By Mary Fridley
Last month I had the pleasure of attending a conference hosted by the British Society of Gerontology (BSG), which invited me to present on the social therapeutic approach I’ve used in the creation of The Joy of Dementia (You Gotta Be Kidding!). Social therapeutics is a new kind of psychology developed by the East Side Institute. It incorporates the human ability to play (with improvisation as a form of play) and perform (to be who we “are” — the scripted and often narrow roles we all play — and who we are becoming — what we co-create with others) to work with everyone, regardless of their cognitive ability, to grow emotionally, socially and intellectually, across their lifetimes. We have trained thousands across the world in this “non-knowing growing,” ensemble-building approach, many through the International Class, our flagship program.
As I shared with my BSG colleagues, I am passionate about ending the “Tragedy narrative” — and that’s a very BIG T — of dementia for many reasons, including that it prevents us from accessing ordinary life experiences that could help us respond in more caring ways. For example, I’ve never understood the upset with People Living with Dementia (PLwD) repeating themselves. Yes, my mother, who died from complications of late-stage dementia, repeated herself constantly — but so do I, and so does every human being in the course of our daily interactions: “How are you? I’m fine.” “How’s work going? Same old, same old.” I offer this with no criticism — having a “script” can be helpful, especially when meeting someone new — say at a conference.
Similarly, PLwD are often characterized as “no longer recognizable,” which is also something we all experience in life. Think about parents of teenagers — and I don’t mean this at all glibly — who are in pain and shock by what happens when their once-loving child turns 13 or 14. But for the most part, they figure out ways to relate to these strange and not always likable people with whom they now live, without totally giving up on them. Does this mean all of these experiences are equivalent? Of course not. Am I making light of the emotional impact dementia has on those impacted? Not at all. Believe me, I’ve experienced every emotion possible — and I still believe a lot of what we experience does not begin at the point of diagnosis, so why not embrace what we do share?
Perhaps it is because, as one of my colleagues said, “I get what you’re saying, but we do that with teenagers because they have potential.” And she’s right. Our culture values those “with potential” and discards those viewed as having none and, as we all know, it isn’t just “old people” and people living with dementia who suffer as a result. But even this doesn’t explain why agebuzz readers and other caring people go along with this uncaring framing of humanity.
I also share these examples to highlight how much environment matters — and how much our inability or reluctance to build more caring, compassionate, and playful spaces contributes to dementia and so many other life experiences becoming Big T tragedies. I say this not in judgment but rather to point out that people and environments are inseparable regardless of whether we’re doing person-centered or relational care. We are always in environments that inform how we perform and relate to each other — think of the difference between working for a supportive rather than a toxic boss or learning from a teacher who’s interested in what you have to say instead of droning on and on.
While no PLwD are happy to be diagnosed with dementia, they are as impacted as all of us, if not more, by the environments that too often surround them. As my friend Mike Belleville has said, “I’m not ‘battling’ dementia, I’m battling the attitudes of those around me” — attitudes even the most well-meaning of us can help perpetuate. If you want to hear what this feels like to someone living with dementia, I hope you will read “How to talk to me,” a poetic and powerful piece by Maxine Linnell, a writer, poet, blogger, and former psychotherapist in the U.K. who was diagnosed with early onset dementia in 2022. In it, Maxine asks us, with words both direct and inviting, to consider how we want to be with her.
Please take a moment to read what she has to say, regardless of whether or not you are affected by dementia because her words are relevant to every aspect of our lives. One of the reasons I’m a big fan of improvisation is because it’s all about listening in the spirit of creating something new. I also happen to believe that improvisational play, with its emphasis on “Yes, And” — seeing, accepting, and creating with “offers” (including things that don’t “make sense” or that we find upsetting) also gives us the humanizing shot at relating to the uncertainty, unpredictability, and fluidity of dementia (and our world) in ways promoting intimacy, possibility, and growth.
I also think Maxine’s words resonate with the work of john powell, founder of the University of California Berkeley’s Othering and Belonging Institute, whose work I’ve come to deeply admire. john is replacing “inclusion” with “belonging,” with an understanding of belonging as “creating what it is you’re belonging to,” which I understand as the difference between playfully leading with “Yes, And” rather than the more common “Yes, But” or NO.
Why is this important? At the close of my BSG remarks, I shared a quote by renowned play advocate Brian Singer Smith, “The opposite of play is not a present reality or work. It is depression.” At a time when so many people of all ages and abilities are depressed, anxious, and fearful, we would do well to heed his words. I don’t know if we’re in a mental health crisis, but I do know that lots of people are in terrible pain and turning to terrible solutions because the old answers aren’t working. Play doesn’t merely change us; it transforms the environments in which we live and work. In this way, it is revolutionary — and perhaps it is time for a small “r” revolution.
Mary Fridley is on the faculty at the East Side Institute in NYC, co-creator and leader of The Joy of Dementia (You Gotta Be Kidding!), and coordinator of Reimagining Dementia: A Creative Coalition for Justice. An accomplished teacher and workshop leader, Mary practiced social therapy for 12 years and uses the social therapeutic approach as a teacher and workshop leader. She is the author or co-author of several articles and chapters on the Joy of Dementia, including a chapter that appears in The Applied Improvisation Mindset published in August 2021. Additionally, Mary is a guest blogger for agebuzz and a playwright and theater director. She makes her living as a non-profit fundraising consultant. She can be contacted at firstname.lastname@example.org.