As medical science races to cure dementia, storytelling and other creative activities promise a better quality of life for the millions already diagnosed.
When you imagine people with dementia gathered in the day room of a nursing home, the phrase “Broadway show tune” doesn’t usually come to mind. But as playwright and cultural critic Anne Davis Basting watched with amazement, people around her were singing Oklahoma! with gusto. Even the usually standoffish staff joined in.
“We went from 6 weeks of nothing working — literally dead silence — to a 45 minute story that included a rousing rendition of Oklahoma,” says Basting. “And I looked up, and around this table in the common room were staff that I had never seen. And they were laughing and singing with us.”
The magic ingredient turned out to be a group storytelling technique now known as TimeSlips. It’s just one of the creativity-based techniques Basting describes in her new book, Forget Memory: Creating Better Lives for People With Dementia. From storytelling to songwriting, these approaches allow people even in late dementia to make meaningful connections with each other and the caregivers and families around them.
Basting is currently Director of the Center on Age & Community at the University of Wisconsin-Milwaukee and an Associate Professor in the Department of Theatre at the UW’s Peck School of the Arts.In 1995, she had recently completed her PhD in performance studies at the University of Minnesota. Her thesis work focused on the senior theater movement and how acting had transformed the experience of aging of the performers, their families, and the audience.
Basting recalls interviewing a woman in the Geritol Frolics, a variety show in Brainerd, Minnesota, with performers 55 and older. “I asked her what she had been before the Frolics,” Basting says. “And she said, ‘I was a widow.’ So I asked her what does a widow do? And she described what a widow does: She goes to church. She talks to her children on the phone. She watches television. So I said now what are you? And she said, ‘I’m a comedian.’”
In 1998, Basting published her thesis as a book, The Stages of Age: Performing Age in Contemporary American Culture. She explains how the new roles played by elder actors challenged what it meant to be older in America. “Playing a new role literally broke open that mold,” she says. “It both redefined the older adults for the audience and the community as well as for themselves.”
Falling off the stage
As Basting interviewed older performers, they would occasionally mention former stagemates who had to leave because of memory problems. “They just fell off the stage entirely and of everyday life as well.”
Could performing help these people, too? Basting volunteered at a nursing home with a dementia unit. Her first day brought a strong dose of dementia’s dark side. “It was nightmare place,” she recalls. “It was really hardcore. Alarms going off. Chaotic day rooms.”
To work with the residents, she drew on theater workshop techniques developed for people with intact memories. The reaction: silence. “A lot of theater for older people was reminiscence based,” she explains. “With that group, in that setting, it just did not work.”
So after weeks of frustration, she tried something radically different. Instead of recalling information from their pasts and creating theater, the residents would be asked to tap into their imaginations. “The first time I did TimeSlips, I just tore a picture out of a magazine and said forget trying to remember. Let’s just make it up.”
Fred Astaire from Oklahoma
Basting brought in a big newsprint pad and some markers. She showed the residents a photo of the Marlboro Man and asked questions, writing the answers on the pad. Name? Fred Astaire. Where does he live? Oklahoma. (Someone starts singing.) What does he eat? Two fish for breakfast, two for lunch, two for dinner.
The story went on for 45 minutes as Basting wove the fragments into a narrative. Vacant stares dissolved into smiles. Nursing home staff drifted in. Somehow this group of detached and confused people had found a way to interact with each other and the world. The “diseased” patients corralled in the facility by motion detectors to prevent wandering had rejoined the community.
Basting wrote a play based on the workshops. In 1997, elder actors performed TimeSlips for the first time in Oshkosh, Wisconsin, where Basting was teaching at the time. It debuted in Milwaukee in 2000 and in New York City in 2001.
Back from the ice floe
Today, TimeSlips provides training to facilitators who conduct workshops in a variety of settings. Some 30 trainers are working at 12 training bases, typically a retirement home or nursing home/assisted living facility. Although the program was originally developed for people with dementia, people with functioning memories also participate. The next step is to put the training online and expand the program into the home care setting, where 75 percent of people with dementia live.
TimeSlips is not the only way to use art and imagination to improve the lives of people with dementia. “Songwriting Works,” one of the programs Basting describes in Forget Memory, uses a collaborative setting to create original songs. Other programs involve dance or visual art.
One the most powerful effects of these therapies is their ability to pull people with dementia out of isolation and back into society. “At the core of this entire thing is just learning how to be in the company of people with dementia,” Basting says. “In the medical framework, you’re tending to the disease. In the cultural framework, we don’t know how to do anything except talk and email. So they are just out. They are set adrift on the ice floe, and we’ve got to find a way to bring them back to shore.”
The TimeSlips experience contrasts sharply with the tragic side of dementia people receive in the media. In hopes of raising public awareness and build support for research and eventually a cure, Alzheimer’s advocates describe a kind of living death in which the person all but disappears as memory and other brain functions succumb to the progression of the illness.
Basting worries that the narrative of tragedy and loss may inadvertently worsen the stigma and fear associated with dementia. That could leave people living with the disease even more isolated.
Also, the tragedy/loss story crowds out another one: that moments of hope, meaning, social connection, and even humor are possible even in the midst of dementia. “I’m just asking for balance,” Basting says. “Yes, it is terrible, and I’ve seen it. But the thing I don’t see in mainstream representations is the side I’m trying to bring out.”
Alzheimer’s disease, the most prevalent form of dementia, afflicts some 19 million people worldwide. Beginning as impaired memory, the disease gradually progresses to the point of round-the-clock care and, eventually, death. The process can take a decade or more from diagnosis.
A cure is needed, but so is compassionate care for the millions already with dementia. What these people will need is a life worth living. “I think we are much more afraid of meaninglessness than death,” Basting says. “You might live with this disease for 15 years. It cannot all be a meaningless void. Either for you are your family or the people who are caring for you, it has to have some kind of meaning.”
- Anne Basting’s Forget Memory Blog: www.forgetmemory.org
- TimeSlips Creative Storytelling Project: www.timeslips.org
- UW-Milwaukee Center on Age and Community: www.ageandcommunity.org