Creative Care: The Power of Imagination in Dementia Caregiving

Subscribe to this podcast through Apple Podcasts, Spotify, Podbean, or Stitcher, or wherever you get your podcasts.

Transcript

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: My guest today is scholar, artist, educator, and author Dr. Anne Basting. Dr. Basting holds a PhD in theater arts and is a professor of English at the University Of Wisconsin Milwaukee. Dr. Basting's work focuses on the potential for the arts and humanities to transform our lives as individuals and communities. For more than twenty years, she has researched ways to infuse the arts into care settings especially for people with cognitive disabilities like dementia. Her book, Creative Care: A Revolutionary Approach to Dementia and Elder Care was released in 2020. It is full of stories and ideas to help caregivers communicate and connect with people with dementia. And recently Dr Basting published The Creative Care Imagination Kit, a collection of story cards and question prompts that encourage people to communicate using imagination rather than memory. Dr. Basting, thank you for joining me for an episode of Dementia Matters. 

Dr. Anne Basting: It's my pleasure. Happy to be here.

Chin: Your academic background is in English and theater. What inspired you to bring the arts and humanities to dementia care?

Basting: You know I - early on the arts were very helpful to me as a form of expression. And really for kind of those middle school years as a lonely kid, they give you a world, right? And they give you a way for self-expression and for agency and connecting you with other people. And then as I had my own relationships with my grandmother who had had a stroke - she had been a powerful storyteller and then the stroke took away her ability to to speak and to read. I really found that through creativity and imagination together, we could still tell stories. You know, she just had sounds to guide me and kind of pointing her finger out the window, but we together were really able to continue storytelling together and I think both of those things made me really see that people have stories inside of them and that the real trick is to figure out how to facilitate them and invite them into being. And that just kind of set me on the path toward realizing the power of performance and playing roles, and what roles we're able to play in our lives and when, in later life, we really are taken off the stage of life. What would happen if we supplied meaningful roles for people with dementia so that they understood what was being asked of them in a way that they were given the keys to creativity and expression and that was the role of storyteller. So very early on in my academic career, I volunteered in a locked unit of an Alzheimer's ward of a nursing home and stumbled upon the power of improvisation as a way to really create the role of storyteller and invite people into expression and play and joy and it was transformative. Truly from that moment on that has been what I've been trying to recreate and let people know that they have at their own fingertips to be able to use.

Chin: Well thank you for sharing that story and that - I mean that's incredible. And a really needed perspective on a condition that so many speak so negatively about through, you know, through their experience. and we're here to talk about Alzheimer's disease and what we can do, and so an Alzheimer's disease diagnosis can often lead to this loneliness and isolation. Friends and families feel like they don't know how to interact with someone with dementia. Our society is not designed or educated to embrace people with dementia. But your work is focused on overcoming this and helping people with dementia experience meaning and joy throughout the disease process and at the end of life. This is essentially the heart of your book, Creative Care. Why did you write this book, and what do you want readers to leave with?

Basting: Oh goodness. Oh, well I wanted a way to contain about 25 years of stories I have from doing this. And I think, exactly as you say, that the predominant feeling or view of dementia is, you get a diagnosis and you walk off a cliff essentially. Your family and friends don't know how to be in company with you. The culture doesn't know what to make of you and it's a profound experience of isolation. But here, over 25 years, I had all of these tools and all of these stories of using imagination as the place where people could meet and connect in a really positive way that reoriented care from just filling in the gaps of loss toward mutual growth and joy. I mean it was - the puzzle is you have to word it in a way and tell stories in a way that people take it in because sometimes people just can't believe it's possible that there can be joy. Or they feel guilty feeling joy and laughter in a moment that feels so - that they believe is so completely overwritten with despair and it's not an easy experience. I mean we're dealing with it in my own family and I've witnessed it for, like I said, 25 years, but it is more than despair and tragedy. It is more than that. And unless we get serious about breaking through that, we'll never get through the stigma, the isolation, those conditions that we have control over changing. You know, the biomedical stuff is where we're really struggling for treatments but the other conditions - the lived conditions - we have control over.

Chin: I'm glad you used the word stigma too, because what you're speaking to is exactly addressing that and providing, not only saying “Well we need to address stigma,” but here is a technique. Here is a way of viewing life with dementia, caring for someone with dementia, that is both meaningful and enjoyable. I really appreciate that and frankly it is a conversation that absolutely has to happen alongside what you just described, this idea of coming up with medical therapies and such. And you said it earlier, and you've said it in your book, that you believe everyone has a story inside them and you want to bring those stories out. One approach you encourage caregivers to use to connect with people living with dementia is asking what you call beautiful questions. So for our audience, what are beautiful questions and can you offer a few examples for us?

Basting: Sure. I used to call them just open-ended questions. Questions that don't have a right or a wrong answer that really invite the person to say whatever - whatever they want in that moment and that's really empowering for someone with dementia, who's been kind of conditioned to think that they're going to say the wrong thing and so they might just watch. They might not say anything. But instead if you invite the person into expression from whatever they have whatever strengths they have - so it might be a sound, it might be a gesture or a word or a phrase - that to me is a beautiful question. And it's beautiful in that it's bringing the core of the person out. It's inviting that light and that spark of that person out into a sense of shared wonder. So the communication cycle that creative care really teaches starts with improv and the core root of improv is, “Yes, and”, so you accept what's being given to you. So in that way, you're accepting where the person is with dementia that you're with that day. And then you ask a beautiful question to kind of compel it forward and then you offer what I call proof of listening which is making sure the person knows they've been heard, so you write it down or you echo it and you're echoing the whole communication. You know, the facial expression, everything. I think people stop with words because we assume that's communication but words are only 7%, I think 93% of communication is nonverbal, so that is that little cycle of communication that really draws the person out, accepts who they are, values where they are, and makes sure that person has been heard. And an example, a beautiful question can be one that is a prompt for this cycle in and of itself or fits into another prompt. And what I mean by that is a beautiful question just as a prompt would be - one of my favorites is, if you could lift up right now and fly anywhere you wanted, where would you go? Just right now. And that question was very popular during the pandemic. I'll say that. And what do you treasure in your home and why? Those kinds of questions have no right or wrong and they invite expression from both sides - from the facilitator and the person that they're asking the question of. An example of a beautiful question that's used with another prompt would be, say you're walking with a person with dementia right by a window and you invite the person to look out the window and say, “What sounds do you imagine outside? What smells? You know, can we trace that tree with our hands? What would that be like?” You know, things like that just to open up a moment to wonder.

Chin: You know as someone who has done improv classes with his friends, initially I was nervous about what you were going to say because that was a very scary experience, but as you describe it, it does really seem quite enjoyable and fun and not as stressful as it was for me when I did improv. But it makes so much sense because you don't need to have short-term memory recall in order to have that meaningful conversation and experience if it is a beautiful question and discussion. It reminds me of, in clinic, I will say to people, “Try to live in your loved ones world because that's where we're with that conversation can happen. That's where the enjoyment-” (child cries in background) You can hear my son in the background. 

Basting: Yeah, yeah.

Chin: Okay, and so when I say to patients, you know, try to live in their world, it's because that's where that meaningful conversation and discussion can happen. And it seems to me that having beautiful questions really allows for people who might be nervous about that or not sure how to do that be able to do it.

Basting: Well, I think when you ask me what do I hope for from the book, is I know people have fears about, I'm not creative, or, oh God help me I can't do improv. Like you know there's just all kinds of fears about the arts and who can do them and who has the capacity for them. And I think also a hope with the book is for people to realize that creativity is an innate capacity and that we've kind of had it drummed into us that the arts have been professionalized, but we all have the ability to do these simple techniques. So I was trying to really lay them out very clearly, very welcoming, so that people could use them. You know, we train and collaborate with artists all the time because they're just really good at it but everybody can do it and if you allow yourself this shift from focusing so heavily on memory where as you know if you ask somebody a question based on memory, there's a really good chance that that one answer - because it's a it's a fact, it's an answer in fact and memory - that that one answer, that pathway in the brain is most likely broken. But if you just shift and open it up and ask a beautiful question, there's a thousand possible pathways and answers and just much more of an opportunity for that person to express themselves positively based on a strength rather than feeling ashamed at not being able to get that one answer. So it's really a confidence building and inviting the person to express themselves out of strength rather than loss.

Chin: And if you don't mind I'd like to talk a little bit about your Creative Care Imagination Kit, because when I look at your website - which is really helpful in explaining this - it says that it helps facilitate meaningful connections with others but also the imagination as you were just describing since it's not relying on rote memory. So what's in the kit exactly and why is each of those components important to the whole process?

Basting: You know it's so funny because for years I've been carefully trying to outline the ideas behind Creative Care and I think that the book itself really outlines it very well, but still people are like, “Will you just put these things in a box for me because I just can't - I don't have time to get prompts. And I just - I want it in a package so I can take it with me on a visit,” or something like that. So that's essentially what we did. We put 15 beautiful questions into a beautifully designed box, 15 image prompts for improvisational stories, and then a journal that has some instructions - very, very simple instructions and then blank pages and lined pages for you to write down what comes out of your conversations and your stories.

Chin: You've also written, though, about theater and acting as a transformative experience for people with cognitive and physical disabilities. And in fact, you've staged multiple theater productions in care facilities across the country. This is an addition to the Imagination Kit. So how do performers in these plays respond to being a part of theater and how does the audience respond to the performances?

Basting: Well, the technique that we offer through the nonprofit that I work with, Time Slips, is an organizational training called creative communities of care, how to make a creative community of care. And part of that is learning this core technique as a communication tool and then part of it is making your programming - like infusing this approach into your programming so that programming is just really interesting. It kind of ups it a notch and it invites people into an experience of wonder and co-creation. It accumulates creative sessions over time into some event that the whole community can share in – family members, volunteers, even artists that live in your area, neighbors, things like that. It just sort of reorients it into meaning making rather than distracting activities or one-off activities, really making a health center into a cultural center. That's really the root of the arts projects that I've done whether it's an exhibit or a theater production. One of the projects that I write about in the book was a recent collaboration with 12 rural nursing homes in Kentucky. And all together, over the course of two years, we reimagined the story of Peter Pan together and then staged an original play that anybody who wanted to be in could be in, so staff and residents and volunteers from the community. It was totally delightful and completely changed the way people perceived that place, reduced stigma, encouraged expression. It just became a celebration of this nursing home could become a cultural center and beauty and meaning could truly be made there.

Chin: I'm really glad you brought up Time Slips because I think it's important for our audience to know what it is and that it's available for them to see. So to begin with though, you've extensively researched the care methods you prescribe, and that's written in your books and your articles and in fact you describe them in your TED talks. But this nonprofit really takes it a step further and it trains caregivers. It trains care institutions so that they can implement this very creative approach to meaning in these interactions. How can people get involved in this organization or what do you recommend for people who want something like this for a care facility that their loved one is in?

Basting: Just send them to TimeSlips.org. We really have - we have training for pretty much any organization that serves older adults. Because we're using the imagination and creativity to foster relationships, we don't like it to be assumed that we're only for people with dementia because I think, when you create a program only for people with dementia, that you're further isolating and stigmatizing them. So we say all of our work is accessible to people with dementia and we use it to build community and connection outward from there. It's really for anyone who feels as though they need more connection and can use the creativity in a joyful, connective way.

Chin: To end our interview today I wanted to ask you, what would you say to an individual about to embark on the caregiving journey with someone living with dementia that they may not have the skills or the confidence yet in having some sort of creative engagement. What would you want them to know?

Basting: I would, I guess, let them know that you're not - some people can feel like they're giving up on memory if they shift to imagination and they don't want to do that. And I just let people know that you're not giving up on it by shifting to imagination, you're creating a new way for memory to come out. You're creating new pathways to connect and that there are so - there's an incredibly rich, diverse, international community now - Time Slips has almost a thousand certified facilitators now in over 20 countries and every state in the nation. And every month we do a family and friend webinar. There's a whole community of people out there that are using this as a tool for meaningful connection. And having meaning in your connections, in your relationship, in your caregiving enables you to feel better doing it as well. So it helps your spirits too. So you can do it, there's a rich community, and there is support for you all the way along.

Chin: Well with that thank you, Dr. Basting, for coming on Dementia Matters today and sharing this so important perspective on caregiving and really just experiencing life with a person living with cognitive change.

Basting: Thank you. It's important work and I'm really happy that I can be part of it.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. 

Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers.

This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions.

To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.