Re-Imagining Dementia
People often talk about dementia in terms of loss. Loss of memory. Loss of cognition. The fear of losing someone close to us… while their physical presence is still with us. Some dementia advocates and artists are pointing us towards a new perspective. Yes, dementia brings change, but also opportunities for new ways of relating and being innovative in what can be a surprising landscape of possibility. In a society not set up to embrace and understand cognitive difference, both those with dementia and their caregivers can enter a space of profound loneliness and a sense of being removed from the stage of life.
In a Disrupt Aging video series created by AARP, they share the story of Mike Lewis who was diagnosed with dementia at age fifty-two. After initial despair, he turned to watercolor painting for the first time in his life. Recognizing the gradual nature of the disease, he chose to open himself to what was possible. As he puts it, “The biggest thing I would want is to be included. To still feel like I’m part of society. Just because I have dementia does not mean my life is over or that I do not want to contribute to my community and society in general, and especially my family.” Interestingly, because dementia often effects the part of our brain where language resides, visual creativity may blossom. This can manifest in painting, sculpture or working in the garden. Bruce L. Miller, M.D., professor of neurology and director of the Memory and Aging Center at the University of California, San Francisco explains why: “We think that in patients with language loss, the visual side of their brain stops being inhibited by the verbal side and that allows their visual creativity to be released.”
Another researcher at the University of Wisconsin-Madison explores how arts can be integrated into dementia caregiving. When her grandmother suffered a stroke, Dr. Ann Basting realized that despite a change in verbalization ability, her grandmother still had stories within. She saw her own challenge as finding ways to still facilitate the stories into being in whatever form was available. She anticipated stories and imagination becoming a place where those with dementia and their loved ones could meet and connect in mutual growth and fun rather than being fixated on loss. She launched her work in an Alzheimer’s unit of a caregiving facility and “stumbled upon the power of improvisation as a way to create the role of storyteller and to invite people into expression and play and joy. It was truly transformative.”
Some dementia advocates facilitate connection through group performance in a process called Life Performance Coaching. In a New York-based project, coaches Helen Abel and Eileen Moncour lead a group of people with dementia, their children, grandchildren and caretakers, through a 4-day workshop called Creating New Performances of Memory Loss, Dementia, and Growing Older. Their intention is to transform the dementia experience from “stigma and fear to joy and growth.” One of the participants shared, “My mom is in the last stages of dementia. In these groups I learned to play and accept where she is. I worked to fully accept my mother with dementia and I learned how to enjoy and give to her much more. I also experienced how to be more giving and listening, and learning from folks in all stages of dementia and in caregiving roles.”
These are just a few examples of how creativity and playful imagination can deepen both our understanding and our ability to walk beside those on the dementia journey. With a dementia-friendly staff and a commitment to helping families care for one another, Hillsborough Wills & Trusts offers a guiding hand in Building Your Circle of Security.
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