Oct. 1, 2001 -- First, there's the photograph: an old black and white shot of a man riding a bicycle on a high-wire stretched between two New York City skyscrapers. Then there's the story behind it.
It goes something like this:
"The picture takes place recently in New Bern; you can tell it's recent because it has a 'citified' look. And it's gorgeous; you had to be there -- and will be there. It's in the fall; we can tell because it's darker. It's beautiful and there is a lot of red. The fellow who is on the bicycle is Birdie. Birdie is an artist wearing a new suit -- as honest as he can be. He's on a bicycle riding all across the country, looking for his mom and dad. And one day he'll find them and when he does, they'll hug and kiss. It looks like he might fall into the water; if he does then he'll drown. One time, he fell and he had to go to the hospital, and we said, 'My Birdie lies under the ocean.'"
At this point in the tale, one storyteller breaks into the song; one by one the others follow suit.
The story -- reminiscent of something "theater of the absurd" playwright Eugene Ionesco might have written -- was created by six or seven residents of the Bremen Jewish Home in Atlanta who are moderately impaired by Alzheimer's disease. They were helped along by Anne Basting, a fellow at the Brookdale Center on Aging at Hunter College in New York City and the project director of Time Slips.
Bumpy Road
Using a technique she pioneered, Basting leads -- and trains others to lead -- storytelling workshops for people with Alzheimer's and related dementias. The premise behind Time Slips is that creative storytelling helps open communication with -- and foster an understanding of -- people with Alzheimer's disease.
"I started out as a scholar, getting a doctorate in theater and doing research on older performing groups; separately, I had done some volunteer work with people with Alzheimer's," says Basting. "The older performers all talked about how their lives are transformed by this opportunity to perform: they get to become something new at a time in their lives when they didn't think that was possible. And I started wondering if that was possible with people with dementia, because so clearly the only role they can play is 'sick person.'"
In a Milwaukee nursing home, Basting developed -- through trial and error -- a technique that defined a new role for them, one in which they could express themselves. "I tried a bunch of exercises and none of them worked -- most were memory based," she says. "One day I tore out a picture of the Marlboro Man and brought it in with a big sketch pad and said, 'We're just going to make it up and I'll write it down, because I am tired of trying to jog your memory and it feels a bit cruel.'
"That day, it worked: it went on and on and on for an hour -- and these are people who hadn't spoken to me for weeks," she says. "So that's where I started realizing that's where they can channel their energy. People with dementia can't remember the facts of their own life but they can create and imagine. If you ask someone with dementia a question there is one answer and 99% of the time the pathway to that answer is broken. But if you ask an open-ended question that they can answer creatively, there are a zillion pathways for that to [travel] that are still there."
In a nutshell, the storytelling technique consists of gathering in a circle a group of five to eight people with Alzheimer's. The facilitator introduces herself to each and every resident then hands out copies of a provocative photograph -- one that is clearly posed, so the would-be storytellers don't get hung up on trying to remember nonexistent facts. Then the facilitator starts asking leading questions about what the photo is about, who's in it, what are they doing, etc., writing down everything they say. Periodically, she reads it back to them, incorporating any additional comments or changes.
Writing down all of their thoughts, no matter how nonsensical, and repeating their words back to them are very important parts of the process. "They start to trust their own ability to speak again and to make meaning," says Basting. "Someone is getting what they are saying at a point [in life] where everything they say is [thought to be] nonsense.
"When you are quoted, your words have more meaning because they are taken seriously and they are being validated. That never happens to them," says Basting. "And when you are echoing back, you echo back how they are saying it too -- not necessarily just the words but the emotional content -- with urgency, with satire."
At the end of the session, the facilitator thanks each and every one of the participants for helping out. The stories are then typed up on the back of each photograph and mailed to the nursing home, where they are kept as well as distributed to the participants' families.
One in a Million
"Why this project is unique is important to understand," says Basting, who comes from a "wild, avant-garde art-theatre background" and loves theater of the absurd. "I am comfortable with it [but] when I started doing storytelling in Milwaukee, one of the recreational therapists said, 'You don't have any idea, but we are trained deliberately not to do what you are doing.'"
Basting says that art therapy -- colors, clay, music -- is all considered fine, but verbal creativity was an unspoken no-no.
"The fear is that [people with Alzheimer's] will start and never stop, because [the staff and family] are still trying to pull them back to reality and trying to make sense of this disease in some way. So the caregivers are invested in making sense of the world of dementia, which you can't do: it's a losing battle. You have to go to where they are [but] here is this last bit of fear of letting go into that world," she says.
"That's why I set up the ritual [storytelling] steps so clearly, so that there is a beginning and an end to this. It eliminates the fear that once they go into creativity mode they won't come back," says Basting. "But they aren't coming back anyway -- it's more about ouranxiety. So this program comes in at a different angle; it challenges that last hesitation."
What's in It for Them?
Basting says this kind of storytelling can be done with patients at all different stages of the disease, but it works best with those who are moderately impaired. "There are ways of bringing out people in late stage. If they can't speak or don't want to yet, I have them do things like pick a marker color for me to write with; if they only laugh, I'll put that into the story," she says.
"Early-stage people are people who still sort of have their faculties but are slipping, and they tend to be defensive about the facts. They will count how many buildings are in a photo and tell you exact things. They are more reluctant to go into the imagination," she says. "For people in the middle stage, the imagination is a fabulous tool and they revel in it. That is where all their memories live, too, and [storytelling] is a way of channeling them."
In addition to validating their thoughts and words, there are other benefits to engaging people with Alzheimer's, says Basting. "In a lot of the research I have done, if you keep them communicating in any way -- any kind of emotional outreach -- they are more alert and their quality of life is higher than if they start the internalization process," she says, referring to the point at which a person with Alzheimer's starts turning inward. "Once they start the internalization process, they die very quickly."
The benefits also extend to the nursing home staff. "To me the big thing is actually the staff's point of view," explains Basting. "If the staff is able to connect to people with Alzheimer's, it makes their job easier: it's the hardest job in the world to do, but if they feel they are emotionally connected it becomes this relationship rather than 'I have to change their diapers' and 'who cares what this person feels.' If they feel that personal bond they are more tender, more caring and the quality of care is higher."
It also helps family members once again see that there is a person still inside. "Usually what we do is go into homes and do about 10 weeks of storytelling; we get 20 stories and put them into a book and give it to family," says Basting. "They go, 'Oh, my God! And they see the potential for communication with them -- if they rethink their own needs for fact. A lot of time family members try to protect the memory of the person that 'was' and are more reluctant to indulge the creativity, the nonsense approach."
Taking the Story on the Road
In addition to holding 10-week workshops at individual nursing homes, Basting travels the country, conducting daylong training workshops and speaking to groups arranged by assisted living corporations -- that's part one of the project. Part two of the project is the public arts campaign. In Milwaukee, that involved a play and an installation with large pop-up books based on storytelling sessions alongside photographs of the storytellers.
In New York City, a play based on several stories will be running at HERE Arts Center between Oct. 30 and Nov. 18. Additionally, an art installation will be featured Oct. 15-Nov. 15th in the main lobby of New York City's Empire State Building. (For more information, visit timeslips.org.)
The hope for the public arts campaign is to raise awareness about the potential of people with Alzheimer's, says Basting. "There are all sorts of ways to share this with the community so you can increase volunteerism, so if this dementia occurs in someone's family they are not afraid of it," she says. "These people with dementia are totally isolated and it doesn't have to be that way."
The dream for the project, says Basting, is that people spread this to other cities. "I'd love for people to pick up on it, to be able to use creativity not only for those with Alzheimer's but also for the staff because the job is so hard," she says.
The Bottom Line
At the end of the storytelling session in Atlanta, staff members begin to wheel some of the residents back to their rooms; others stay behind to watch TV. Sam, one of the most active storytelling participants, is asked by a reporter what he thought of the story he and the others made up.
"You're going to tell me a story?' he asks.
No, he's told, you just told us a wonderful story. He smiles and nods -- maybe, just maybe, with a hint of recollection in his eyes. In the end, it's OK that he forgot: For one hour he was transformed and, with his imagination, he flew himself and others up to the sky.
