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KC Checkup: 6 Questions For Deborah Shouse About Connecting With Dementia Patients

Dan Margolies
Heartland Health Monitor
Kansas City writer Deborah Shouse says there are many ways for caregivers to connect to dementia patients through the expressive arts. She's standing next to paintings by artist Esther Boyd on view at KCUR.

Dementia is an impairment of brain functions marked by memory loss and personality changes. It affects an estimated 4 million to 5 million adults in the United States annually and, as the elder population increases, is likely to have a growing impact in the future.

Alzheimer’s disease is the most common form of dementia, affecting as many as 5 million Americans in 2013, according to the Centers for Disease Control and Prevention. That number is projected to rise to 14 million by 2050.

Kansas City writer Deborah Shouse wrote about dementia in her 2013 book, “Love in the Land of Dementia,” which chronicled her experience taking care of her mother after she was diagnosed with Alzheimer’s disease. Now she’s out with a new book that's a practical guide for caregivers on engaging those living with dementia through activities designed to tap their creative potential.  

As part of our occasional KC Checkup series, we spoke to Shouse about her new book.      

You published a book a few years ago about your experiences caring for your mother after she started showing signs of dementia. Now you're out with a new book, “Connecting in the Land of Dementia,” about how to connect with people living with dementia. What inspired you to write this book?

Well, one of the most important things to me with my mom was maintaining our connection throughout her dementia journey. And those meaningful moments of connection matter so much to me and I know to all caregivers. This book gives caregivers concrete ways to stay connected to creativity and imagination throughout the dementia journey.

This book is kind of a practical manual with suggestions on how to engage someone with dementia. I think a lot of people may be under the impression that, at least in the more severe cases, that's simply not possible.

That’s one of the exciting things about talking to dozens of experts around the world who are doing this work, using creativity and imagination when the rational brain is not functioning at its highest. And they have shown that music, art, puppetry – there’s so many ways you can continue your connections.

Kindly describe some of the ideas and activities listed in your book that can be used to relate to people living with dementia.

Music is a great one. There's a music in memory program, where you find people's favorite songs and put them on an iPod shuffle and they listen and it just can revitalize them. There’s painting, there’s drawing, they’re simply making lines. Laughter is another great one. Inviting laughter boosts people spirit. Therapeutic puppetry, cooking together. Those are just a few of the many different ways you can stay connected with someone you're caring for.

Can you describe any particular experience you had with someone living with dementia, Deborah, that is particularly vivid in your mind and how you reached that person.

With my mom, singing together it was always a very important part of our lives. And so when I figured out to continue this as she was very deep into her dementia, it was very moving and connecting for me. She would sing along with me as she could, but also she would look into my eyes as I was singing and so there was a soul connection that was very profound and very different from the way we had connected in our earlier lives.

It sounds like the kinds of activities you're talking about in this book are important both for the person living with dementia and the caregiver.

You're so right. The caregiver needs to boost their own creativity and reduce their own stress. And so when you do these together, you're taking care of both of you through exploring these various expressive arts.

It sounds like it's more about the process and not the result of the activity that's important here.

That is a great comment. You don't want to care about what happens at the end. You want to enjoy the proceedings and so have fun. If you're arranging flowers, have fun with the texture of the flowers. If you're chopping vegetables together or tearing lettuce for a salad, enjoy the activity. That was a big lesson I learned from my mom – is how to be in the present – and it's a spiritual practice we all hope to find. I found it through paying attention to my mom when she was living with dementia.

Dan Margolies has been a reporter for the Kansas City Business Journal, The Kansas City Star, and KCUR Public Radio. He retired as a reporter in December 2022 after a 37-year journalism career.
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