What is Dementia Man, An Existential Journey all about?
Dementia Man, from The Actual Dance, LLC, is my one-person theatrical presentation. It is a statement on coming to terms with a diagnosis of early stage Alzheimer’s and the emotional and practical struggle surrounding questions like “What are my choices?” and “What should I do?” It is, I think, what everyone facing an existential crisis does, especially a diagnosis of a non-curable disease.
This play offers a vision of a meaningful life as a deeply forgetful person, and it argues for a new form of public accessibility.Samuel Simon
This play offers a vision of a meaningful life as a deeply forgetful person, and it argues for a new form of public accessibility. It rejects the tragedy narrative and welcomes the help of everyone, including the audience, to be part of making our (every person with a cognitive disability) lives “worth living.” I rail, too, against the word “dementia.”
The play will premiere in the Washington, DC, Capital Fringe in July . Excerpts have been featured in Grand Rounds, at the Center for Medical Ethic and Humanity at the Stony Brook Medical Center.
What initially inspired you to grapple with dementia?
I was diagnosed in 2018 with mild cognitive impairment and in 2021 with early stage Alzheimer’s. I was encouraged to create the play by colleagues in the Art world who know my earlier work, a play (The Actual Dance) about my role as love partner to my wife as she navigated what was thought to be a losing battle with breast cancer. She survived.
My history is also one of “troublemaker.” My career has included working for Ralph Nader and being a guest on TV shows, including Oprah Winfrey, Face the Nation, and others. My own journey and my own essential being won’t let me be silent in the face of challenges and, in my view, a broken system around dementia (neurocognitive disorders). I have been moved to use my skills and talents, as they remain, to advocate for a better future.
In that context, I began to find my passion—my 4th age —of taking on my own challenges and finding the power of art.Samuel Simon
How has working on dementia-related art changed you?
I call this my “4th Age” of life. It was around 2008 when I had a chance to work with an organization that was dealing with social change, and we incorporated art as a tool. Rather than policy papers and lectures, we also worked with music, theater, and paint, etc. In that context, I began to find my passion—my 4th age —of taking on my own challenges and finding the power of art.
I have said that I was suffering from post-spiritual distress and anticipatory grief after my wife’s close call. The performance of Dementia Man has shown me its power to change and help people come to terms with these challenges. I discovered the meaning of love in life through my art, and the gift of being a love partner, and now, I believe, as the patient. I believe that I can find new meaning in this journey, not one I would want, and that there are hidden gifts to be offered to the world.
How has the work been received?
Here is some of the feedback in the development process: “Very touching and compelling, I was riveted.”
“You have a charm that shines from the stage and makes us feel welcome.”
“This is a very important piece!!!”
“I loved the complete unpredictability of the show. … It’s an unprecedented theatrical experience to hear Sam’s story…”
“Congratulations to Sam Simon on his brilliantly conceived new work! All were in agreement on the vital importance of this message. A unique first hand account from a charismatic storyteller.”
Note the work was also featured in grand rounds, as the Director of the Center for Medical Humanities, Compassionate Care and Bioethics, Stephen Post, loves the work.
This work is dedicated to: I plan to dedicate the opening show to the memory of Neil Jacobson, who died recently, and was a leader in the disability movement.