When Kathy Armitage’s 75-year-old husband, Robert, was diagnosed with Alzheimer’s disease about three years ago, the former nurse was more prepared than most to handle his impairment.
But because the incurable disease is cognitive – destroying a person’s thinking skills and memory – it can be less obvious to others, sparking impatience and frustration and leading to people with dementia being ostracized from their communities. So Armitage started handing out “compassion cards” alerting waitresses, bank tellers and store clerks to her husband’s dementia.
“My companion lives with a form of dementia. Please show us patience today,” the small, discreet cards read. Armitage says they work: People are more understanding and less dismissive of her husband when he becomes confused.
“I’ve had a very, very good response from people that I have given them to,” says Armitage, who lives in Marine on St. Croix, Minnesota. “You can tell the difference. … They kind of explain things much easier for him.”
The cards came from Act on Alzheimer’s, a statewide collaborative aiming to make communities more accessible to people with dementia and their caregivers. Through Act on Alzheimer’s and the nonprofit FamilyMeans, volunteers around the state train businesses how to interact with people with dementia and host support groups for caregivers. They offer help through smaller measures as well, such as handing out compassion cards.
These initiatives have made it easier for families such as the Armitages to continue their daily lives with as little interruption as possible.
Dementia, however, is still highly disruptive, with most of those afflicted living with it for years or decades, and many slipping to the fringes of society. When someone with dementia dies, there’s an estimated 2 in 3 chance he or she was living in a nursing home at the time, according to the Alzheimer’s Association.
Advocacy groups say cities and states should be doing more to allow people with dementia to stay in their homes as long as possible. And with Act on Alzheimer’s – which launched in 2011 following the recommendations of a state-appointed working group on Alzheimer’s preparedness – Minnesota is leading the way in developing dementia- and Alzheimer’s-friendly communities, with a model of the state’s initiative adopted in 27 other states, including Hawaii, Massachusetts and Nebraska.
The push to equip communities with the tools to accommodate residents with dementia is one facet of a growing movement to meet the needs of the country’s growing older population. The share of the U.S. population that’s 65 or older was 15.2 percent in 2016, up from 13 percent in 2010, according to U.S. Census data. Average life expectancy also has increased over the past decade, and those who make it to 65 can expect to live around 20 more years.
As Americans live longer, their risk of developing some form of dementia increases substantially. And with an increased prevalence of dementia comes higher costs for states and individuals. For example, average annual Medicare spending for an older person with Alzheimer’s is $23,497, more than three times the average spending for a senior without the disease.
In Minnesota, about 92,000 older adults have Alzheimer’s – the most common form of dementia – and that number is expected to grow to 120,000 by 2025, according to projections from the Alzheimer’s Association. Across the U.S., 1 in 10 people who are 65 or older – about 5.3 million people – have the incurable disease, and more than 15 million others care for them.
“People are passionate about this issue because they’ve lived it or have been close to it,” says Dawn Simonson, executive director of the Metropolitan Area Agency on Aging, a regional aging services center that receives state and federal funding and serves the seven-county Minneapolis-St. Paul metro area. “It’s something that really unites people, and it unites people across the generations.”
State and local investment in social services such as housing, income and nutrition assistance have been linked to better health outcomes and lower medical costs, according to a recent study published in the journal Health Affairs. The study also suggests community partnerships that address both medical and social determinants of health can make it easier for people to age in their homes and communities.
But while age-friendly and dementia-friendly initiatives both aim to help older adults remain independent and in the community, focusing on dementia requires stakeholders to explicitly address the needs of people with dementia and those of their caretakers. That type of support can involve anything from so-called memory cafes to hands-on instruction for government workers and businesses.
In some Minnesota communities, law enforcement authorities are trained how to communicate with a confused or distressed older person who may have dementia. More general age-friendly strategies might place a greater focus on aiding those with physical disabilities such as vision or hearing impairments.
“If we bring something aging-supportive and focus on dementia, we raise this awareness and understanding of how someone [with dementia] experiences the world, the confusion that goes with that,” Simonson says.
Making communities more accessible for people with cognitive disabilities also helps the community at large, says Olivia Mastry, who has been at the forefront of the dementia-friendly movement in Minnesota and nationally. As the Act on Alzheimer’s initiative gained traction in Minnesota, Mastry’s organization, the Collective Action Lab, helped form the nationwide Dementia Friendly America network in 2015 to replicate its success in communities across the country.
Mastry likens dementia-focused changes made to public spaces – such as better signage, clearer entry and exit points, and the creation of places to stop and rest – to adjustments designed to help people with physical disabilities, such as curb cuts, automatic doors and ramps.
“We’re seeing new services and supports popping up in communities,” Mastry says. “So it really is beginning to change the face of communities in terms of normalizing and destigmatizing the fact that people may have cognitive impairments, and then offering responsive and supportive services so they can be as independent as possible for as long as possible.”
The efforts continue: Last year, $750,000 in grant funding appropriated by the Minnesota Legislature was awarded to 10 organizations – four in the Twin Cities metro area – for Alzheimer’s and dementia awareness and support programs. The funds are being used to conduct memory screenings, pilot electronic medical record tools and host support groups and meetings, among other initiatives.
Coordination among health care institutions, local governments and community members such as businesses and faith-based groups is key for these types of initiatives to be successful, Simonson says. Overall in Minnesota, more than 40 communities have committed to becoming dementia-friendly, and more than 1,500 physicians and health care coordinators have been trained on how to communicate with people with dementia, according to Act on Alzheimer’s.
“Many sectors of our community, as well as system players – health systems, health plans, social services – came together in ways that we had never worked together before,” Simonson says. “It not only brought this opportunity for… long-term systemic change on the ground, but it brought a whole new working relationship with systems at the local level. That’s been really critical.”
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