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.
Soon, baby boomers, the country’s largest generation, will be the oldest. A new movement is helping communities prepare by learning to be dementia-friendly.
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.
In response, a movement is growing across the country to create dementia-friendly communities. Business owners, police officers, bank tellers, college students, and others are training to learn to recognize signs of cognitive impairment, and how they can assist someone who is demonstrating impairment.
Middleton, Wisconsin, was an early adopter. In 2014, the town passed a resolution to become dementia-friendly, working with the Alzheimer’s and Dementia Alliance of Wisconsin. The city trained its employees and more than 50 businesses soon followed. Ginny Nelson, wife and caregiver to her husband Bill, has benefitted from Middleton’s efforts; Bill, a 73-year old retired teacher, has shown signs of dementia.
A former lifeguard, Bill has been swimming laps at the Harbor Athletic Club for 30 years. But as Ginny said, “There are so many considerations involved in going somewhere when you have a loved one with dementia.” Bill can no longer drive himself to the club — the risk of dementia-linked disorientation while driving is too great. And dementia isn’t predictable. Will he become confused while there? Overwhelmed? Some living with the disease become agitated or embarrassed. Such worries can lead to social isolation: It simply becomes easier to stay at home.
Last year, staff members at Harbor went through an hour-long training to learn how to recognize signs and symptoms of dementia and respond safely and respectfully. Now if Bill does become confused suddenly, the staff is prepared and knows how to distract and redirect him until Ginny comes to get him.
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.
In the United States, the movement to create dementia-friendly communities gained traction in 2015 with the launch of Dementia Friendly America at the White House Conference on Aging. Modeled after a successful program in Minnesota, the newly minted initiative announced pilot programs in six cities and communities, among them, Denver.
JJ Jordan, the community chair for Dementia Friendly Denver, said the program began by polling the community on what their needs were. Caregiver support was a top concern. Other concerns included reducing stigma and making resources more accessible to caregivers, and those with dementia. Caregivers carry cards to alert people that their companion has dementia, and some Denver restaurants offer “purple” tables that are set up in quiet corners with clutter removed from the surrounding area.
While there are some basic commonalities in the movement, the initiatives are playing out differently in every community. In Montgomery, Alabama, 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, Maryland, 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 USA, a Dementia Friendly America initiative, almost 40,000 volunteer “friends” have gone through a similar training to become more responsive in their daily lives to people with dementia. The movement, originated by the U.K.’s Alzheimer’s Society, has grown to encompass millions of volunteers worldwide.
Funding for the community initiatives varies, with a mix of public and private funds underwriting the cost 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.
Still, it’s difficult to gauge the effect 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 effect is based is raising consciousness: “Just adding a little more thoughtfulness among the public.” Today, there are about 250 dementia friendly communities in 48 states, according to Dementia Friendly America.
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.
Johnson, in Denver, says that dementia is often hardest on caregivers, who frequently die before their loved ones with the disease. They remind caregivers that while a loved one living with dementia should stay home “as long as it makes sense,” caregivers also have to take care of themselves. Self-care is “not a selfish thing.”
Through community education programs and trainings, networks like Dementia Friendly Denver make sure that individual communities throughout the city have support and information.
“We are the troubadours about the topic of dementia,” Johnson says. “Educating the residents of our city, so they can better interact with people with dementia.”
This piece was produced by MemoryWell News for the Ages on which an earlier version of this story appeared.