“BMC gives me a foundation from which to dream, deeply connected to the ground, water and sky. Conversations compelling bigger, deeper visions of my/our work or just simple exchanges of wonderments happen around every corner of the kitchen, garden, living room, and walking paths,” she says.
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 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.
“Sometimes we’re the only person they see all day,” said Johnny, the Meals on Wheels deliverer who graciously let me shadow him on his route, “Can you imagine that?” Johnny is exactly what Meals on Wheels recipients need: a warm, smiling face who remembers them. During their 20- to 30-second exchange at the door, he asks after these older people. He cares.
Arts Can Also Reduce Social Isolation
More than ever before, older Americans are living alone. AARP has rightly called “social isolation” one of the biggest challenges we will face as an aging society. Research tells us isolation is the health-risk equivalent of 15 cigarettes a day. But its effects can be ameliorated much more fully than a pack-a-day habit. We can do something about it.
Imagine this instead: When you receive a meal, you also get an added bit of nourishment — an invitation to creatively interpret your world.
Johnny and his team of drivers at Beulah Brinton Community Center in Milwaukee helped my team of artists design and deliver a bit of extra nourishment through the meal system. During 2012-2014, we delivered 45 thought-provoking, poetically phrased questions that invited people to think of themselves and their worlds a little differently. We asked:
- What do you treasure in your home? And why?
- What is the most beautiful sound in your home?
- What are the sounds of your neighborhood?
- What is something you could teach someone?
- What is something you would like to learn?
Elders could respond by voicemail or hand deliver the question card back to their meal driver. Over the two years, we created 21 radio segments out of the responses so they could hear and feel part of something bigger. We offered and delivered Artistic Housecalls. The project, called Islands of Milwaukee, culminated in a performance and art installation at City Hall for more than 3,000 people.
Our goal with the project was to test the waters. Could we pour creative engagement into care systems to reach elders wherever they live? Could social connectedness, meaning and purpose — those magic ingredients in well-being — be delivered by phone? By Meals on Wheels? By visits with a home health aide?
A Key to Connection
The answer is yes. This was a pilot, a first run at building a collaborative network and to see if it was possible, so we didn’t get hard data on whether folks felt less isolated. But the drivers felt the impact. They loved reading the cards. They loved seeing the handwriting, which revealed the labor and thought of their elder friends.
The arts are poised to be one of the most powerful tools we have to improve the quality of life of our elders and bring them into connection with their communities. There are great programs emerging to build real artistic skill among our well-elders, drawing people into social connection at libraries (Lifetime Arts), museums and community/cultural centers across the country. But the arts offer us so much more. The invitation to be creative can, and should, be poured into the water of our care systems. They give care partners — whether they are delivering meals, medicine, mail, housekeeping or transportation — a way to engage in meaningful ways that go beyond the well-trod paths of weather, sports or children long gone. They invite us to see our world, ourselves, and each other differently. They invite us to open, grow and connect.
Hospitals, home care, long-term congregate care, Meals on Wheels, libraries and their Big Read programs, museums and their cultural programming, schools and their educational programming — all can be linked to our care systems.
The arts can, and should, be the soft-tissue of our care systems. They can bring us out of isolation and into relationship as individuals, as groups and as organizations. This is what I call the Creative Care Revolution. That is my waking dream, and TimeSlips (a non-profit that brings creativity into aging-care systems) is working on it today, tomorrow and the next day.
First published and copyrighted by Next Avenue, a news service for Americans over 50.