzheimer's in New York, and we visit frequently. We've taught our kids back to something you said, Susie, we've sort of taught our kids to not be dependent on the conversation when we visit. Let's be dependent on closeness. Let's get really close, right. Let's sit really close and touch right. Let's, let's hum, let's sing a song. Let's let's let her hear us talking to other people without kind of trying to get an answer out of her all the time. And so back to isolation and loneliness. I'm helping to care for a family where a companion was brought in to do some of this with their loved one because they weren't doing it, and the husband actually had was slowed down from some other personal reason, he couldn't really keep up with her. What's interesting is that old friends who hadn't made an appointment to see this person in a really long time, now that they have a companion, they can go see them. So it's just really interesting. So what do they meet? They meet at the museum, right? Like, that's how you know, you just sort of, you build it around the arts, partially because in lots of communities, the arts are free, yeah. And if you think about all these artists that we work with at dementia spring, you know, people like, you know the song Works program, people who are doing things online with dance. You can get a lot of this stuff for free online. They're practically giving it away. And I know it's people feel uncomfortable, but you know, the minute you begin a song, or the minute you begin something colorful and vibrant, or acting a little bit, or playing comedy roles and being goofy, you'd be shocked. People who have memory loss, they jump right in like they're just ready to go. They're

Susie Singer Carter: 38:06

ready definitely. Yeah, I have a quick anecdote. When my mom was at memory care, and there was, we got to know everybody in the facility that were the residents, and they became my family, right? And one woman named Ruth, who didn't talk at all. She had a she had a companion with her. She didn't talk, but she was, you know, always social. She was there, but didn't say a word. And we were singing one day around the table, and we were singing a Beatles song. We were doing harmony, and all of a sudden she starts to sing with us. Out of nowhere, a beautiful voice, and I and her caregiver said, Ruth, you're singing. And she goes, of course, it was so incredible, like I get chills just saying that right now, because I remember that was, you know, I always knew that music worked with my mom, but then I saw it, you know, and and also, to add up to that, it's like, whenever I would go, my daughters are singers too. We'd sing acapella, or we'd put on, you know, an album and sing along to it. Everybody came around, everybody, they loved it,

Marc Rothman: 39:16

right? For sure, yeah, for sure.

Don Priess: 39:19

We'll be right back.

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Susie Singer Carter: 40:19

so in terms of arts, like, I know from my mother, there got to a point where not, not very long into her disease, when it was difficult for her to watch a movie, right? Because, you she's very zen. Like, you know, Alzheimer's is the epitome of Zen. So she couldn't keep the narrative. She couldn't keep the string, the thread at all, and it was frustrating. So half, you know, like, very quickly she'd be off looking around, she's not really watching and and I think it'd be, you know, just becomes a source of frustration. And I see all the time in nursing homes where they just real people into a room with a movie going, and they're no wonder they're asleep because they can't follow it, right? Yes. What do you think we could do about that?

Marc Rothman: 41:09

Well, there's a lot of great programs that are out there. They're all sort of small cottage. They're happening. They're just beautiful things that are happening, usually by the strength of will of the recreation therapist in the building. But there are folks who are doing all kinds of physical, tactile things, with yarn, with thread, with colorful ribbons. There are people who they always have music involved in that, right? They make sure that the music is happening. Some of the more structured programs really have it down right, where it's sort of like we start out with a song, right? We sort of wake up the creative brain. We wake up the creative spirit with a song together, so everyone's sort of singing and getting in the mood. And it's, it's, it's triggering very deep and old memories from childhood, from camping trips, from church, from wherever, those memories are deep down. And we know that people with dementia have the old memories still ingrained there. They can't remember what they had for lunch yesterday. But there's imagery from the very, very remote past that stays inside the brain for a very long time, not always easily accessible, but when you trigger it with a song or with something like that. So programs like that will start out with song, then they'll move into something more tactile, with colors and with shapes, with pens, with things to do on a paper, things that stick to things very, very unstructured, let people do what they can. Usually the successful ones sit people around a table because, even because that socialization, that sort of being together and having activities together, and hearing little bits of laughter and little bits of cajoling, that's actually very social, right? I mean, that's a very social thing most of the time in places like that, they're only put together at tables for eating. So eating is essentially a silent activity. So right. So now you've got activities happening like that, right? Sometimes really, really good programs will also then bring in, potentially a little bit of an intergenerational Conan here. Maybe they'll have children visiting, or they'll have high schoolers come in and sort of just talk and chit chat and just hearing those voices again, even if you can't understand all the words, as long as it's not disturbing, it can actually be sort of enlivening. And then, if often, in these programs, they'll trigger in a little bit of dance. So for those who are not in a wheelchair, who can get up and dance, you'll find often, a lot of times, they'll want to dance now, right? Because the music's still playing. They're having a good time. And so, you know, these programs are tough to run. So I used to work in a very large nursing home organization. These programs are hard to run. They cost more money than a lot of people want to spend. Right? A lot of times they're making tough choices around beds versus, you know, fixing the roof versus staffing, which is a very tough challenge. In general program, money for these programs is just sort of hard to come by, and it is very difficult. I, you know, I spent a lot of time in nursing homes, and I've seen beauty there that is just tremendous. I've seen human beauty in people and relationships that just knock you off your feet. But I've also seen a lot of loneliness, isolation and boredom, and it is very, very hard to push back on that I'm empathetic.

Susie Singer Carter: 44:29

Yeah, that leads to failure to thrive. We saw that easily, easily in the pandemic. That's what it you know, I always repeat this number, because 200,000 residents that shouldn't have died during the pandemic died from failure to thrive, and that's from being isolated. Isolation is a killer. It is. It's one of anybody would be. None of us want to be isolated. That's why they put, you know, criminals and yeah,

Don Priess: 44:56

solitary confinement as the ultimate. That's the ultimate torture. Her is put them alone. And that's what we're doing. Babies,

Susie Singer Carter: 45:04

animals don't thrive. Nobody thrives. Don't thrive by themselves. I mean, we living things, need living things, right? It's true. It's really true. So and it really breaks my heart that, you know, and it's why I'm do. We're doing No Country for Old people our documentary, because to hear you say that there isn't enough money to, you know, have these programs that are that are vital to life, because they are life. You know, life is not just getting medicine and eating. That is not the extent of a life. So so that, if you're going to call yourself a nursing home and not in a nursing institution, then you need to provide those kinds of an access to that kind of of life, right? That that that that portion of life which is stimulation and and, you know, happiness and art, all that stuff, so, entertainment, recreation and so, and there is enough money mark, there is enough money. Definitely

Marc Rothman: 46:08

out there. There's no question, you know. And I've, and I've seen it, and I've seen it done really well, but it's, it's often intermittent, right? It's not as regular as it needs to be. It's not as structured as it should be. It doesn't always have the best leader leading it. So, you know, it's tough to it's tough to make it work. One of the projects that we funded at dementia spring is the day by day project out of Columbus, Ohio, which essentially is a silent disco dance arts engagement tool that they've brought into assisted livings and nursing homes. Now, pretty much across Ohio. They've really succeeded. We funded them with a grant three years ago, and they've had a great, great run. They got funding from a local county to put their innovations into every single nursing home in the county. So in these nursing homes, you have people who are wearing silent disco technology. One of the things that's so important about silent disco, I don't know if you guys are silent disco

Susie Singer Carter: 47:03

. People tell it. Tell us what that is.

Marc Rothman: 47:06

So the silent the so the silent discos are you've seen. You might have seen these at fundraisers or the benefits or at parties. It's where it's a it's a dance. It's a club, right? It's a disco. But instead of hearing the music out in the room, which is what you're used to. When you walk into a room for a disco, every single person is wearing headphones and the music is playing only for them.

Susie Singer Carter: 47:30

I've never heard of this. Okay,

Marc Rothman: 47:32

it's very cool. Teenagers know all about it. Any teenagers who are watching your podcast are rolling their eyes right now.

Susie Singer Carter: 47:37

Okay, sorry. We

Marc Rothman: 47:39

apologize. We apologize that we're catching up to technology in the real world. So thank you. Thank you for teaching us. We appreciate you. We're grateful for you.

Susie Singer Carter: 47:47

Yes, grateful for you. But

Marc Rothman: 47:49

it's, it's great. It does two or three things. One of the things is it makes the room less loud and crazy, right? Cacophonous because there's no music playing out anything. It also lets different channels be programmed so that some people in the room can be listening to a different song than the other people in the room, but they're all still dancing. It's brilliant, which is brilliant. So if you need to program some 40s tunes versus some Beatles tunes, right, you can do that, right? Some people like Frank, some people like, you know, John Lennon, so you know, so you can have them in the same room. If you knew their tastes, you could give them headphones, and they'd hear their music, not what everyone's hearing. Not everyone in the room is hearing the same music. But what's most important in my mind, from the medical standpoint and the physiology standpoint, is that a lot of the problem for people with Alzheimer's disease on the listening side, is that the streams are always getting crossed. Right? Think about a room at a Christmas party, there's too many voices. Think about a time you went to a restaurant. Sure, it's not necessarily the volume, it's that there's too many inputs, right? There's words coming from over here, there's words coming from over there, there's there's someone behind you talking, and you and I have the ability to mostly filter that out and decide who we're going to pay attention to. People with Alzheimer's don't have that ability. They've lost the ability to filter and to prioritize, and so it all just becomes this cacophonous stew of sound that they're supposed to respond to. It's hard to know. The beauty of the silent disco is it isolates. That's the only noise they hear. Is that song.

Susie Singer Carter: 49:30

I love that so much. I

Don Priess: 49:32

love it so perfect,

Marc Rothman: 49:34

so perfect. Even if you're in a room full of people trying to sing songs, you know an alarm is going off down in bed. Number three, there's a siren outside, like there was in your podcast. You know, there's all kinds of noises. Someone's over the loudspeaker. You know, we need somebody in room. There's two and there's people next to them making noise. But with the with the headsets on, it's pure. It's pure. It's very much like the image and video you've also. Scene of Music and Memory. Those first, those first patients in the Music and Memory program, where they put the headphones on the person sitting in the wheelchair, and they started

Susie Singer Carter: 50:10

Alive inside alive.

Marc Rothman: 50:13

So picture that writ large and just magnified with a little piece of technology. It's great. And they have a whole program that you can you can sort of selectively make a playlist for them. You get to get to know about their lives, get to know when they grew up, get to know what music they liked, program it in. And then you've got the whole place dancing. They bring maracas, they bring Cha Chas, they bring tambourines.

Susie Singer Carter: 50:39

Video, I want to see video. And by the way, I've danced with people in nursing homes. I've danced with them in wheelchairs. So when they want to move, they want to dance with them. Yeah.

Marc Rothman: 50:52

So that's it. That's a great example. That's a great example of project.

Susie Singer Carter: 50:55

I love it so much.

Marc Rothman: 50:57

Check it out. So

Don Priess: 50:57

how do we, how do we, you know, it feels like the only way we get this into, you know, wide out there, into all the facilities and everything, is to somehow show how this is going to either save or make them money. That's, that's the the only way. It's difficult, but it is difficult. Can you show? I mean, I'm sure you can show. Wait, if you do this, then all of these costs go away there or they, you know, they are, they are, you know, it looks like in the long run, this will actually be beneficial to you as an organization. Can you do that? Is it something you're trying to do right now?

Marc Rothman: 51:34

Well, I'm not focused on that particular segment today. There is good evidence for it. The trick is you have to have somebody who really believes it and wants to put it into play. You know, you need leaders to believe that not only will they have less behavioral disturbance, but they'll use less medicines to control those behavioral disturbances, which is better for the patients, because we know they come with black box warnings that you know they can be dangerous, if not if overused, but they also can save on that expense. Then also from the staffing side, the people who are taking care of those loved ones in those facilities, if the patients are having less behavioral problems and have better moods and less anxiety and less depression, their job becomes easier. So it actually helps you around the entire sort of horn of the entire facility. It's really a cultural shift in my mind that people need to latch on to, which is to say that we're going to be an institution that delivers the arts in a big way, right? We're going to we're going to hang our hat on this, and we're going to fund it, and we're going to do it right? It's just, it's hard to find folks out there in the community who are trying to run their businesses, who will adopt that writ large, right? It's easier to go try to save money on a better toilet paper contract than it is on arts therapy. And we're trying to dispel the myth that it's overly complex or that you can't find it anywhere. There's so much good programming happening all around the country, actually, in little pockets. You just got to find it and bring it in and welcome it. It

Don Priess: 53:07

seems like the big step would be to the peak, to the to the owners of these institutions who are employing this to talk to the other ones and saying, guess what, guys, I'm doing this. Everyone's happier, and I just saved, you know, blank, amount of money every month by using this that's, that's the way it's going to happen. Because, you know, we can demand it, but until they hear from somebody who's actually doing it,

Marc Rothman: 53:33

and it's starting, yeah, it's starting to happen. It's starting to percolate. I mean, that's part of why dementia spring exists, right? Which is to show that these things can happen, that they're not incredibly expensive, and that you can latch onto. I also always feel like, if that's part of your story in your community, people are really going to like that in your community, right? People are going to want to be part of that, right? Your staff, people are going to want to be part of that. I always view things through the lens of, how do we retain our best people. You make their environment to work in fun and lovely and purposeful and meaningful, and you pay them well, obviously, of course, but you bring that in, and all of a sudden the place that they're working becomes fundamentally transformed,

Susie Singer Carter: 54:14

yeah, and can And absolutely, I think what, what's important that also to piggyback on Don what he was saying about show, you know, showing, like, quantifying what, what arts actually do, in terms of, you know, from your perspective, and because you are such an advocate for it, that it's going to take you know, the community at large, the collective, to say to the people that hold the purse strings, which is cms. And you know that's me saying CMS. You're not looking at what's important for these quality of life, for quality of life, we're not just talking about quantity. We're talking about quality. So I think that that's what we're that's my goal, is to make that shift. To educate what you're doing educate everybody to say, Oh, of course, these people deserve this kind of life. It's not, we're not just keeping them alive, you know, in a bed that they need a full, you know, full scope of life and that. And that comes down to CMS, who writes the checks to these facilities. So CMS needs to step up and re, re evaluate what our priorities, staffing one of them, paying people to want to work there in and give them benefits and make the environment, you know, attractive, like you just said, to want to go to work, to look forward to it, because consistency, as you know, as a doctor, consistency and care, you know, especially in Alzheimer's and dementia, is is paramount, right?

Marc Rothman: 55:50

Yes, yes. And CMS is actually recently taken a really important step in trying to address some of the needs of patients and families dealing with dementia, especially at home, they've established a new model of care where they're going to finally sort of pay for some of the care management and navigation type services that my organization, Lizzie care, does, and of course, in my practice, we've always done but CMS is finally going to start paying for folks who have expertise In dementia and what the journey looks like to counsel families like yours over time. The truth is that today, you can go to primary care a lot, but they don't have all the resources to help you on your dementia journey. Right, right? Neurologists also are very helpful, yes, but they don't have all the tools necessary to help you on your dementia journey. And the truth is, there is expertise out there, but it has often been underfunded, and there's not a lot of there's not a lot. I mean, there's no I'm a geriatrician. There's only 5000 of us in the entire country,

Susie Singer Carter: 56:52

and it's getting less, from what I've heard, people are getting lovely. Yeah, I remember one day. I remember one day a doctor, my mom, my stepdad was having surgery. My mom was in the throes of Alzheimer's, and kept wanting to ask the doctor, as he walked by, how is George? How is George? How? And he walked up to me later on and went, do you need, do you need a prescription to Valium? I'm just asking to me. I don't know if it was a joke or what, but it was like it was, it really highlighted the fact that he clear, you know, he represented a part of our, you know, community that doesn't understand it, and that, you know, we it's not going to go away. If I take a Valium, it's not going to change Mom, that's

Marc Rothman: 57:33

right. So, you know, learning, learning how to cope. You know, for so many families like you, you're, you're at home, you're, you're living the journey. You're doing the blocking and tackling, like I said, but you're largely on your own spending for yourselves and trying to navigate the maze of dementia care in our country. And I fundamentally don't like that. I think that needs to change. And luckily, CMS has now started to pay for some of those services, not a ton, but it's a great thing to start it is, it is it's a new model of care. It's called a value based care model, and it's like the work that we do at Lizzie care, which is trying to stay very close with families like yours and say, Where are you on the journey? And how can we help you anticipate what's coming? How can we help get ahead of the crisis, before the crisis happens. So you don't have to go to the emergency room and get offered Valium, so you don't have to have a so you don't have so you don't have to place somebody in a nursing home quickly out of a crisis where you can't a lot of the things that happen to people along the dementia journey are a little bit predictable, actually. And for people like me who have expertise in this, I can usually see those crises long before they happen. And

Susie Singer Carter: 58:44

so gem Mark, you're such a gem. So

Marc Rothman: 58:47

now, you know, now we've, we've put together a whole team at Lizzie care, who essentially helps families just by being tight with them for the journey. And when we see that something needs to change so that we can avoid a crisis, or we see that the world has shrunk too much, and it's time to put a companion in with your loved one, or we see that it's time to have a conversation about maybe not being at home anymore. Maybe it's gotten a little too complex. Either way, you get the benefit of, you know, expertise, patience, a trust factor that's not always there when you're in crisis and people are poking themselves in and out, trying to help you through the crisis. So it's really great. I think CMS is kind of, you know, it's a it's a innovation program, so it's called a pilot. But I think they're beginning to tip toe themselves into the dementia situation in America, seeing how many people are dealing with it today, and how the new medications are going to put pressure on CMS to help more than they ever have before. They've mostly left it to families and to Medicaid to deal with the reality is they're going to have to get a little more proactive, and this program is designed to do that, so we're pretty excited about

Don Priess: 59:54

it. And is this program? Is it A, available everywhere and B, is there a cost to it? How does that. All work.

Marc Rothman: 1:00:01

So it's for people who have a diagnosis of dementia. It's not available everywhere. You kind of have to find those practices and organizations that have gotten themselves sort of certified and credentialed in the program, were called participants in the program. And as long as you can find one of them, you can look it up on the internet, on cms. The program is called guide, G, U, I, d, e. It stands for guiding some kind of improved experience and dementia. And you can figure out if there are guide providers in your area and see if you can get connected. Some of them are already big medical centers. So the big medical center that some people have already started going to right? Maybe there's a dementia Research Center at the University. They might have applied for the guide model. So they're probably already doing the work for you, for families, but at least now they get a funding source, and they can expand their programming to bring on more coaches for families to give coaching. They can bring on more care managers to help navigate the journey and find resources for you. Instead of telling you to go find resources for yourself, they're a little bit of a focus on medication management, because we know that in people with dementia, the risk of polypharmacy, taking too many medicines that are interacting with each other is a big risk. And there is some money actually set aside for respite services. It's not a lot. It's not a lot per year. But you know, if there's a weekend that someone needs to get away, or there's a surgery that somebody needs to go to, there's an opportunity to have Medicare pay for some of that respite service through the model. The model just started a few months ago. Our organization goes live on it in the spring, so it's, you know, it's going to be a bit of a slow roll out, but it's coming. And it definitely represents a, it represents a, an important step by Medicare, in my mind, into all

Susie Singer Carter: 1:01:50

good shift. That's really good to know. That's very, very, that's very good to know. Yeah, it's encouraging because I've been saying that, you know, for so long, we've been saying, you know, it's it, it we can't control bad players that, you know, we can't. So we have to, we have to have to create it. We have to create how it has to be, and then that, and then they have to back into it. So they have to back into the way it is, so that we can avoid the kind of, you know, lonely lives that you're talking about, you know, very small lives that don't have to be that small yet. So I think you're an incredible human and appreciate you so much. I mean, I, I'm, I'm so much more impressed with you. I had no idea what to expect. And like you're, you have so much to offer and so and your compassion is just beautiful. And, oh no, I, I, it's very moving for me. I just love what you're doing. And your Lizzy care is, is just awesome. I mean, it should be everywhere. And how you support the arts is just, you know, phenomenal, because it America sucks about when it comes to supporting the arts. You know, almost every other country has, you know, all kinds of funding earmarks for arts, and we have zero, you know, we are on our own. So you know it's God bless you for doing this, for other artists to get their beautiful work out there. And you know we're all grateful to you. Thank you. Thanks.

Marc Rothman: 1:03:39

I appreciate that. I'm grateful for you. What you guys are doing, I mean, you are you're bridging the gap for people, and you're making Alzheimer's, you know, understandable for people, and you're sharing your story. And that's so much of what dementia spring is trying to do, whether it's you know, Sam Simon and his play dementia man, where he tells you how he's grappling he has a diagnosis of dementia, by the way, he is performing one of the only perform performers that we know of who has Alzheimer's disease and is on stage on a regular basis. We're looking for others. If you find others, let us know. But when I'm on the phone with Sam, when I'm on the phone with Sam, he always says, I might be the only one. I'm not sure.

Susie Singer Carter: 1:04:18

You know, it's also like Greg O'Brien. You know you're familiar with Greg O'Brien that wrote on Mars and and we go, I had the honor to interview him on our show, and he just blew me away, because he's been living with Alzheimer's for a very long time. His his cognitive reserve is his journalistic acumen, right? And so I was like, how is he remembering all this. But he said to me, Susie, I write everything down immediately. I write it all down and I just think it these kinds of people. You said, like, like, what is his name? That do? It does the one man show, Sam, Simon. Sam. Simon, which I have to see that show. I've heard about it. And Greg O'Brien, these are, these are. Give gifts to all of us to get inside what it's like to to live in this journey. Live underlined.

Marc Rothman: 1:05:09

Yes, you know, one of the things that I also love about the arts piece, I'll reference another organization. We work with, Fauci Jimenez and the what's the oye group in Brooklyn. They have a project called Mercedes, which we latched on to. We love the Mercedes project, and he's going to be performing at the Brooklyn Academy of Music with the Mercedes program, including some virtual reality about living with dementia, seeing things through Mercedes life. One of the nice things about the arts, I find is that it really also lets us reach other communities that are harder to reach when all you've got is sort of white coat, you know, institutional, you know, university programming. It reaches the people who like that. But for a lot of communities, whether it's an immigrant community or Hispanic community, or whether it's, you know, think of a million communities, yeah, anything, the gay and lesbian community, whatever it is, the arts are a great way to get in there and kind of meet them on their own playing field, right, meet them where they are right, and do that through the arts. And so, you know, I just love the collaboration between a physician and a poet to try to bring you know, story, storytelling and resources. So we wrote, we wrote the resource guide for the events that he's doing. We made sure it was both in English and in Spanish, and really down to the local level for the communities that he's in. Those are just beautiful collaborations that I just, you know, I feel like getting, bringing, bringing, bringing up a little bit that I have to share and know about the science and about the medical, medicine and about the disease, combining that together with the creative spirits and juices of all the people who want to tell these stories, it's just been a very powerful concoction. And you know, I feel like I'm, I feel like I'm, I'm able to communicate with a far bigger audience and a far broader set of people who need help than I would have been otherwise. And

Susie Singer Carter: 1:07:08

I just want to say, just to add on to that, is that when I thought about doing my mom and the girl and people had said, because I would tell the story at a party because it has your mom, and I tell the story because it's all true, right? They'd go, Oh, my God, you need to do a short film on that. And I'd say, Oh, I don't know, there's so many Alzheimer's who this is the world needs, is another Alzheimer's movie, right? And a short who's gonna see it? Dada, dada. And, you know, at the end of the day, I thought, you know, I ruminated on I thought, it is pretty extraordinary, these three disparate people from, you know, LGBTQ and and, you know, Latina and a Jewish mom from from New Jersey, getting and really affecting each other. And so, Donald, yeah, Donald, tell you like when we released it, and we were all over the world at all these film festivals, and we were blown away by how many people it affected, from teenagers to elders, and we just screened it again at Belmont Village, here in Los Angeles, which is a assisted living, what with residents and their family members, and the residents loved it and were so engaged with the conversation after and they said this needs to be shown every year to everybody, because they because it made them feel okay,

Marc Rothman: 1:08:30

yeah, yeah, you know. And

Don Priess: 1:08:32

it's, yeah, oh, go ahead. No, I was just gonna say it's, it was when we did, we said, Who's this is so specific. How is anyone gonna relate to this. And what we found is that specificity was the universal language that everyone can share in, even though it's not exactly the same. Yeah, it they everyone got it. We were shocked. We had no

Susie Singer Carter: 1:08:54

I meant to say the button is, tell your story. Don't think that it's not valuable. Everybody's story is valuable everybody's and the more stories we tell, the more we will dilute the bias and right and the ages and the ableism and all those things that we have a really ingrained in our in our in our public, in our society, that we can counter it with storytelling

Don Priess: 1:09:20

and get rid of the fear. And so the because the fear of it is something that that everyone, whether you have it or you you don't, lives with, and make it so less fearful. I think that's and that's what you're doing.

Marc Rothman: 1:09:34

You know, when I go back to the what we talked about earlier, which is that I think we talked about it earlier. I've had a lot of meetings today in conversations today, but I thought we talked about it. So, you know, less than half, or about half of the people who have early stage dementia have a diagnosis today. So that's that's not good, less than 10% of people who have mild cognitive impairment, which often precedes dementia. And for. Which you can now receive drugs if you have a diagnosis. Less than 10% of those people have a diagnosis, but they are experiencing the disease, and the fact that they are sort of not doing it publicly means that they are alone and they don't get the chance to see themselves in the arts and in on screen and in dance and in music, and it's and so when, when our leader Hall in Chicago, who we gave a grant to, creates a comedy about using improv to deal with dementia and laughter, you see yourself when people like Sam talk about what it's like to get a diagnosis and to go home and tell your wife about that, and to decide whether to take a trip or not, or whether to even do this play you see yourself in it, even if you haven't acknowledged the disease to yourself, or if no doctor has told You that You have the diagnosis. So I often feel like we talked about wheelchairs and nursing homes on one side of the spectrum. On the other side of the spectrum is a partially hidden, secret and almost unrecognized world of people who have the symptoms but don't have the diagnosis, but they are experiencing it and they feel it internally. So, you know, I almost call this population underserved, right? Because without the diagnoses, they can't get the treatments. Without the diagnoses, they can't get the care managers and the navigation help. And so how do we find them? How do we bring things to them, to solve problems, and how do we show them that other people have lived this journey before? And how do we get them to be able to look out and recognize themselves in popular culture, whether that's a dance, a song, you know, just all the all these things, and embrace it, you would do so much for them. But um, again, it's the artists who have to do it, the doctor. And also,

Susie Singer Carter: 1:12:04

I think that there's other films that have been out there that that I also, you know, did a disservice by being this is, and in the past, not recently, I've said there's been some that that actually perpetuated fear. So it'd be, you know, so it only showed the negative side. I have a big problem with that, and I don't, yeah, and I've said that so many times, and I'm very unpopular when it comes to one movie, because, and I'll say it, I don't care, Still Alice, I think did a disservice. I don't, I know the people that did it, and I'm sorry. I respect you, but, you know, when I've swatched it, I was like, that's not how it rolls out. It doesn't that's wrong,

Marc Rothman: 1:12:45

right? And you miss a lot of the doom and gloom. We talk about this a lot in some of our panels that we did a festival this past spring in New York, and we had panels we talked about this topic, right, which is the doom and gloom narrative, right? And people can't stand it. They find it pervasive, and they call it the tragedy narrative. But there is laughter along the way, there is joy, there is love, there is sharing, there is silly trips, there are wacky moments, there's dramatic moments. Sometimes, yeah, a lot of it's sort of a very silent, you know, doom and gloom narrative. One of the things that I try to do when we give grants to folks, a lot of them are in, you know, pre production on whatever their project is, whether it's dance or music or some I try to work with them a little bit on avoiding cliche, because otherwise you just sort of end up like, Oh, I'm going to make a move about Alzheimer's Great. I'll have the person get lost, and then I'll have the person like, have the keys taken away, and then I'll have them leave the stove on, and then I'll have them, you know, I'll have, you know, I'm just like, okay, but like, what about the rest of life? There are things between, yeah. So trying to get out of the cliche, a little bit exploitative,

Susie Singer Carter: 1:14:00

the exploitative side too, that I found, I found that too when I was working with the Alzheimer's Los Angeles here, because I was working with them very closely, and they would say, you know, would you take a look at this film? Because we want to think, should we get behind it? And there was many films that, especially documentaries that were very exploitive, exploitative of their family member and to and it's really, you know, sort of, you know, looking at the the accident on the road, you know, just like, here's horrible things that happen, that they

Don Priess: 1:14:34

focus and magnify the indignities. Yeah, they focus and magnify the indignities. And, you know to show, oh, when you have this, you have no more dignity. And

Susie Singer Carter: 1:14:44

it hurts my soul to watch those things. So I would say no, no to certain things like that. Because I said no, I don't want that perpetuated by the way people that have cancer, people that have you know, MS, all, we all suffer in dignities, but those are private. We don't need to share those. Yes, that's, you know, that's not for that. That doesn't make or break you as a human being, and doesn't define you as a human being, right? Do you agree? Yeah,

Marc Rothman: 1:15:10

it's very we talk about this a lot, too. When I get artists together and we do panel discussions about this, is sort of, what is the proper amount of exposure to essentially decide that someone with memory loss, who may not be able to decide for themselves whether they want that level of exposure, how much is appropriate to do or not do. I think, I think before social media, there was a lot of thoughtful conversation about this, right? I think people really wrestled with whether it was okay to take photographs. I mean, you know, I've got, I've got many photo photographers, and we work with the Bob and Diane fund. Oh, yeah. People take photographs of people with dementia, which I think is fine. And sometimes those photographs are very personal and but sometimes they are showing how personal a journey it is, and I appreciate that, but that person may not have given consent. They gave passive consent. They obviously love you, and they've probably watched you be a photographer your whole life, and you've probably been photographing them your whole life, but they didn't give permission for you to publish it, and, you know, put it out there, but they trusted you for everything, and you've made the decision to do it, to communicate something, to collaborate. A lot of artists, when they talk to me about using the subject, the person with dementia, as the subject, they talk about as a collaboration from the artistic side, like I've had artists say to me when my mom and I were they would say, my mom and I collaborated on that project. And I remember the day the collaboration was born, something happened. There was a magic and they said that was the collaboration, and I've chosen to share that with the world, even though it shows mom in some compromising situations that you and I might not really want to share. I think there was a lot of thoughtful discussion about this, and what are the limits to that, and how far you can push it or not push it every conversation with social media, it's tough, right? I mean, you know, the world is so permissive about imagery now that you know, most of us with phones are generating at least five or six pictures a day on something, whether that's the sunset on the ride home, or a selfie with your cousin or, you know, the I got something leaking from the heating duck, I photographed it and sent it to my wife like, you know, it's just everyone's taking pictures of everything now. And I don't know what the right balance is, but I agree with you in situations where it seems oddly exploitative or oddly just embarrassing to a extent that was unnecessary. I don't know that that. I don't know that that act robs them of dig one. When I talk about dignity, I'm usually talking about, how do we preserve someone's dignity, personally amongst us, right? How do, how does the day to day for this person feel? How do their experiences feel minute to minute? I'm a little when I talk about dignity, I'm not so much talking about whether or not their underwear got put on social media or not, you know, but it's an issue. It's a hard issue, and it's been made more complicated now by the ease with which people can create imagery and stick it wherever they want. I

Don Priess: 1:18:21

think that when, when there's no, yeah, when there's no takeaway from it, meaning that, here's the indignity and all your it's just to show how bad it is, that's it. There's no There's no lesson, there's no knowledge, there's no you don't take anything away from it. If you can then take that indignity and say, okay, and learn something from it, or enlightened, then I think that's where the conversation hopefully would go to, you know, as opposed to just, this is bad. Look how terrible this is. Yeah, it

Susie Singer Carter: 1:18:55

becomes, it's, it's like, click fade, or it's like, you know, any movie, if it's, if you're gonna do a sex scene in a movie, is it, does it serve the story, or is it just porn? You know? Are we just like, You know what I mean? Does it serve the story to to have this love making in which often it does, but oftentimes you're like, Okay, we got it. They're making love. We get it. We know how to do this, you know? And it's like, not that I'm a prude. I'm not. It's just that, you know, I don't really care, you know. And also, to see somebody you know in a compromised situation when they're when they have Alzheimer's, you know, maybe with their hygiene, or whatever this case may be, you don't need to focus on it that long people will get it. And so it becomes, that's when I those are things that I think do want, you know, really deserve a conversation, and we should keep that going. Because I, you know, look at, I'm doing a documentary based on nursing home, you know, abuse and neglect, and I, and I have to be very considerate about how we present it, and in the. Is a fine line. So, yeah, anyway, this has been great. We're talking forever. I told you guys, thank you, yeah, yeah, wow. So okay, well, really appreciate you and love what you're doing. We are all about love. We we are we're doing this because we care and love, and that's the only reason why we're doing this,

Don Priess: 1:20:21

and that's because love is powerful, love is contagious, and love conquers all. We thank everybody for watching listening today, please, we'll put up all of Dr Mark's information about everything that he's doing, and please like us and subscribe and do all those fun things, and we'll be seeing you next time.

Susie Singer Carter: 1:20:42

Yeah, everyone, be good. Have fun and be grateful

Don Priess: 1:20:46

Absolutely you guys. Take care. Everyone

Susie Singer Carter: 1:20:48

having us, bye, bye.