What would it take to transform dementia care? While a lot of hope and money is being put into new monoclonal amyloid antibodies like lecanemab, the evidence is that while they are great in reducing amyloid in the brain for those with early Alzheimer’s disease, the effects are at best modest in slowing down the decline in cognition and function (more to be said on that in an upcoming podcast).
In order to truly transform dementia care we need to think much broader than the amyloid hypothesis. So on today’s podcast we invite four brilliant individuals to talk about their perspective on how to change how we as a society and health care system partner with individuals with dementia. These amazing guests include:
- Susan McFadden, PhD, retired professor emerita (psychology and gerontology) at the University of Wisconsin, Oshkosh, an experienced researcher and practitioner in the field of dementia, and creator of the Fox Valley Memory Project. Her most recent book is Dementia Friendly Communities: why we need them and how we can create them
- Anne Basting, PhD, a MacArthur Genius Grant awardee and professor (English/Theatre), University of Wisconsin, Milwaukee. She created TimeSlips which we talk about in our podcast. Her most recent book is Creative Care: a revolutionary approach to dementia and elder care
- Abhilash Desai, MD, geriatric psychiatrist, adjunct associate professor in the department of psychiatry at University of Washington School of Medicine, and poet! He wrote a book titled “Psychiatric consultation in long term care” that has a strengths based approach to staging dementia (how cool is that)
- Judy Long, MDiv, BCC, palliative care chaplain and educator at UCSF and caregiver. She directs UCSF MERI’s patient, family, and clinician support with classes and consultation on resiliency, well-being, and grief.
We discuss the importance of viewing individuals with dementia from a lens of resilience, the importance of creative engagement (as noted in Anne and Susan’s wonderful article on this subject), the role of collaborative care, and what we can do to improve inclusivity for individuals with dementia in our community and health care systems.
Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: And Alex, who do we have with us today?
Alex: We have a full house today. We’re delighted to welcome Judy Long, who’s a palliative care chaplain at UCSF and a caregiver. Judy, welcome to the GeriPal podcast.
Judy: Thank you. It’s great to be here.
Alex: Great. And Anne Basting is Professor of English at the University of Wisconsin Milwaukee and the founder of TimeSlips. She was a grand round speaker, saw her talk here a few months back, and a wonderful video which hopefully she can encapsulate in words today. Anne, welcome to the GeriPal podcast.
Anne: Great to be here.
Alex: And we have Ab Desai, who’s a geriatric psychiatrist in Idaho. Welcome to the GeriPal podcast, Ab.
Ab: Delighted to be here.
Alex: And we have Susan McFadden, who’s a Professor Emeritus of Psychology at the University of Wisconsin Oshkosh. Welcome to the GeriPal podcast, Susan.
Susan: Thank you.
Eric: We’re going to be talking about transforming dementia care. What does that look like? I know big news came out yesterday about lecanemab and monoclonal antibodies for dementia. This is not going to be on that topic. We will have podcasts on that topic. We’re going to be talking about things like creative engagement in individuals with dementia. But before we dive into those topics, somebody, I think, on this call, has a song request for Alex.
Susan: Yeah, that was me. I had a request for Give Me Love by George Harrison. And the reason why I chose it was because some of the lines really applied to what we’re talking about here, because he talks about give me hope, help me cope with this heavy load. It is a heavy load and yet I think all of us here think that it can be lighter when there are supportive programs and community engagements in place. So take it away.
Alex: Great, thanks. Wonderful choice. (Singing)
Susan: Thank you.
Alex: Thank you.
Anne: You’re right, that was spot on lyric wise. Spot on.
Eric: Let’s dive into this topic. We’re going to be talking about transforming dementia care, and the very first thing that I’d like to talk about is that about a decade ago, Susan and Anne wrote a really amazing article and Ab, I think you are the editor for it. It was titled, Healthy Aging Persons and Their Brains: Promoting Resilience Through Creative Engagement. When was that, 2010?
Eric: 2010. I’d love to get your thoughts on what resilience looks like for individuals with dementia as we think about transforming dementia care. You wrote about how when it comes to talking about patients with dementia, they’re rarely portrayed as resilient. Rather they’re Ill, maybe they’re aging unsuccessfully, but never really resilient. What does resilience look like for individuals with dementia?
Susan: Well, I mean, the whole idea of resilience started out in psychology with psychologists studying children who had gone through difficult times and yet seemed to be able to come out of that stronger. I think the general definition that’s given is it’s the ability to bounce back from some kind of adversity. And I think we see that all the time in folks having dementia. In fact, for some individuals the dementia is a gift, with the loss of memory for what might have upset you 20 minutes ago, and so we see people who come in and they are presented with TimeSlips’ engagement activity, or some other kind of arts activity, or a conversation with Ab, and somehow what had been distressing them has faded away. I saw this happen with my mother all the time, and it was actually a gift.
And then the idea of being able to sustain the resilience I think is important, and that is where other people come in, other people supporting the individual in their resilience. And that’s why we need this community support, I think.
Eric: It really reminds me, we just did a couple podcasts on grief and part of grief is that where there’s often a movement towards acceptance, you never go back to who you were. You’re a new you. And it’s the same thing when we think about resilience and what you wrote about is, while the traditional model is we bounce back to our past state like a rubber band, you don’t really bounce back to the old you. You’ve either learned or you’ve grown in some way to face that life circumstance and you’re never quite the same as you were before. What are your thoughts on that, Anne?
Anne: I was just–
Susan: Well, I was just going to add one more thing, that in addition to the bounce back, which you just said, and sustaining this new image, is some kind of growth. Do we ever think about older people who have some type of dementia as having a possibility for growth? And yet I think all of us have seen that. I’ll hand it over to Anne.
Anne: I think that’s one of the things. At the end of the day, people say, “What is your work about?” It’s about creating opportunities for growth all the way to the end of life, from wherever the person is for growth.
The arts are just a language that everyone has the capacity to use, and that is a language that, as other languages are challenging, putting things in chronological order can be challenging, but the arts as a emotional and symbolic language is where you can jump in and express and grow from wherever you are all the way to the end.
And to me, resilience is similar. The language of bounce back, it’s a restorative moment for you to gain energy and strength to take the next step, whatever that next step may be. I also think it’s connective in the way that Susan is describing. That it’s a connective process to yourself, to your own why. Why am I? It’s a connection to that., And then also that same connection to the people who are supporting you.
Eric: In the article, you wrote about creative engagement. I guess I never paid attention or never heard that term before. What exactly is that?
Anne: It’s a facilitation. It’s a invitation to a person to express who they are or what they’re thinking. And it’s doing that through imagination, rather than through memory. And that is the most important part for people with dementia, because expression through memory isn’t always there, and so you’re setting a person up for, “Here, express what you don’t have anymore” or “Express what is exactly the challenge for you” or “Please express yourself in failure and loss” rather than, “Here’s an invitation for you to join expression and meaning making in the moment and express yourself and join the world with me.” And that’s creative engagement. It’s an invitation to the meaning making process with whatever tools the person has the capacity for at the moment.
Judy: I would say too, it gives them back tools when so many have been stripped away and there’s so much isolation and sense of failure as a result, there are other ways that can let people in.
Susan: Right. I have a wonderful TimeSlips that Anne gave me years ago. It says, “Forget memory. Try imagination.” How wonderful.
Eric: I love that. I’d love to start talking about TimeSlips, because I was actually looking at the TimeSlips website and you have a beautiful video on that, and it particularly talked about when we try to connect with our often older patients, our impulse is to draw stuff from the past, to have them tell stories about their past, which often is really challenging for individuals with dementia and could start this behavioral process and “agitation” in folks. TimeSlips is really about in the moment, it feels like. Can you tell me a little bit more about what is TimeSlips and what’s the process that you do?
Anne: It’s really teaching that act of invitation and using imagination in that invitation. It’s a very simple little communication loop which is asking a beautiful question. A question that has no right or wrong answer, that invites the expression. Using improvisation, the yes and kind of radical affirmation process to drive the expression forward, the engagement forward. And then very simply offering proof of listening, which is a great way of saying you’re showing the person they’ve been heard. So you’re either echoing everything they’re saying, including facial expression or sound. Words are the thinnest part of our communication. It’s the thinnest thing. Or writing it down. The person sees and feels that they’ve been heard and that’s the building process of the meaning and expressive process.
That’s really the simplest version of it, and it sounds so simple, but you have to really coach people through that, because our impulse, as you said, is to walk into this moment with the person with dementia carrying 50 pound bags of memory and, “Here, here’s this one and this one. Do you remember this one and this one and this one?” And the person is like, “No, I can’t.” How else can you invite me into the moment? How else? Set down the 50 pound bags of memory and come in and invite the person into where they are and expression from where they are.
Alex: One of the things that I loved about your grand rounds was that in addition to describing the TimeSlips as you just have, you also had a video, which really made it concrete to people. This is what those words mean in action. And we are a podcast, so we can’t show the video, but is there any way you could verbally describe a process for a particular person with dementia or a group of people?
Eric: How about Alex be the person. [laughter]
Anne: Well, I would simply say… To start, I would say, Alex, turn around and look at that wall behind you of all the pictures and just what are the first three words that come to your mind?
Alex: First three words would be, family and history and diversity.
Anne: Is there a movement? This’ll be hard to describe on the podcast too, but can you outline the shape of one of those frames with your finger? And then do it with your whole arm. And then maybe play music and do that and say those three words together. We just made a movement soundscape.
Your whole arm. And then we can speed it up or slow it down with the music and say the words about those images behind you. It’s inviting response to whatever is around the person in the moment. Anything can be a prompt. We often use images, but looking out the window can be a prompt. Again, it’s that opening, beautiful, question, affirming it with yes and, and offering proof of listening, and then weaving that into something that comes out that is valued that you can share with other people.
Because I also really believe that the creative process is one that is generating value. And for people with dementia and their caregivers, who both feel very devalued in the social system, support systems, their communities, the medical system. They get very little build up, they’re depleted. The creative process and creative engagement yields things that give them the value and power in their own lives.
Eric: And I love that. I mean, Judy was talking about how much resilience is about growth too. And when I think about everything that I read about dementia, it’s often about pathologizing. You have this brain disease, it will get worse. It is progressive. There is no cure. How do you prevent it? How do you maintain successful aging, which is often free of disease or illness or disability?
When we think about transforming dementia care, it’s really not just what can we do as far as new medications, it’s how do we completely think differently about delivering care for individuals with dementia. That’s why I really love this program.
Anne: I’m going to go right to Ab on this, because one of the first times that Ab and Susan and I were all in the same room, was when Ab was offering a conference in Appleton at the hospital, supported by the hospital system he was working at there, and it was all about these restorative capacities for people with dementia and their caregivers, and not just identifying the losses, which is what so many of the tests are about. Those cognitive batteries of tests are about identifying what’s lost. This whole conference that Ab puts on, and all of the tools and resources that he provides people and families with dementia are about, how do you build on the remaining strengths? How do you exercise your strengths to help really do self care and then turn it outward and be altruistic and be generous and connect to other people.
I think … There’s so few, seriously, from the hospital system and the pathologizing systems to the more social care intervention work that Susan and I really do.
Eric: Ab, why did you start getting interested in thinking differently about how we approach dementia?
Ab: Love. I love them.
Eric: That’s a good response.
Ab: I learn from them, and I tell sometimes the family members that the person with dementia, your loved one, is fine and you are replaying the event that happened a week ago and you’ve replayed that event 100 times and that’s causing a distress. I understand that time this person with dementia got angry, but you’re replaying. We need to learn from them that they have moved on, so how do we not dwell in the past negative events? How do we move on?
Sometimes actually memory causing more harm than good. There is a saying that to be happy you need good health and no memory. And I learn from them. They have dementia, if you see their health list, all problems, and they smile. They’ve never met me and they say, “I love you.” I’ve received that statement and hugs that it has stopped me in my tracks.
Sometimes when I see them, I don’t know what the language skills are, so sometimes, and I believe in touch, obviously respectfully, but sometimes I move my hand closer just to see how they respond and if they’re okay, gently touch them. And I’ve seen so many times that they will actually take their hand and move it around my waist and give me a nice strong side hug. So now that I had this improv training, I realized that what I was doing was an offer. I want to hug you. And the person with dementia, the patient, said yes. And to me that was just incredible. Anyway, I’ll stop there.
Susan: I’ll give you an example from one of these programs that Ab led years ago. At the end of the program, he was walking down the hall, you probably don’t remember this, but a woman I know who you had diagnosed with some type of Alzheimer’s went running after him down the hall. I mean, really moving pretty quickly for a woman in her mid eighties, and she says, “You have given my life back to me.” And she was saying that because of the message that had come through in this public event, where she, as a person with a diagnosis of dementia, had been invited on an equal basis with everybody else. She had been included. And that was a transformative experience for her. It supported her resilience.
Judy: I wonder if this would be a good time to ask you a question, Susan, if I may, about the power of transforming communities to make them dementia friendly. Is that something you might share a little bit with us about?
Susan: Yeah. There’s a lot of different ways to go about this, and I’m connected, as Anne and Ab are, with people all over the world, actually, and in the United States, who are really doing very creative work in making their communities more inclusive of people living with dementia. All types of dementia.
I get so annoyed when people talk about Alzheimer’s and dementia like there’s a difference. And then the people with the other kinds of diagnoses feel left out because we talk about Alzheimer’s all the time. I think Ab sees that a lot. But when we educate our communities, when we help people not to be so afraid, when we help people to let go of that tragedy narrative that everything is dark and terrible and frightening … Well, we need to acknowledge that yes, there’s darkness and terror and fright in this, of course, but we also can lift up images of hope and meaning.
Anne’s doing this all the time with her arts work and Ab is doing it in his practice with his patients. We can create various programs. There are memory cafes that are popping up around the country where people get together for an hour and a half, two hours, there’s some kind of engaging program, but there’s chatter and drinking coffee and eating treats and normalizing that hour and a half for people who often get labeled as being so disabled they can’t be included in their communities.
Just yesterday I had this experience. We have a chorus here of people living with dementia and their care partners, and we performed at a memory care community where one of our members lives. This just doesn’t usually happen, but here’s this chorus of people living with dementia and their care partners who have come to a memory care community to bring a lot of joy. And believe me, that room was just bubbling with joy, and it wasn’t because we sing so well.
Eric: We’ve talked about TimeSlips, we’ve talked about memory cafes, love to go back to the creative engagement. Are there any other examples that come to mind when you think of interesting programs that bring in creativity, focus on individual strengths for individuals with dementia and their caregivers?
Anne: Honestly, I feel it’s incredible now, some 20 years later after I first started doing this work, and Susan was in on the ground floor of my work in this field, and to look at the proliferation of the programs out there now. There’s still a really long way to go, because just the biomedical work still has a long way to go, really a long way to go. We haven’t gotten the myth of the magic bullet of having this stuff disappear for a world somehow without Alzheimer’s. But also the language, the social structures, the framing of building on people’s capacity and strengths, all of this stuff just has a long way to go.
But there’s programs in, say, museum programs, that are for families with dementia, where they’re really doing both arts projects and responding to the art in the museum for family caregivers and people with dementia. There’s a lot happening in music. Music probably has the most research wrapped around it as far as its impact, so it tends to soar ahead of the other fields. But really it’s very similar, I think, in the mechanisms of why and how it works.
Kairos Alive does the dance work. There’s several different dance groups out there that are setting models for how to do dance. I think to me, where I find still the future of the transformative potential is getting the systems that are already built for arts engagement in our communities at large to all be accessible and to be open and to understand and train their staff that the programs they’re already doing are not that far away from programs that could be accessible. They just aren’t. And it would make a world of difference if libraries all had memory cafes and art museums all had programs, or community art centers all had programs where people and families, caregivers for people with dementia who are trying to make it at home, which is an increasing number, especially as people frankly get kicked out of memory centers because they won’t take Medicaid. They find themselves homeless,
They need this social support structure and the arts community can do it. The arts and culture sector can really do it. So it’s about, to me, bringing that sector … Opening it up into a support system and bringing it into collaboration with the medical structures as well.
Eric: This is wonderful.
Susan: I was just thinking about that. Anne, you’ve been going to a lot of conferences on arts and healthcare, and I was thinking back to Ab years ago. Somehow or other he talked this medical system into allowing him to develop the Alzheimer’s Center of Excellence. I don’t know how you did this, but I will never forget that. This is back in the early 200s. I don’t know how you did this, but you somehow got a grant to hire a music therapist, and the music therapist was in a conference room in his office area, and I wanted to come and see what this was all about. And I saw his patients practically skipping into a doctor’s office. You just don’t see this. And they were coming because they were his patients, but they were going to have this hour with this music therapist who had a little keyboard and we did music things and meditation exercises, and that was transformative.
We talk about arts in healthcare and people talk about hanging better paintings on the wall, but there’s a lot more that we could do.
Ab: I would also invite family members … I’ve just started, this is new, where I ask them to write something, even a poem, if they’re comfortable, and then obviously how the negative cognitive things will be the barriers. “I won’t write a good poem,” this, that. And then obviously I tell them, “This is not an option, just for you to know. I’m going to charge you double if you don’t write it.” But I think we need to involve them somehow in this creative engagement.
Alex: The caregivers are such a critical piece of the story. Judy, you mentioned that you’re a caregiver. Any reflections from you on the caregiving aspect here?
Judy: How much time you have? I would say I am so incredibly grateful for this work that all three of you are doing. I see the need professionally and I see it personally certainly. I started out working on a grant in a NeuroPAL clinic with people that had advanced Parkinson’s and related disorders and Alzheimer’s. So these were the people I worked with, and I created a very simple little course that I still teach for people with neurologic illness, and separately for people who are caregivers of people with neurologic illness, and they really don’t have anything to do with the illness, they have to do with, how can I find some way to just be balanced in the middle of living with this when I don’t know how? How can I get through this in a way that I still feel whole?
I’m only saying that much to say that because of that I’m so aware of the need for things that will restore wholeness to people in this community who would so benefit from it, so need it. And so deserve it. And now that I’m also a caregiver, my beloved husband has Alzheimer’s, early stage moving into moderate, so I’m learning these changes as they go forward. And I think, can I find a way to put him right in the middle of Susan’s programs and Anne’s programs and Ab’s? He would love this. He would completely love this.
What happens now? I’m trying to figure out, well, I need to work this much and do I have some free time when I can take him somewhere and somewhere that I take him will… I could take him to a health center. He’d love that. Fitness, workout, except he can’t use the card to open the locker and I’m not allowed to go in there with him. I’m going, well, is there any way to start educating people how to make these things more inclusive? I think the inclusivity matters.
He doesn’t like feeling like he doesn’t have it all together. He’s very social, that’s his baseline, and he wants to be with people, even if he can’t. It can be over the top. Anyone with neurologic illnesses, I think all of you know, too much socialization is like, stop. He’ll just very quietly put his hand on my shoulder and say, “I’m done.” That means, get me out of here. It’s too much for me. But not having any is not okay.
And he, like many, will begin, really, even him, even my husband, Tom, who’s so socially engaged, will start to get quieter and quieter and stay home more and more. And I know it’s harming him. I know it is. I think I’ve said enough, but I will say that I’m really excited about these programs and I’m just looking at how I can get more of them for Tom. That’s what I want.
Susan: I’ll tell you about how I met Judy. I met Judy at Memory Camp. Memory Camp is a opportunity for families with a person living with dementia to come to a residential camp for three nights in the north woods of Wisconsin, and to, as we like to say, leave your diagnosis at the top of the hill, come down the hill to the lake, and we are campers together.
Judy and I talked in a beautiful wooded setting, and we took walks with Tom, and Tom sat and looked at the lake with other people, and we roasted marshmallows. I mean, it was normalizing this experience. We didn’t care who had dementia and who didn’t, and yet we were very careful and certainly watching out to make sure everything was safe and giving the care partners, like Judy, an opportunity to pull away and talk with other care partners while their loved ones were having a wonderful time making poetry and singing.
I mean, this is the kind of thing that is possible and it is a way of telling a new story about what’s possible. We can do this.
Judy: I’ll share too that I tried to tell why I liked it so much to some other caregiver friends, and they said, “Yeah, but Judy, you didn’t get to go away. You didn’t get to go to a retreat or a health spa somewhere while Tom was there. Why’d you like it?” And I said, “Well…” I use this word a lot, but I don’t think I ever realized it until I got to the Memory Camp, Susan, where it was the hypervigilance that I live with, it’s not something I think about. I live with it. It’s just part of who I am. It has to be. But it just dropped away while I was there. So from my perspective, I was so happy there.
And there’s another word I use a lot, but this is the only time it really meant something to me. I thought, Tom’s thriving here. He’s absolutely thriving. He loves it. He gets out in the canoe and he paddles. I mean, he’s happy. It was really lovely.
Anne: Part of, I think, the transformative, what we’re talking about, is also this reframing of, I’m going to do an intervention on that person with dementia, and then whatever that is, it’s for them, and then this person, the caregiver, is over here. It’s about designing environments and programs that are around the relationship and that foster the flourishing of the individuals inside the relationship.
The example I give is, if you’ve ever walked into a nursing home, or where there’s an activity happening for a group of people with dementia, that is a little depressing to me. I get triggered by balloon reflex, balloon tapping. And, I mean, people laugh and they enjoy it, but then it’s not a growth opportunity. It’s not something that is for the caregiver as well.
Or you’ve seen activities like that, that are not something that’s meaningful for the relationship and setting things up where people can make meaning together or have meaning thrive together, which is what I hear you describing, Judy, at Memory Camp. That, to me, is the game changer.
Sometimes I say, what if programming was so interesting that people without dementia wanted to participate in it alongside the people with dementia? And it’s accessible to both and meaningful to both and it’s just interesting and beautiful. We’re making something beautiful. And that, to me, is Memory Camp. It’s the programming that Ab and Susan are doing as well.
Ab: But Anne, there’s one more benefit I’m not sure whether you’re aware. A lot of times family members or staff in nursing homes say that, “I’m burnt out, so I don’t have the energy.” And I tell them it’s the opposite. “You do this, you will have less burnout. You will actually have more energy.” It’s paradoxical.
Anne: Yeah, it’s reciprocative.
Eric: We’ve talked about transforming care in the community. How about transforming care in healthcare institutions?
Ab: As Judy said, how much time do you have? But we have to. We have to. We have to. There’s a whole age-friendly hospital systems that we are supposed to start our journey and keep going. And then within that we have to do dementia-friendly hospital systems, and then obviously spread. So this would be balancing dementia-friendly communities. All this goes hand in hand.
One of the things I want to share is the work I do with my team in Idaho, collaborative psychiatric care via telemedicine across all areas of clinical care, so in the emergency department, in the hospital, in the outpatient setting, nursing homes, homes. I’m at home, but I’m doing joint assessment with even a geriatrician in complex cases and providing guidance.
If they forget, then I try to remind them about the four Ms in age-friendly hospital systems, what matters, medications, mediation, movement. And then again, I tell them about this improv. Each time a patient comes, you see that they’re offering you to help them. So when you say yes, you’re saying yes, I accept that offer and I also want to help your family members. Something like that. You can make it up. But there have it. And I get paid for it, which is good.
Alex: Could we touch on nursing homes too? I’ve worked with Teresa Allison, who’s taught me quite a bit about nursing home. She’s a geriatrician and ethnomusicologist at UCSF, and she wrote a paper a few years back, it’s called, Now I Write Songs: Growth and Reciprocity after Longterm Nursing Home Placement. This idea that we’ve talked about here about the possibility of growth within a nursing home.
Nursing homes underwent a mandated culture change movement in the 80s, with greater emphasis on personhood and requirements to have daily activities. I wonder what your assessment is of dementia care within nursing homes, where it’s at, and what the possibilities and potential are. I don’t know who to go to on this.
Ab: I can say that I’ve been here for nine years and I’ve seen so many people, staff, who are phenomenal and they have been there for 30 plus years, and they’re loving. I’ve met so many of them, and obviously they need all this conversation we are having to go to the next level from their natural 1.0 to 2.0 version of their caregiving or care partnering. Susan and Anne have told me it’s care partnering, don’t focus on this one aspect. Anyway, I’ve seen a lot of progress, at least in my area.
Judy: I wonder if I could ask Anne to say a few words about that, because I know when I read your book, I was so excited to see that title of someone that was the Director of Culture Transformation in a bunch of nursing homes. I thought that was so amazing. But I didn’t know if there’s anything you might expand on that with.
Anne: Well, there’s a chapter in creative care about the project that we did in Kentucky, which was essentially trying to transform 12 rural nursing homes, pretty solidly Medicaid, into cultural centers, which we’re doing what I’m talking about. The programming in nursing homes, one of the things that has to change is that it has to be integrated into the clinical, it can’t be separate. It has to be seen as valued to clinical outcomes. And it has to be reimbursable. If it’s not reimbursable, it will always be just this little, frankly, pimple on the side of the valuable, important, reimbursable clinical care, and it won’t be taken seriously and it’ll be crafty. Not that crafts are bad, but it is half of 1% of what its potential is.
We tried to do that in Kentucky. We for a year did creative workshops, taking apart the story of Peter Pan, working with Angie McAllister, who was the Director of Cultural Transformation for Signature Healthcare at the time for all those nursing homes. And it was totally transformative.
One of the things I’ve been dealing with post pandemic, which is, poor me, but my grief is really that all of the advances I think that we made at least, and that a lot of other people made, have gone backwards after the pandemic. It’s just the pandemic rifled through that system, and we’re just in a moment of rebuilding and reimagining again, I think. And a lot of hope, I think, from Ab, what you’re describing through collaborative telemedicine and things like that.
In some ways, resetting the ground helps us reimagine. I just saw Live Oak Project just came out again with reimagining. This whole thing we saw in the pandemic, it’s all broken, we have to redo it. I think it’s possible to get there again, because we did it once and we can really do it again. I’m a believer that there’s a lot of big problems, staffing levels and payment and reimbursement levels and things like that, but one of the big problems is that … The image I use is the glass dome of the terrarium. It’s set over the nursing home as though it’s a completely separate entity from its communities. The glass dome has to come off and it just needs to be collaborative. It needs to be part of it’s community public health plans. It needs to be integrated fully into the community, because bad care comes with isolation.
Eric: I think the challenge, especially with COVID, is it’s no longer a glass dome, it’s like an iron dome that has been placed over the nursing homes.
Anne: An iron dome.
Eric: The nursing home that I work in is finally doing outings for residents now, three years into this pandemic. I can only imagine what in the nursing homes, but also in the community, for communities around these programs, libraries were closed, all these places were shut down for a while, and I’m guessing it’s taking a while for many of these things to restart. Is that right?
Susan: I think so. That metaphor, Anne, that you used of the dome, whether it’s glass or iron, I often will show a slide of a 14th Century castle in England surrounded by a moat, and I say, “These nursing homes are like they are surrounded by moats, and the only people that cross over are the people who work there and some family members and a few friends.” Not very many friends, unfortunately. And if we are going to be a dementia-friendly community, which is a phrase that’s rolling off a lot of people’s tongues now, we have got to care about these places. We have got to break down these barriers and educate people about what’s going on there and bring them in and show them that joy and meaning are possible in there.
Like yesterday, taking a group of people with dementia and their care partners into a memory care community. It was great, but that’s not happening very much. And the glass, or iron, dome is really strong and the moat is there.
Anne: It’s psychological and physical, and there’s a lot of work to take that apart.
Eric: I also like, Anne, you were talking about, we know what’s valued in our healthcare system based on what they actually pay for. This is not something that is valued by our healthcare system or society at large.
I wonder, hypothetically, so aducanumab was going to cost $50 billion a year, and barely, well, I would say it didn’t work, some would say it barely works. Imagine, my last question to each of you, you got to magic wand. Now you can use that $50 billion for anything you want around transforming dementia care. You can use it to buy aducanumab if you’d like [laughter]. Ab’s going to do that.
But you can also use it on something else. What would you use that $50 billion for in transforming dementia care? You can only use it on one thing, by the way.
Ab: I have to go first. Collaborative care where geriatricians are paid just to help anybody who calls them via comanagement, and there is no need for geriatricians to write anything. They just tell people what to do and then move on.
Eric: Don’t even have to document. They could just –
Ab: No, no, the other person will document. You have to just maybe a test just for sake of it. There you go.
Eric: Lovely. Anne?
Anne: I would put an artist in residence in every nursing home, who is paid half their time in the nursing home and half their time at the arts and cultural center in town and is the liaison between the two.
Eric: I love that.
Susan: I would hire chaplains, I’m nodding to Judy, and people who… This is a phrase that I heard from one of your podcasts on palliative care, I don’t know, months ago, people who would sit with sorrow, who would have the time to do that with people in longterm care and also out in the community. I mean, I just think that we’re talking here about a lot of really profound existential issues and we need many voices to be having this conversation.
Ab: I’ve been fortunate to work with a fantastic chaplain, John McFadden. I don’t know if Susan … [laughter]
Judy: I guess I would add all the things that all of you are saying. I would love to see some way, and you probably meant this when you said it, to have these just scattered through all the communities that all of us live in. That’s what I would love.
Eric: I love, Anne mentioned this earlier, you don’t have to build whole new systems, we have structures that can do this stuff, from libraries, community centers. So it doesn’t have to be a complete transformation, it’s about bringing in some of that expertise.
Well, I just want to say really thank you for joining us today. Anne, we heard about this book. Real quickly, tell me about the book.
Anne: Creative Care: A Revolutionary Approach to Dementia and Elder Care. It has an imagination kit as well. We designed it for exactly that purpose, so that people could just take the kit home and use it or have it. Check it out from the reception desk when you walk into the nursing home or memory care unit or whatever. It’s the Creative Care Imagination kit.
Eric: Great. And we’ll have a link to that book on our show notes on the GeriPal website. But before we end this, Alex, do you want to give us a little bit more of that song?
Eric: Beautiful. Anne, Judy, Susan, Ab, thanks for giving GeriPal a little love today.
Judy: Thank you.
Anne: Thank you.
Susan: Thanks everybody.
Anne: Great to be in conversation.
Eric: And to all of our listeners, thanks for giving GeriPal love and spreading it on your favorite Facebook, Twitter, social networking site.
Alex: … Mastodon.