Connecting in the Land of Dementia
The Book Brigade speaks with dementia advocate Deborah Shouse
Posted Sep 08, 2016
Creativity and playfulness—found in such activities as music and shared storytelling—can help open a window of connection between people living with dementia and their loved ones. They go beyond the rational mind and tap into communicative powers still available to those who can no longer remember their grandchildren’s names or drive to the grocery store.
Are there any key misconceptions about what it's like to connect with someone who is living with dementia?
There’s still a social stigma related to living with dementia. Too often, people see the disease and not the person who is living with the disease.
Here’s something that Lori La Bey, founder of Alzheimer’s Speaks, said: “Would you try to force a person with a broken leg to walk up three flights of stairs? No, you would find an elevator. We need to do the same for people living with dementia, make accommodations for their physical, mental, and psychosocial changes.”
Can you describe one or two things about music, visual art, and other forms of creativity that make them so valuable in these relationships?
The expressive arts go beyond the rational mind and tap into the part of the brain aligned with creativity and imagination. They invite imagination, not remembering. They ease the pressure and stress that people with memory loss can feel when trying to communicate.
I interviewed dozens of experts from around the world and the book is brimming with easy ideas for friends, family, and professional care partners. Here’s an excerpt from the music section: Concetta Tomaino, Ph.D., a founder of the Institute for Music and Neurologic Function (IMNF), says, “We believe music has unique powers to heal, rehabilitate, and inspire.” According to Dr. Tomaino, music is an art form people associate with major life moments. The associated memories and feelings are preserved and evoked when we hear those tunes again.
“We may forget facts, but we never lose feelings and associations,” she explains. “Shared music can forge a sense of connection between people. Care partners can experiment to see which songs mean the most to their partners and why.” Even when people are nonverbal, the right tunes can lead to deep moments of bonding and can create a sense of belonging.
Playwright Anne Basting developed TimeSlips, an internationally acclaimed program of creative story-telling. “TimeSlips replaces the pressure to remember with the invitation to imagine,” Basting says. “This simple shift can balance the relationship between the care partners and the person living with dementia. By doing something creative and new together, you’re focusing on strengths and participating as equals.”
When a partner struggles to find the right words or stumbles over a phrase, many care partners feel an impulse to correct, fill in the facts, and offer the answer. When that happens, the partner may revert to silence, worried her language is garbled or that she may blurt out the wrong thing. But with TimeSlips, people who have difficulty communicating can have fun with sounds, gestures, word fragments, and whole sentences.
Do you sense that public awareness about the challenges and opportunities involved in these relationships is spreading?
With more than 5 million Americans living with dementia and more than 15 million family care partners, one in three people knows someone who is living with memory loss. There are some excellent advocacy groups and powerful voices from those who are living with dementia, speaking out to educate and inform. The more we all talk about this complex and meaningful journey, the more we share information and ideas, and the more support friends, family members, and communities can offer.
What inspired you to write this book?
My journey with my mother inspired me to write this book. I was always looking for ways to stay connected with her. When I learned about all the work going on in the field of creativity and dementia, I wanted to share those innovators with others.
The title of your book refers to a "Land of Dementia." How did you arrive at that metaphor?
One of the most important concepts I learned when communicating with my mom was, “Meet her where she is.” If she is talking about her long-dead brother, don’t correct her with a lecture on reality orientation. Ask her open-ended questions that invite out her thoughts and memories. I often thought my mom was in a different land, one that was rich with emotion, spiritual dimension, and creativity. I felt so lucky when we met in that space.
What’s the most surprising thing you discovered while writing the book?
I was surprised by the number of expressive therapies available and the number of creative people who are working with them. I was also surprised by how adaptable these ideas are for people of varying abilities. I was delighted with the generosity of this creative community. Every person I reached out to was willing to share their expertise.
Who would most benefit from reading your book?
It’s for anyone who would like to connect with someone who is living with dementia. It’s also for people who want to stay connected with their creativity. The ideas and activities in this book benefit family and professional care partners, friends, family members, health care professionals, spiritual leaders, and other.
A friend whose husband is living with dementia told me, “This book helps me answer the question 'What are we going to do all day?’” Another friend said, “Now I’m not so nervous about visiting my friend who is living with dementia. I am going to bring along several activities to explore.”
What would you like to see happen as a result of the book?
I was so inspired by each of the experts I interviewed, and I hope my readers are inspired as well. I would like to see people with dementia feeling enriched, purposeful, valued, and in meaningful relationships throughout their lives. I would like to see more people spending more time truly connecting with those who are living with dementia. I would like to see care partners, family, and professionals enlivened and enriched from doing these activities together. I would like to see friends using these activities to bond and engage and have fun during their visits. I would like to see families strengthened by sharing these activities and the social stigma replaced by respect, understanding, and appreciation.
About THE AUTHOR SPEAKS: Selected authors, in their own words, reveal the story behind the story. Authors are featured thanks to promotional placement by their publishing houses
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