When you receive a serious medical diagnosis, it can feel as though that diagnosis replaces your identity. I am no longer myself — instead, now I am cancer, or a heart attack or dementia. But even when we carry a diagnosis, we also continue to live our lives. We are more than our diseases and care plans.
People can live as long as 20 years with a diagnosis of Alzheimer’s disease. Family and professional caregivers, as well as community members, need tools to ensure that people with Alzheimer’s can be more than their disease. But how? Conversation can be challenging, in person and by phone. How can we stay connected and foster what has come to be called the “personhood” of someone with dementia or Alzheimer’s?
The answer is: the arts. A symbolic and emotional communication system, the arts don’t rely on linear memory and rational language. Rather, the arts engage our intuition and imagination. Their building blocks for expression are movement, gesture, words, patterns, sounds, color, rhythm, texture and smell — to name just a few. As access to rational language falters, a person’s imagination can soar.
Memory vs. Imagination
You don’t need to be an artist to use the arts for expression. These tools are available to everyone. Over the last 20 years, I have worked to encourage care partners to communicate with people who have dementia through creativity. The shift from expecting and correcting memory to opening and connecting through imagination can be profound, especially for family members. After years of distance, the arts can help families rekindle an emotional connection.
I remember in one workshop for caregivers, I was demonstrating how they could use open-ended questions to free up the imagination of people with dementia. I suggested the caregivers ask things like: “What would you like to name the person in this picture?” (versus, “What’s his name?”). Or, “When would you like this story to take place?” (versus, “What year is it?”). I noticed that one gentleman in the workshop got a worried look on his face, and I asked him if he was OK. “Yes, I’m just realizing that I’ve been driving my wife crazy for the last two years — insisting that she remember things,” he said. That was Charlie Farrell. He has since gone on to create the Carolyn Farrell Foundation to help family caregivers use the arts to communicate with loved ones with Alzheimer’s and other dementias.
Techniques To Help Us Be More Than A Diagnosis
How can you learn these techniques? There are a variety of resources.
My own work with improvisation and creative storytelling has free online storytelling tools at timeslips.org. The National Center for Creative Aging is at work on a series of video modules that share poetry, music, movement and visual art techniques. They will be available soon.
Some long-term care communities (though not enough of them) have arts and/or music therapists or partner with local arts organizations to provide programming. But the arts are more than a program to be added to an otherwise hectic day in the life of long-term care staff or family caregivers. They are a communication system that opens our emotions and invites us to share who we are with each other. The arts are a way of being in relationship that can ensure that we are more than our diagnoses.