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.
Bailey says
November 27, 2018 at 4:58 pmI found this article quite interesting to read. I work in healthcare and I help people with dementia everyday. I have also witnessed a great Grandma who got dementia. It is painful to watch and I can only imagine what she went through. I’m glad that someone is working on getting rid of the stigma that these people are “broken” or “vegetables”. People who have dementia are just as fun to interact with. Great read!
Hannah says
April 20, 2018 at 10:12 pmHello! I am an Aging 320 student at the Erickson School of Aging. I really enjoyed reading your post and found it quite inspiring how you shed light on the use of improvisation with individuals with dementia. It changes the entire stigma of individuals with dementia being seen as “broken” in their inability to always communicate with people to; instead, shaping our communication patterns to best address their needs. And most importantly relying the joy of communication back to the individual, just like is seen when an adult interacts with an infant and is overjoyed in communicating with them even though they don’t necessarily “understand” each other. This is especially important in the need for engaging social support and physical contact. In my class we learned about the importance of social support in preventing social isolation, which can not only affect mental but physical well-being. The need for social support is even more crucial in people with dementia. Even if communication cannot be effectively communicated through words, the power of music and touch can go a tremendous way in providing a connection to an individual with dementia. In my class, we learned how touch can transport an individual with dementia to a distant, happy memory of them being a child. This is why I think finding new forms of communication, as you mentioned, is incredibly necessary for changing our perception of individuals with dementia.
Mary Fridley says
August 16, 2018 at 4:19 pmHi Hannah, my apologies for not responding sooner! I especially love what you say about challenging the notion that people with dementia are “broken” (rather than our limited system of communication). I agree that we need to find (create) new ways of touching (which can include but is not limited to language) each other, over and over and over again. Good luck with your studies and if you’d like to stay in touch, feel free to email me at mfridley@eastsideinstitute.org. Mary
Jim says
April 9, 2018 at 10:15 amIt’s great to read that folks are working on this. My aunt and uncle both developed dementia in their 70s and passed away due to related complications. It was difficult and the experience with each was very different. They did not remember me, and I realized how many of our conversations depended on or drew on shared history. I also realized that being improvisationally in the moment was okay. It was less okay for my Mom (their sibling) who they remembered but didn’t quite recognize, I guess they remembered the younger versions of themselves. What remains and what is lost is interesting, both aunt and uncle retained bi-lingual language skill and remained engaged with things that were going on. The stories that we tell ourselves about diseases like this don’t need to be so difficult, learning a new collective story for dementia would probably help us all.
Mary Fridley says
April 12, 2018 at 11:35 amThanks for such a thoughtful response Jim. I especially like that we are “learning a new collective story”…
June Hirsh says
April 9, 2018 at 9:17 amThirty years ago my sister, at age 55, began experiencing the beginning signs of dementia. Our family had no tools. We were pretty isolated and hopeless. I saw this disease as such a tragedy for my dear sister to suffer through. My family slowly fell into a state of mourning and denial.
Her terror was so overwhelming-I dreaded seeing her in pain, so frightened and lost. I tried the best as I could to bring her some relief by reliving happy memories with her.
The way I “understood” this disease was that I was honestly relieved for her and for myself and for my family when she finally after close to 30 years of anguish, “disappeared”.
With your work I get glimpses and glimmers of a different and humane and developmental way of “seeing and being” with dementia-wrenched away from the medical money-making model. I’m hopeful that this valuable work of yours and of others who are working on this, will/is transforming this deadly, inhuman and brutal narrative, so that caring and loving people with and without dementia can create and build and give to each other together, as we all need to, to nourish each other in our daily lives.
Thank you.
Susan Massad says
April 12, 2018 at 2:08 pmThanks June for giving your experience. There is a lot of pain involved for everyone . As Jim M says above, “we are learning a new collective story of dementia” that hopefully can make a difference.
susan
Jean Sidden says
April 8, 2018 at 11:18 amI would love to hear more about your workshops. I have a friend with Alzheimers and I will be moving to Brooklyn to help out with her care, just as a friend, not a professional. And I have a theatre background and came to my own conclusions that communication with my friend was like improv – taking my cues from her, saying ‘yes’ and responding based on what she said. And I’m familiar with Karen Stobbe’s story and website. If you have any information to share you could use my email. Or if you have a schedule for your workshops to share I’d love to get that.
Susan Macaulay says
April 6, 2018 at 2:20 pmIn answer to your three final questions, here are two examples of what it meant to me and my mom when she was living in the “end stages” of Alzheimer’s disease:
http://myalzheimersstory.com/2016/12/05/make-it-up-as-you-go-along/
http://myalzheimersstory.com/2014/03/04/alzheimers-alphabet-soup-is-a-sentence/
Here’s an example of the power of storytelling, which clearly demonstrates that Mom’s ability to understand story remained intact:
http://myalzheimersstory.com/2017/05/12/the-telling-of-pookie-a-story-of-love-magic-and-possibility/
I think my mother’s creativity and intuition increased as her Alzheimer’s disease “progressed.” I think losses in some areas are matched by gains in others, but people are so focussed on the losses that they completely miss the gains.