Global Brain Health & Keys Bags Names Words documentary

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All right, well, thank you for joining for this episode of Ask Dr. Mia podcast. Today I have Caroline Piroleau who is joining us from University of California in San Francisco. I'm going to let Caroline introduce herself. Hi, I'm a writer and designer with the UCSF Memory and Aging Center and on the communications team for the Global Brain Health Institute and where I do a lot of writing and communications work and storytelling. Excellent. Yeah, can you tell us a little bit about the Global Brain Health Institute? And I know you also lead an oral history project called Hear Say and just kind of the impact of personal stories. And the global brain health institute or otherwise known as GBHI has a mission to sort of reduce the impact, the international impact of dementia. So really looking at brain health, preventing dementia, as well as more accurate, more accurate and earlier diagnosis, as well as management of dementia and really in communities and cultures around the world. So part of its approach, it's based at both Trinity college, Dublin and UCSF and brings about, oh, 20 to 30 fellows in at each site each year for this intensive residential program where they spend a year studying brain health, economics, neurology, neuroscience, neuropsychology, arts and creativity and policy. They bring all these things together and they're people from all different, there's MDs and PhDs, scientific PhDs, as well as policy, as well as artists. So they're really people from all different backgrounds, all motivated by this desire to change their communities. And they come together for a year to sort of incubate together. Then they go back to their countries and it's wonderful. They create these networks of fellows around the world. They're connected as part of seven large Atlantic Institute programs, which are Atlantic fellows for equity and all different areas around the world. And so these really large collaborative networks get created and it's, it's really exciting. We've been going about seven or eight years now, and it's really fun to watch these networks grow and see the work that's starting to happen in communities that are changing and embracing. as I said, things that may improve diagnostics, but also quality of life and connection and living well with the diagnosis. And that's been exciting to see that it is doable. Absolutely. And I think it's particularly important to kind of include the narrative part of what people are experiencing. Can you tell us a little bit more about the oral history project and kind of the stories that you guys are collecting or working on? So the Hear Say project started in 2016 originally. It was a collaboration with Voice of Witness, who the Memory and Aging Center has an artist and residence program. And the Voice of Witness came in as our artist and residence. And so they're a social justice storytelling group based in San Francisco. And they came and trained us to work on how to do empathic storytelling. So how to do the empathic interview and really consent-driven, narrator-driven stories. And then we edit the stories in... was sort of a literary mold, so there's a little more freedom. It's not, we do a word for word transcription, but then we edit it into a story, and then we share these stories, and with the narrator's consent, but the goal is to share these beyond the academic walls and get the stories out there into the world. And so then we created a book of stories, and we did what's called a Reader's Theater, where we read, sort of did a live staged reading of these stories and just short clips from them. And Afterwards, we were so excited and there was so much good energy from hearing these stories and the range of stories. That's the other goal of it is this, you know, caregiving is such a multifaceted experience from pride to love to anger to frustration to humor to, so we really wanted to compass that wide range. And so after sharing, oh, I guess maybe 10 or 15 in this Reader's Theatre, people afterwards said, oh, the stories are so profound, you need to make a film. And Then it turned into, we started another project, started in 2018 to build this into the curriculum for GBHI. So now storytelling is part of the annual curriculum. It's an elective, but it's part of the curriculum. And we created a documentary film called Keys Bags Names Words, which is just premiered this week in the US. And so... That's very exciting, yeah. yeah. So it's been amazing. And a lot of the fellows have really enjoyed it in the curriculum because either they're scientists who come with the, or medical people who come with a practice of you have specific questions you need to ask and specific answers you need to get. And there's a click, you know, they're important interviews, but it's, you're not looking for these broad open ended questions, whereas the style we take is leaving it wide open for someone to run with a story and seeing where it goes and letting them tell their story and their viewpoint. And you're not necessarily fact checking it, maybe if there's a date or something, you might fact check that, but it's their story and their impression of their story. And often it's interesting if you talk to someone with a diagnosis and their care partner, it might be the same story told two different ways and both are valid. It's their experience of what happened. It's been such a beautiful experience. You can't leave an interview like that without being touched by the other person and their expression of what they've gone through. Whether as I said, whether it's positive, sad or funny or whatever, it's always powerful and it's been one of the best things I've done in my life, I will say that. Yeah, and I think that's really the humanity part of dementia care or memory work. It's that the stories are really what I know inspired me into going into this field. And certainly, I think it's great that it's being more integrated and valued as part of that scientific curriculum. But maybe for the audience who are more clinicians, you know, ideas that you have in terms of getting, you know, the more rational, logical part of us to be open to, you know, the more narrative and personal nature of bringing out people's stories and why that's important to even think about it that way. I mean, for us, we do it partly for education and partly for empowerment. But even if you just take it in at a practical level, if you spend a few minutes, say maybe 10 minutes during a clinical visit, being open-ended to letting the person tell you about what's going on with them, you'll learn so much more that can affect the care plan and help you understand what their decisions are. Maybe you're stuck, they want some kind of care and you think it should be a different kind of care. Sometimes understanding, hearing them talk and hear them explain maybe what their values are, their experiences are. you start to understand what they're coming for and you see how to work together as a team. And I think that, I mean, I've talked to a lot of the nurses and doctors who have done the interviews and it helps them connect with their patients more. And if nothing else, it builds trust and just understanding between each other. But even just really practical things like, why do they wanna do this instead of what I want them to do over here? And when you understand that, then you can probably both meet and find the path that works, that is both therapeutic and helpful, but also in line with. their values and what they place importance on. And I think even just a few minutes, in these days where everything is so fast and so short, attention's, it's wonderful to give someone a few minutes to express what's powerful and meaningful to them. So even just that, I think, will make the care better. And I think a lot of caregivers are overwhelmed with the work they do, which is beautiful, amazing work, but it's exhausting. And it can be, you're giving so much and to be seen for a few minutes and to be seen as you with your own. strengths and weaknesses and frustrations, that does a lot to build their empowerment and their sense of self and help them be more resilient and give more. So I think it's powerful all the way around, whether it's a practical thing or whether it's a more philosophical value-based thing. Yeah, yeah. So tell us more about keys, bags, names, and words than the title of the title of the movie or documentary. And I know it's a documentary about people with Alzheimer's disease and other dementias. And the goal is to, you know, inspire folks in action in aging and brain health. Yeah, so this film really came out of, as I said, that first Reader's Theatre we did where people are like, oh, we need to hear these stories. And so we talked to a number of people, people with diagnosis, care partners, and then also this group, this cohort of Atlantic fellows who are just doing really interesting dynamic work around the world. And we sort of started talking to people like, okay, what are we going to do here? What's the story that's going to come out of this? And so we ended up following a number of people and sharing their stories in this film. I would say the real messages that come out of the film are there's things you can do to take care of your brain health before you have a diagnosis. So to hopefully delay any onset, maybe even prevent an onset, but certainly to live well for as long as you can. And so those are the sort of things, reducing those risk factors of, you know, getting exercise, reading, staying mentally engaged, staying socially engaged, eating well, reducing your stress, watching your blood pressure, things like that, taking care of diabetes or depression. And those are things you can do at any age. And so the better health you have going into your older years, the better off you'll be. And then, sorry, I lost my train of thought there. What were we talking about? How the movie came to be. And then, yeah, and so then the other part was then looking at once you have diagnosis, I mean, obviously nobody wants to gain to develop dementia. It's a tragic thing. But there are beautiful moments and there are moments where you can connect as a family. You can have these powerful times. And it's not all, I feel like there's so much tragedies around dementia and yes, I wouldn't wish it on anyone. I do think it is, you know, we have to, our economies have to be prepared. Our families have to be prepared. There's, it's a terrible thing, but there are moments that can be beautiful and the person is still there. You can still connect with them. You can still forge a bond. It's going to be different. The person's different, but they're still there. And I think the arts is really the powerful way of finding the way into the person. Cause maybe, maybe they've lost language. Maybe they have an aphasia. And if you can't connect with them in the same way as you always did, maybe you used to discuss, you know, literature or politics or something very cerebral. And maybe that's not there anymore, but maybe you can still connect through touch or dance or song or something like that. Our visual through painting. And I. It's just powerful, but it's different. And I think people just need to be a little more relaxed and more open to go with what's in the moment. And I hate to say letting go of who they were, but letting go of your expectations of who they were and letting them be who they are. And then you'll find them there again. yeah, absolutely. And I think we are very, very tied to our identity as very, a lot of us, very cerebral people. And the things that we do in many ways define us. But when a disease like dementia touches on the person, a lot of what we used to do or the work that we used to do kind of falls away. But I think you're exactly right in the sense that the person is still there and the person with the disease is still valuable and wants engagement and community and communication. It's just that the way of communication may need to be different. So where can people watch the movie? Well, right now, so we have a screening. We just screened in New York last night. We have a screening in Berkeley on Wednesday and a screening in Sebastopol next Tuesday, the 19th. So Wednesday the 13th in Berkeley and the 19th in Sebastopol. Then if you're not in one of those areas, the best thing to do is to go to keysbagsnameswords.com and there's a host a screening link and you can sign up there and we'll help you host a screening in your community. Our goal is to... get this out to as many people as possible and to sort of share the message that, you know, find ways to connect with people and that it's doable and possible. And so we'll help you. We've got it in, we're constantly adding new languages, we have subtitles or dubbing that we can put it into. We're doing everything, we're doing these community screenings a lot of times. So community centers, academic centers, places where people might gather and whatever you've got in your community, we'll help you get it there. Our goal is for it to help people, to be a resource, to help people, whether it's professionals, to help them do their work, whether it's community members to figure out, you know, how to find a local artist in their community and connect with them or their local physical therapists or things like that, like finding the tools that exist in different communities to help that community be more resilient. And if nothing else, just to start a conversation, if people are talking about aging and they're talking about brain health and they're talking about dementia. Hopefully they'll be less afraid of it and less afraid of people with it. And that will help build connections as well. So. Yeah, yeah. And so the documentary shares people who have the disease, their care partners, and some of the healthcare professionals. All of their perspectives are kind of included in the documentary. Is that right? Yes, yeah, it's a packed 85 minutes. Okay. That's exciting. I mean, and I think that disease touches on all of these players and they're all important and kind of share different perspectives about the same reality, but different perspectives. Yeah. the film is very much a global film as well. So not only is it all those people, it's all those people in all those places. So, yeah, it's exciting. So hopefully everybody will find something that resonates with them. Gotcha. So the folks who are featured in the documentary come from multiple different countries around the world as well. Particularly the fellows are all over the world, but Helen Rocheford Brennan is from Ireland. Jill Harmon and her husband Don Harmon are from California. Lingani is from Botswana. Then there's Jorge from Cuba. Then there's Lea from Brazil, who's now in California. So yeah, there's people. And then Dana is from Vermont. So yeah, there's people from all over. A lot of US and Ireland, because that's where we have a lot more connections, but there's Africa and Emmy Kyoto is from Asia and then she's done, well, she's from Japan and then she's done work in the Philippines and in Nepal. So, and then we're in Jordan. So yeah, there's a wide variety. That's very exciting. I'm always curious about like what people around the world have in common in terms of, you know, their experiences with dementia or Alzheimer's disease and other related dementias, but also kind of how different societies and different places treat this, you know, biological or medical concept differently in their own societal context. One of the things I see, and this is just my observation, is also which cultures are more intergenerational. It feels like certain cultures live more, bringing children and grandparents together, whereas it feels like in the US, we tend to segregate more and we tend to be in more age-specific environments. And I think actually that mixed intergenerationality is a wonderful thing. You've got these... you know, children with a lot of energy who need supervision. You've got elders who have a lot of love and maybe not as much energy, but the wisdom of the years. And if they can share this, the children bring the energy, the elders bring the wisdom and the experience. And to me, they have a lot to give each other. And then hopefully maybe give the middle group a little rest. That's right. Yeah. And coming from someone who grew up with, you know, my own grandparents, I certainly have benefited from the wisdom of the older generation. And it's much harder, I think, for everyone to not be together and have that sense of, you know, family through the generations. And I think different people in the family kind of just brings different things. And also, you know, back to people with the disease. because the brain is changing, I also think that there are certain behaviors and certain emotions that are common or come full circle in some ways, certainly not to infantilize anyone with dementia, but I think the underlying emotions and the need for connection and communication is the same, but just that the way of communicating is perhaps, not there either because of a child's development. or because of the brain disease, but there's a lot of things that can be the same in terms of how you approach someone, whether it's a toddler, a four-year-old, or you approach someone who has dementia. I can definitely see from an intergenerational perspective that it could really be beneficial. And I know this is not available everywhere, but in our... community here in Winston-Salem, North Carolina, our senior organization, Senior Services, is actually building an intergenerational building where children and older adults and people of all ages could come together for arts-based activities and interaction. So that building is actually going to open up later this year. I think I've seen that in the Netherlands, is I think where I've seen it so far. And it looks like it's worked out beautifully. And I'm curious to you for doing that. I think that's a wonderful thing. And I'll be very curious to see how it goes. Yeah, we're actually moving all of our memory clinics there. One, because it's just better in terms of parking, so that people don't have to get all stressed out before they come and see a memory doctor. But also because we'll be more integrated with the community and other partners in the community, other universities. You talked about physical therapy. There's going to be both. physical therapy and occupational therapy, as well as a driving simulation, because, you know, at least in our country, driving is such a big hot topic related to people's independence. But anyways, enough about me. I wanted to talk more about the movie or the documentary, actually. I wanted to just to see, you know, if there was one particular story, either from the documentary or from the oral history project that touched you, and if you can tell us a little bit about that. one particular story. I think it was funny. So each of the books has maybe 30 stories in it. So there were a lot of stories in there and some are very short and some are longer and, and also multilingual, which was wonderful. What I loved about the stories was not so much a specific story. I mean, there were, I loved it. Oh, one guy, he was just hilarious. And he had, he has a diagnosis of early Alzheimer's and despite that he has a great sense of humor and he's held onto it and he tells these hilarious stories. And he's like, you know, and. You know, we'll live until we live and then we plot. You know, funny way of speaking. But I think what I really like, I was thinking about, you know, which story stood out and it's not so much the individual stories as it is the conglomeration. All these stories together, because I think you talk to one person in one moment and you catch them when they're in a hilarious mood and you get a funny story. You catch them when they're in a sad mood and it's something profound or heartbreaking. And, you know, you catch that minute. But when you put the stories all together, and you have 30 stories, you start to understand how rich the experience of caregiving is and how encompassing it is and that it really does, it's one part of one person and they have their whole lives that existed before caregiving and will continue after caregiving. And then there's this rich time where they're all over the place. And I mean that in a good way, not in a bad way, more in the sense that you're experiencing everything and you're taking in everything. And so, as I said, like it might be frustrating and sad at one moment, but then it might be beautiful and hilarious at another moment. And yeah, I think it's that stepping back from all the stories and seeing what they all bring and the richness of the tapestry they weave, that's the part that I find so wonderful. And I kept feeling like every story we add to it adds to that richness and adds another layer and another perspective. And you look at people like, gosh, how many health care professionals would I have interviewed and talked to? It was because they took care of their grandparent and they didn't know what to do that encouraged them to go into, they wanted to get the answers and understand and help others. And that's what led them into nursing, social work, medicine. And it's neat to see that seed that got planted in one place. Or it's beautiful looking at so many times the couples or Jill Harmon, who's in our film, hearing her talk about her husband and how much she loved him. And she's, of course I'm gonna care for him. you know, for better or for worse, he's my husband. And, you know, I think some people find that very challenging and hard. And then there's someone who just wholeheartedly embraced him and the role and what she could provide and, and her sense of humor. She just laughs or everything and, and takes it as it comes. You know, if he says something absurd, she just goes with it. And Dana, the artist in our film talks about that with her mother and just, you know, if you go where she goes, it's usually okay. Every now and then it was scary or something, you know, I think she had some war memories that's every now and then cropped up. So those can be kind of scary and you'd want to talk someone down from that. But most of the time they were just funny or nice, or she would see her husband in places where he had died years before he wasn't there. But obviously that was a warm, beautiful memory she was bringing up. And why wouldn't she want to embrace that and go with that? And it brought back her father for those moments. So I just, yeah. I guess I love the stories of people who can see the positive and find the connections, but I think everybody finds them in one way or another. And having all these stories come together creates a whole that is bigger than some of the parts and gives you a sense of that fullness of the life experience. And it's not just, you know, I think in the popular culture, you see so many films that are just like, oh, dementia is terrible. It's horrible. It's overwhelming. It's burdensome. Yes, it can be that, and it can be that at moments, but I think there are these moments of grace and beauty as well, and you can hold both. Right, right. And that's the fullness of life. You know, you have all the emotions, sometimes at the same time, which makes it challenging, but you have all the emotions. And I think this, these particular diseases, because it's so relational, and you know, the family or the care partner is right there with it. I think that brings out additional aspects of that. humanity that I think we all share. And certainly I know to me, that's one of the beautiful things to, to remember and to bring out. And I'm excited to see the documentary. I signed up to be one of the screening partners. So hope to, hope to watch it soon with other local community members. And, and I'll let you know how, how it goes. Fantastic. Well, and we're happy to come out and support you in any way. So well, if it helps out a few, we could either do a Zoom panel or talk about it afterwards. We'd love to help. As I said, for us, if we can get conversation started, we think that's the most powerful thing. It's where these connections get going and understanding is built. That's great. Well, thank you so much, Caroline for joining us today. All right. Talk to you all next time. Thank you for listening to Ask Dr. Mia podcast. Please share this episode with someone you love and see you guys next time.