MIDDLETON, Wisc.— Bill Nelson has been swimming laps at Harbor Athletic Club for more than 30 years. The 73-year-old retired teacher was once a lifeguard. But over the last few years, he has been showing signs of dementia.
“There are so many considerations involved in going somewhere when you have a loved one with dementia,” says Bill’s wife Ginny. While Bill can no longer drive himself to the club—the risk of dementia-linked disorientation while driving is too great—Ginny, his wife, can drop him off. But there are still risks. Dementia isn’t predictable. Will he become confused while there? Overwhelmed? Embarrassed? Such worries can lead to social isolation: It simply becomes easier to stay at home.
But businesses like Harbor Athletic Club are working to ensure that their facility is a safe place for people like Bill. They are part of a grassroots movement gaining traction across the country to create communities that are “dementia friendly,” or more supportive and safer places for people with dementia to live.
Last year, staff members at the gym went through an hour-long training to learn how to recognize signs and symptoms of dementia and respond safely and respectfully. So if Bill suddenly becomes confused or forgets where he is, the staff is prepared for such episodes and knows how to distract and redirect him until Ginny picks him up.
The result is that Bill can keep swimming twice a week while his wife has a break. “That’s the one place I feel comfortable just dropping him off,” says Ginny.
Communities respond to growing rates of dementia
More than 5.7 million Americans are living with Alzheimer’s disease, a number that is growing rapidly as the country ages. At the same time, people are living at home longer, rather than moving to assisted living facilities, putting greater pressure on communities to respond to the needs of neighbors with Alzheimer’s and other forms of dementia.
Across the country, thousands of business owners, police officers, bank tellers and college students and others are training to learn to recognize signs of cognitive impairment, and how they can assist someone who is demonstrating impairment.
Signs to watch for could be difficulty counting change, getting lost in a conversation, or asking for the same information over and over again. Some people with dementia have trouble with depth perception and seeing color contrasts and can therefore appear unsteady or clumsy. Many experience mood changes, and can act suspicious, depressed, or anxious, especially when they are away from home.
The trainings, offered by local Alzheimer’s and dementia advocacy groups, advise people to slow down and be more patient and plain-spoken, and to offer help rather than look away when they see someone struggling. Instead of arguing with a longtime customer that he doesn’t have any items to pick up, a local dry cleaner might give him an old shirt to take home knowing it’s the disease and not the man that’s arguing. And when a diner has difficulty finding the right words to order her meal, rather than becoming impatient a server might suggest options to determine the right choice.
Today, there are about 250 dementia friendly communities in 48 states, according to Dementia Friendly America, a national support network. After meeting standards set by the national network — or individual guidelines created within their community programs — businesses earn the right to call themselves dementia friendly and display signs confirming their participation. Communities often post registries of the businesses or institutions they consider dementia friendly, which typically means that at least 51 percent of employees have undergone training.
While there are some basic commonalities in the movement, the initiatives are playing out differently in every community. In Montgomery, Ala. the First United Methodist Church created a respite ministry run by 120 trained volunteers, where caregivers can drop off their loved one for a few hours. And in Montgomery County, Md., police officers distributed wearable ID bracelets for those with dementia so first responders can quickly identify someone who may be lost or need medical help.
An international movement
The concept of dementia friendly communities began in Japan more than a decade ago, according to Alzheimer’s Disease International, a coalition of Alzheimer’s associations, working with the World Health Organization. The United Kingdom got interested soon after, and today there are efforts to create dementia-friendly communities in more than 40 countries.
Through a parallel movement known as Dementia Friends, more than 30,000 volunteers in the US and millions more internationally have gone through a similar training in their community or on-line to become more responsive in their daily lives to people with dementia who might need help locating their bus pass or making change at a café or finding their way home.
In the United States, the movement got a boost in 2015 with the launch of Dementia Friendly America, modeled after a successful program in Minnesota, at the White House Conference on Aging. The newly minted initiative announced six pilot programs including those in Denver, Santa Clara County, Calif. and the state of West Virginia.
Funding for the community initiatives varies, with a mix of public and private funds underwriting costs of training and technical support. Nationally, the Administration for Community Living (ACL) has awarded grants totaling almost $11 million for Alzheimer’s-related programs including dementia-friendly community initiatives.
Dementia Friendly America provides tool kits that are specific to different sectors, from banking to health care, that communities often use to get started. To join the network, cities need to show support from leaders in at least three sectors (such as business, government and health care), demonstrate how they are using dementia friendly practices, and agree to share their progress with the network. They also need to include people with dementia in the leadership of the program.
“We look for a certain dynamic to show that they are committed to the work.” said Meredith Hanley, project director for Dementia Friendly America.
It’s difficult to gauge the impact of the movement. “No one has found a metric, let alone the resources to measure it,” according to Michael Splaine, principal at Splaine Consulting and former director of state affairs at the Alzheimer’s Association. Ultimately, he says, its impact is based on raising consciousness: “Just adding a little more thoughtfulness among the public.”
Other challenges to the movement include reaching a critical mass of business owners, particularly in larger cities. Also, as many as 40 percent of people living with Alzheimer’s or dementia do not have an official diagnosis making them, or their caregivers, unlikely to seek out the kind of services or respite care from which they could benefit.
But a growing number of stories illustrate benefits.
Middleton’s efforts predate the national push. The town of about 20,000 people passed a resolution to become dementia friendly in April 2014. In partnership with the Alzheimer’s & Dementia Alliance of Wisconsin they made a commitment to create awareness, decrease stigma, and improve the quality of life for those with memory impairment and their caregivers, by educating employees in city businesses on how to recognize and best assist a person with dementia.
They began by training their own town employees. More than 50 businesses soon followed.
Todd Passini, of Middleton’s Harbor Athletic Club, says the training has helped better serve long-time members like Bill, and also attract new members. “We understand that maintaining independence is super important,” he said.
Ginny Nelson says with so many businesses in Middleton that have signed up for the training, Bill enjoys getting out not just for his workout but to his favorite restaurant or on shopping excursions with her. “When I see that ‘Dementia Friendly’ sign on the door, it makes me relax a little,” she says.
Sue Sveum is a writer whose experience helping her aging parents led to a specialty in writing for and about seniors and their families. She lives in Madison, Wisconsin with her husband and their Golden Retriever, Wrigley.