Published in The Plain Dealer (centerpiece of the Health section). Print version (PDF) PAGE 1 and PAGE 2.
Also published on Cleveland.com: http://www.cleveland.com/healthfit/index.ssf/2012/08/alzheimers_dementia_program_su.html
By Casey Capachi
CLEVELAND, Ohio –Charlie Farrell and his daughter, Katie Norris, want to make life better for those living with memory loss and brain illnesses, just as they have been doing for their own family.
Today, they are doing so by creating a story with a few seniors gathered around a table inside the arts and crafts studio at the senior living community, Westlake Village.
“You are going to build the story, and we’re just going to be the props,” explains Farrell, 75, a retired vascular surgeon who worked at Lakewood Hospital, to the group now huddled over their black-and-white photocopies of historical photos.
“There are no wrong answers,” Farrell continues, as his daughter smiles warmly across the table.
Norris, 33 and a minister at West Shore Unitarian Universalist Church in Rocky River, types the group’s responses, and will later read them back as a story.
Those participating in today’s TimeSlips storytelling exercise represent just a few of the estimated 35.6 million people worldwide living with dementia. The World Health Organization says that number will double by 2030 and more than triple by 2050.
In Ohio alone, there are 230,000 people living with Alzheimer’s, the most common type of dementia. There are 5.4 million in the U.S., according to the Alzheimer’s Association.
The class participants — some residents of the community, some not — shout out the first thing that comes to mind when they look a picture, just as they are instructed to do.
Many agree that the men in the photo look like vendors at the West Side Market from their childhood days.
Charlie Farrell, standing, leads a TimeSlips storytelling class as part of the ArtCare program he and daughter Katie Norris, far right, run at Westlake Village retirement community. Farrell’s wife and Norris’ mother, Carol, is battling dementia.
“At West Side the good ones were in the front,” says a participant. “You’d get an opportunity to try and taste samples.”
Flipping to a photo of a woman feeding a boy with a spoon, Paul Allphin, who is 86, inspects the picture for a few moments before saying, “He looks like he has to take medication.”
His wife, Beverly, 84, looks over at him, smiling.
“For Paul,” she says, a retired chemical engineer who served in the Navy during World War II, “it’s always been hard to express emotions.” But the class, she says, helps both of them get out of the house to another setting. “And I think that’s stimulating to a certain degree.”
Beverly says she meets other caretakers she can talk to, which makes her feel less isolated, and Paul has opportunities to participate in the musical and artistic activities the ArtCare program offers, such as drum circles, meditative art and the storytelling exercises.
The goal of ArtCare is not to treat dementia or Alzheimer’s disease, cognitive illnesses for which no cure or effective long-term medication exists, says Norris. Rather, it aims to bring purpose and meaning into the lives of those living with memory loss, especially those in advanced stages of the illness — many of whom are cared for at home and have few opportunities to socialize.
Farrell says TimeSlips, a creative storytelling project designed in 1998 by founder Anne Basting, is able to reach people in different ways — some respond to scents, others to visuals and some to the neighborhoods they imagine the photos were taken in.
“By getting them [away] from using their memory and focusing on imagination, we encourage them to use those parts of their brain that are still functional. They build a story built on their imaginations,” says Farrell.
Farrell cites findings by Cameron Camp, director of research at the Center for Applied Research in Dementia in Solon. Camp has shown that you can reduce agitation, anxiety and depression in those living with dementia by providing creative activities that are hard to fail at — yet are still engaging.
“People think those who have dementia can’t respond to you,” says Norris. “So they leave them there to sit in front of a TV, and they are bored and they get agitated.
“Cameron has found that if you have activities for them there’s less agitation in their life, so it helps caregivers, it helps patients, and it decreases the amount of medication they could need as well.”
An important outlet for socializing
When Carol, Farrell’s wife, began showing signs of Lewy body dementia several years ago, a condition in which symptoms of Parkinson’s and Alzheimer’s manifest, the couple’s peer group began to diminish. Not, Farrell says, because “they actively didn’t like us” but because many were “afraid” or “uncomfortable trying to socialize.”
“We saw people not engaging with her. We thought, ‘If this is happening to Mom, you know it’s happening to other people,’ and hopefully we could help them as well,” says Norris, who moved into her parents’ home with her husband and son for several years to help care for her mother.
Norris says her mother’s biggest fear in life was getting dementia, as there is a family history of the disease. When her mother first noticed early symptoms with her vision — words flying off the page as she read — she insisted the doctor test her for neurological cognitive impairment. She also volunteered to retake her driving test, and although she passed, she chose not to drive for her own and others’ safety.
In 2011, Norris and her father founded the Carolyn L. Farrell Foundation for Brain Health. Illness of the brain, Farrell says, is an issue that hits close to home. Besides his wife’s battle with dementia, his youngest son is rebuilding his life after a traumatic brain injury over a year ago. And Norris lives with bipolar disorder and anxiety.
As a mental-health advocate, Norris regularly speaks about mental health issues to local churches and other groups. Norris also writes two blogs online: Moving in With Dementia, about her mother; and Bipolar Spirit, about her own journey with mental illness.
As a minister, Norris says that a lot of people ask her “why bad things happen.” But without her mother’s and her own illness, she and her family, “wouldn’t understand people enough to help them like we can.”
Until last summer, Farrell says, he and his wife enjoyed stationary tandem bike rides together, which was helpful for managing her Parkinson’s symptoms.
Although her condition has progressed rapidly in a short period of time, Farrell says, the thing she still reacts to most is people.
“We try to bring people to her that come as comfortable as they can be,” says Farrell. “It’s very much the same thing as what we’re doing here. If this institution didn’t make folks feel comfortable, they couldn’t communicate either.”
Listening to their story
Once everyone has had a chance to offer their thoughts on the photo, Norris takes a few minutes to organize her notes. She begins reading the story in her clear, strong voice. The title, she announces, is “Wonderland.”
The participants giggle as Norris continues and some recognize their contribution: Names they gave the shop owners in the photo, family dramas they imagined happening behind closed doors, the taste of the German rye bread they can still recall from the West Side Market.
Norris finishes reading the story, and the class claps loudly.
After Norris and Farrell say goodbye to the participants, they sit down at the table next to each other. Norris takes a deep breath. She has tears in her eyes.
Today is the first time her mother was unable to attend the class. Her illness has progressed, and it’s difficult for her to get out of bed or even to open her eyes.
“She won’t be back,” says Norris softly. “So I think that’s harder.”
“But,” says Farrell, glancing at his daughter comfortingly. “It’s more important that we continue than anything.”