People Power
How grassroots campaigns are easing the burden of caring for someone with Alzheimer’s—and improving patient quality of life.
Kathy Broggy heard shouts. Then she saw a crowd gathered around a car. Inside, an older woman, who had Alzheimer’s, had forgotten how to get out. But the bystanders’ well-intentioned yelling only made her more confused. “It just made me heartsick,” says Broggy, the activity director for a small eldercare company in Knoxville, Tenn. “Nobody understood the basic dos and don’ts about helping people with Alzheimer’s.”
A light bulb went off soon after when she heard about communities in Europe where city workers, shopkeepers and others learn how to interact with people with dementia in ways that provide help and preserve their dignity. We could
do that here, she thought. Last month, Knoxville became a “dementia-friendly” city. Signed on to support simple, citywide training are dozens of representatives from city and county government, major hospitals, the local Alzheimer’s Association and the Pat Summitt Foundation, started by the beloved University of Tennessee women’s basketball coach after disclosing her early onset Alzheimer’s in 2011.
“We’ve done it with just a group of people who wanted this to happen,” says Broggy.
The Power of Many Helping Hands
Broggy’s tale illustrates that the big story about Alzheimer’s today is actually a thousand little stories. Lacking a cure or even meaningful treatments, those who bear the brunt of care are taking things into their own hands—and sharing their inspired solutions. Some reach hundreds or thousands at once. Others improve a handful of lives at a time.
This kind of grassroots movement is key to helping patients and caregivers cope with a disease on the rise. Every 67 seconds, someone in the U.S. develops Alzheimer’s, according to the Alzheimer’s Association; an estimated 5.3 million Americans of all ages already have the disease in 2015. One in three seniors
dies with Alzheimer’s or other dementia, it’s the sixth leading cause of death in the U.S., and it’s the only cause of death in the top 10 in America that can’t be prevented, cured or slowed, the association says.
Enter people power. “A lot of unmet needs are being responded to spontaneously— to fill the needs for inclusion, for less stigma about the disease and for more focus on quality of life,” says Lisa Gwyther, education director at Duke University’s Alzheimer’s Disease Research Center. “People want to give to others.”
Solving Problems
Many great ideas are born from nightmarish situations. Gary Joseph LeBlanc once left his father’s hospital room for just 10 minutes to get some fresh air. When he returned, a nurse was quizzing the elder LeBlanc, who was there for a surgery but also had Alzheimer’s, about his prescription history—and writing his wrong answers into his chart. “The poor man couldn’t even have told her if he’d taken a pill five minutes ago,” says LeBlanc, who realized in that moment that someone had to be with his dad constantly in the hospital.
Unaware staff, noise and a disrupted routine often agitate hospitalized people who have dementia, LeBlanc learned— putting them at risk for mistakes, restraints or sedations. His simple idea: Remind every doctor, nurse and orderly that a patient has dementia by placing a special sticker—a purple angel, the international symbol of Alzheimer’s—on their admission wristband next to their name. At the same time, train staff about disease basics and how to communicate more kindly and effectively.
After six years of lobbying administrators about his wristband project, Brooksville Regional Hospital in Hernando County, Fla., where his dad had stayed, became the first to adopt it. Seven more hospitals in four states will do the same this year, LeBlanc says. “Everyone says, ‘ Wow, why don’t we have something like this already?’”
Barbara Marion Horn’s nightmare began as Superstorm Sandy bore down on Long Beach, N.Y., where she and her mother, then 92, lived in 2012. During the mandatory evacuations that relocated them several times over a four-week span, her mother’s mild-stage Alzheimer’s got much worse. “If I’d only known the psychological trauma associated with moving a fragile older person, I would have approached our evacuation completely differently,” she says. That’s why Horn now advocates for senior-centered disaster preparedness, working with civic groups to create education and shelter-training materials and response plans that include older adults with dementia.
Enriching Lives
Other efforts focus on improving everyday life. Although the brain changes of Alzheimer’s can alter memories and personalities, families know that the person is still “alive inside.” That’s the name of a documentary screened at the Sundance Film Festival last year about Dan Cohen, a self-described techie who began bringing iPods with customized playlists to nursing-home residents, with remarkable results. Millions of people have seen a viral video of wheelchair-bound Henry Dreher, 94, swinging and singing along with Cab Calloway. Personalized music, Cohen has shown, calms agitated minds and triggers deep emotional recall, even into the late stages of dementia.
His organization, Music & Memory, furnishes donated iPods to more than 1,150 facilities in the U.S. and Canada, and offers guides for families on its website. “And it’s all spread by word of mouth,” Cohen says. “If pharmacists invented a pill that generated these results, every doctor would prescribe it and every family would want it.”
More grassroots efforts that are improving quality of life:
Story-power hour Librarian Tysha Shay often read aloud to her grandmother, who lived next door. Despite her Alzheimer’s, her memories were sparked, in particular, by old poems. Realizing that other shut-in older adults with dementia had no way to access library materials, Shay started an outreach program through Missouri’s Springfield-Greene County Library District. More than 1,500 people have attended these “Stories for Life” sessions at local retirement communities.
Shall we dance? “You’re never in a bad mood when you’re dancing,” says ballroom instructor Nathan Hescock of Rhythm Break Cares, a nonprofit in New York City that brings the restorative power of dance to people with dementia. Fourteen years ago, he was asked to help with a six-week dancing project at a nursing home in New York’s West Village. He kept coming
after it ended, inspired by the way movement and music bring joy and confidence to people with early and mid-stage dementia. “They know how to foxtrot, how to jitterbug—and not from watching Dancing With the Stars,” he says.
iPad memory books Jenny Rozbruch ached when vascular dementia left her vivacious grandmother, Frieda, a Holocaust survivor, barely able to communicate. Maybe the iPad
could help, the graphic designer thought. She packaged old family photos, Yiddish folk songs, Frank Sinatra trivia and other blasts from Frieda’s past into an app. Now called Grey Matters, the app lets users add personalized images and prompts to help family members engage with someone with dementia. Nearly a thousand people downloaded the free app the first month after its launch.
Building Connections
When Alzheimer’s drops in, old friends often drop out. Isolation is common. Families quickly realize they need others who get it. So they’re building ways to find them:
The never-ending class After social worker Bobbi Matchar held an eight-week education program at Duke University for people recently diagnosed and their care partners, the group grew so close nobody wanted it to end. So they called themselves “the Alphas” and three years later, still meet monthly at a local restaurant, along with later graduates of the Duke class.
“It creates a sense of community among people who didn’t choose to have this situation and who often have to quit their old communities at work and church,” says Matchar.
Drop-in tea& empathy “When people hear the words ‘support group,’ they focus on how there’s something wrong with them or they expect to sit and learn,” says Lori La Bey, who dealt with her mom’s Alzheimer’s for three decades. “I wanted a safe, supportive gathering where you could just be yourself with friends.” She created Arthur’s Memory Café, which meets twice a month at J. Arthur’s Coffee Shop in Roseville, Minn. La Bey pulled together sponsors including her own Alzheimer’s
Speaks advocacy group and a residential care home, which furnishes the coffee and treats. The world’s biggest support
group Bob DeMarco began a website after he moved to Delray Beach, Fla., in 2003 to help his mother, Dotty. His goal was to figure out what he calls her “Alzheimer’s World,” so he posted whatever worked: research news, his discovery of how morning light improved her mood, videos of her conversing with Harvey, a talking mechanical parrot he’d found. Today, his Alzheimer’s Reading Room has 5,000 articles and draws 195,000 visitors a month, who leave their own advice and give pep talks to one another.
After his mother died in 2012, DeMarco continued the site to honor her, he says. “Without that love and support we received from readers our situation would have evolved into heartbreak; instead, we experienced joy.”
Less stress, more joy— that’s also why Kathy Broggy galvanized her Knoxville, Tenn. community. Now her sights are even bigger: “I hope by next year, there will be an alliance of cities joining to become Purple Cities,” says Broggy, whose dementia-friendly community campaign began with a simple page on Facebook. “It just takes one person to grow something,” she says. That’s people power.