CHIPPEWA FALLS, Wis. – Buying a latte at this colorful coffee shop was once a simple, daily routine for Julie Anderl, whose law office was nearby. But as her dementia grew, it became a puzzle of choices.
The women at 4:30 AM Coffeehouse gave Anderl, 55, time to choose her beverage and helped her sort through change, said her mother, Janet Rubenzer-Pike, 74. But elsewhere, store workers either tried to take advantage of Anderl’s confusion — pushing credit cards or clothes that didn’t fit — or ignored her.
So when Rubenzer-Pike saw a blurb about a small town retooling itself to be dementia-friendly, she clipped it out. Less than a year later, employees at a dozen Chippewa Falls businesses, including 4:30 AM, have been trained to recognize the signs of dementia, such as trouble counting money, and how to respond. Next on Rubenzer-Pike’s list: the county.
“I just thought, wouldn’t it be wonderful if everybody got the treatment that Julie’s gotten in Chippewa,” Rubenzer-Pike said.
A smattering of cities across the country are becoming better equipped to support and integrate the swelling number of Americans with dementia, which affects memory and critical thinking skills and can be isolating. Today 5 million Americans live with Alzheimer’s disease; by 2050, that figure should jump to 16 million, according to the Alzheimer’s Association. Keeping folks with memory problems in their downtowns might involve rethinking the design of a grocery store, offering family bathrooms or posting bigger, simpler signs. But some cities in Minnesota and Wisconsin, including Chippewa Falls, pop. 13,700, have focused on educating workers to spot the signs of dementia and respond with respect and patience.
“All we do is what human beings are supposed to do — help each other out,” said Tracy Heidtke, co-owner of 4:30 AM.
Common practice in U.K.
Signs in the shops along Bridge Street, this downtown’s main drag, advertise jazz, cheese curds and fishing rod repair. In recent months, businesses have posted a new window cling, with a purple angel and a message: “We are a Dementia Friendly Business.”
Uncommon in the United States, the purple angel is “everywhere” in the United Kingdom, where dementia-friendly efforts erupted years ago, said Lori La Bey, founder of Alzheimer’s Speaks, a St. Paul-based business working to change the culture around dementia. The angel sits not only in store windows but on buses, trains and even trash trucks, she said. “Over there, it’s almost like they’re embarrassed not to be part of the cause.”
Alzheimer’s work here has long focused on a cure, said La Bey, whose mother lived with memory loss for more than three decades until her death in February. “But a cure is many, many years out. And people need help now.”
Since the United States released its first national plan to address Alzheimer’s in 2012, communities have kicked off their own efforts to become “dementia-capable.” In Minnesota, ACT on Alzheimer’s, an advocacy group helping the state prepare for the increasing burden of age-related dementia, has given communities grants for their work, then used their experiences to create a tool kit to help others reproduce their process.
The United Kingdom offered wonderful examples of dementia-friendly communities, but “there wasn’t any sort of tool of how to replicate it from community to community,” said Olivia Mastry, the executive lead of ACT on Alzheimer’s. “We added the replication ability.”
The tool kit, which first instructs communities in building an “action team,” has sped things up, Mastry said. The group first gave grants to four communities. This year, it awarded 32.
They include Northfield, Roseville and Rochester, where a 60-person team recently formed. Goals vary.
“What people sometimes get caught up on is the notion that we have places for people with dementia to go to,” said Angela Lunde, the Mayo Clinic’s dementia education specialist. Dementia-friendly shouldn’t just be about “places we house those with dementia,” she said, but making everyday places inclusive.
Just as cities and businesses provide ramps and elevators for people with physical impairments, people with dementia need “cognitive ramps” that can help them live independently and safely, Lunde said.
Walker, Minn., a retirement community in cabin country, was the first rural town to work with ACT on Alzheimer’s. Business owners there “knew it was good for their businesses to be a welcoming community,” said Melanie Deegan, general manager at May Creek Senior Living Campus. Training for employees begins this week.
Doing this work in a rural area brings both benefits and challenges, she said. Because people retire to Walker, oftentimes their children live elsewhere, she said. “In the early stages, people do a good job covering for it,” Deegan said. “Kids don’t know how bad it is until they visit.
“On the flip side,” she added, “we all know our neighbors.”
A small-town problem
The problem of dementia is acute in small towns, as “rural living has been associated with an increased risk of Alzheimer’s disease,” according to a report by the Minnesota Department of Health. “There is an urgent need to better prepare community members and health care systems for dementia, particularly in rural communities.”
Because the elderly make up a larger share of rural counties across the state, the problem of dementia is accentuated there.
“So with the baby boom generation aging, as a state and as a country, we’re going to all be responding to issues of aging — including dementia,” said Mark Schoenbaum, director of the department’s Office of Rural Health and Primary Care. “Rural Minnesota is responding to them now.”
All but one of the eight cities that have started dementia-friendly campaigns in Wisconsin have populations of less than 20,000. Susan Konkel, with the Wisconsin Department of Health Services, visited each to build a tool kit for that state and plans to include Chippewa Falls as a success story.
But other cities’ efforts have stalled, said Konkel, coordinator of the state’s Healthy Brain Initiative Project. In Fort Atkinson, the initiative “isn’t really taking off,” she said, partly because it hasn’t involved public health or hospital officials — or family members. In Chippewa Falls, it helps that people know Anderl, who, in addition to having a longtime law practice, was once president of the Chamber of Commerce and twice ran for judge.
“Everybody knows Julie and Janet,” said Teri Ouimette, executive director of Chippewa Falls Main Street, Rubenzer-Pike’s first stop after clipping the newsletter article. Ouimette and Rubenzer-Pike formed a group to figure out a plan. Retired nurses and others offered to do training. Volunteers at St. Joseph’s Hospital paid for purple cards that can be passed discreetly to shop workers: “My family member has Alzheimer’s/Dementia,” they say. “He/She might say or do things that are unexpected. Thank you for understanding.”
Since being diagnosed with frontotemporal dementia, then early onset Alzheimer’s, Anderl has given up both her law and driver’s license. But Anderl’s friends have helped her stay active — bringing her to water exercise, yoga and the library, said her husband, Brian Hefty. On a recent morning at 4:30 AM, Anderl spotted a friend at the counter and rose to give her a big hug.
“I’ve been very blessed with so many people in town along with people around here,” Anderl said later, putting a hand to her chest. “I think our area that we have, people really care about each other.”