We have had the honor of leading several virtual “Joy of Dementia (You Gotta Be Kidding!”) workshops during this extended moment of physical distancing. As is true in all of our workshops, participants engage in quite a bit of improvisational play. While the response is uniformly positive, there is invariably someone in every workshop who says, “This is incredible, but how can I possibly do improv with someone with Alzheimer’s?”. To which we sincerely respond, “They may be way ahead of you.”
As people living with dementia become less able to participate in the hyper-cognitive culture in which we all live, they are far less bound to the traditional rules of language and knowing than those of us who consider ourselves “cognitively adjusted.” As nurse and author Sallie Tisdale writes in “Out of Time: the un-becoming of self” (Harper’s Magazine, March 2018), “Dementia gives us an opportunity to question how time and language and perception work [and find] new ways to use words, repetition, pauses and silences, gestures and images…”
In the Joy of Dementia workshops, we create an environment in which everyone can play with how we use words, silences, gestures, and much more in order to be more giving to, and intimate with, everyone in their lives, including those living with dementia. Improvisational play emphasizes seeing, accepting, and creating with “offers,” which can include all the stuff of life, even the stuff that doesn’t “make sense” or is upsetting. It is all about working with others to create something new with what exists, including – and given the times in which we are now living, perhaps especially – the crap of our lives.
This is important because care partners and others often have trouble letting go of “how things should be” and who their loved one “used to be,” so improvisation gives us a powerful tool for moving from “How things should be” to “What can we create given what exists?” – and the most humanizing shot at relating to the strangeness, the fluidity and the uncertainty of dementia (and pandemic life) in ways that promote intimacy and growth rather than frustration and humiliation.
As developmentalists who believe that everyone can develop throughout their lives, regardless of age, life circumstance, or physical/cognitive abilities, we see our human ability to play (with improvisation as a form of play) as key to moving beyond the scripted and often narrow roles that prevent us from growing in new ways. For us, bringing different kinds of people together to play and to create something new together is the activity of development – and an antidote to cynicism and hopelessness.
Thus, we relate to everyone as members of a performance ensemble – a community of performers and conversationalists who are working together to create an environment in which everyone can honestly and openly share their fears, their joys, their conflicts, and whatever else they want to express. One of the conflicts expressed by more than a few of our participants is the fear that being improvisational with someone living with dementia is the same as “lying” to them. Understandably, this is something they find difficult to do, especially with parents.
In one of our workshops, these concerns helped open up a conversation about the limitations of looking at life through the lens of “truth” or “lying.” We led a “Yes, and” exercise (“Yes, and” – the acceptance of, and building with, offers – is at the heart of improvisation) that helped them see that other ways of responding are possible, including with curiosity. When someone living with dementia says, “My sister Louise came to visit and we had a great time,” the more negative response, “That’s not possible. Louise has been dead for ten years,” can be replaced with the more curious, “Tell me more about Louise. She sounds fun.”
We also come to this work as community organizers, culture changers and faculty members of the East Side Institute, an international think – and “do” – think tank that is at the center of an international movement of people who recognize that if we are going to create a better world, ongoing social and emotional development is necessary. We use social therapeutics, a new kind of psychology that incorporates play, performance, and practical philosophy (“the asking of big questions about little things”) to inspire human development/community development through group creativity to our work as dementia activists.
During COVID-19, we have seen this movement explode, as people across the globe are finding wonderful new ways to creatively impact on the dislocation and isolation (already familiar to those living with dementia) so many are feeling during this pandemic. One of these new leadership efforts is the Global Play Brigade, which is bringing together an international team of improvisers and therapists who are conducting play sessions involving thousands of ordinary people across the world eager to try some new performances of living.
So we invite you to join with us in using this moment to try something new, break with the same old roles and rules and do some growing together. Our families and friends, our communities, our countries and our world will be glad we did!
I find that engaging the uninhibited minds of individuals with dementia to be similar to engaging the naturally uninhibited minds of young children. For both, the spongy curiosity is as genuine as the humility that comes with listening and learning.
Hi Stuart, I love what your “completion” to the article. I think the environments we create with children – environments of play, imagination, curiosity and performance – that everyone, young and old, enthusiastically create/participant in, are how babies and young children grow. Sadly, we stop creating these playful growth environment fairly early in life, so I agree, dementia gives us an environment in which we can so thank you for your humility and compassion.