In her December 2017 post, “Stealing Hope,” Anne D. Basting passionately challenges the fear and stigma-inducing “tragedy narrative” that distorts how people living with dementia are seen within the broader culture.
The two of us were especially inspired by Anne’s closing words, “Family members and friends…can learn to shift toward creativity to find emotional connection, to play, to create new moments and experiences together.” They really resonated, you see, because we are two “developmentalists” who believe that play and performance are key to how human beings continue to grow and develop regardless of age, life circumstance and/or cognitive and physical ability, In fact, we are leading a workshop series, “The Joy of Dementia (You Gotta Be Kidding)” in cities across the country.
We are far from alone. Across the globe, practitioners, caregivers and patients are embracing play, performance and the arts. Many recognize the value of improvisation in supporting everyone to live with (perform) dementia in new and more joyful ways. As actor and improviser Karen Stobbe has written, “Flexibility, adaptability, courage, spontaneity, listening, generosity, acceptance…are characteristics of an excellent caregiver. They are also qualities of an excellent improvisational performer.”
Improvisation, along with other creative approaches that reawaken connection and joy, are serious challenges to the underlying concepts (individual self, identity, memory, etc.) that shape our understanding of what it means to be human. Rightly or wrongly, in Western culture, it’s primarily our cognitive functioning that is thought to make us human. And this is what people with dementia lose – our ability to think, to reason, to recognize, to remember, to know. We must ask, does our society believe that they have lost what makes them human? Sadly, this is precisely how people living with dementia are too often related to – as people no longer expected to learn and develop, adapt and connect – an expectation as devastating as the loss of memory.
But what if this belief has severely limited our capacity to appreciate the multitude of other ways (creative, physical, poetic, silly) human beings can and do connect all the time? And what if these other ways of relating enable us to deal with the dementia experience – not to mention the increasingly uncertain world in which we are living – with compassion, creativity and growth?
These are just some of the questions we have been asking over the last five years as we focus a “development lens” on dementia – a journey made more poignant when Susan’s sister was diagnosed with Alzheimer’s and Mary’s mother passed away from dementia-related complications.
As each of us slowly transformed our relationships with these dear family members, we realized we were drawing on the universal capacity to play, create and connect with those who do not have adult cognitive functioning. We mean babies! Think of how they learn to speak. They babble – they “say” “ga ga goo goo, ba de ba” and adults around them say, “I don’t like broccoli either, but it’s good for you.” Far from treating their babble as nonsense, adults naturally (it seems) take that babble and use it to play “having a conversation,” encouraging babies to play, pretend, imitate and imagine to their heart’s content.
When adults, especially those with cognitive limitations, “babble,” it can be very difficult to see or hear them as offers to create with. Mostly, their sounds get interpreted (“Mom is crying, so she must mean she is in pain”), or reacted to with anger, frustration and/or great sadness. Rarely are they the source of improvising a conversation or a scene together.
What would it mean to bring this new way of being and seeing to our relationships? To respond in a way that encourages the joy of discovery and the emergence of creativity? To embrace the risk-taking and dream-making that is possible when improvisational play is how we do everything in our lives?
We’d love to hear your responses.