When Ron Grant was diagnosed with Alzheimer’s, he and his wife, Vicky, immediately shared the news with their church. “They are a wonderful group of people,” Grant says. “But for quite some time after that, we would come to church and someone would come up to Vicky, with me standing right next to her, and ask, “How is Ron doing?”
Even eight years later, thanks to a slow progression of symptoms, “I’m still quite capable of speaking for myself,” says Grant, 61, a retired prison chaplain from Oklahoma City. “But people often don’t know how they are supposed to respond to me, how they are supposed to act with me.”
That’s a common problem as an aging population swells the ranks of those with Alzheimer’s and other forms of dementia — disorders that impair memory and reasoning. While people with dementia may eventually end up home-bound or in care facilities, most first spend years living in their communities, going to places of worship, stores, banks and restaurants and encountering law enforcement and medical workers.
Better preparing everyone from waiters to police officers to support them and their caregivers is the goal of a growing movement for “dementia-friendly communities.” Grant is a spokesman for the largest effort, a coalition called Dementia Friendly America (DFA).
The movement is focused not just on increasing sensitivity and reducing stigma but on “helping people stay in their homes and their communities as long as possible,” Grant says.
DFA, which grew out of a 35-community Minnesota program called ACT on Alzheimer’s, offers training to communities nationwide. In 2015, eight communities, including Boston, Denver and the state of Minnesota, launched dementia-friendly plans; in 2016, 80 additional communities have expressed interest, says coalition founder Olivia Mastry.
The national group provides tool kits, webinars and other resources, but each community decides what it needs to do to better support people with dementia and their caregivers, Mastry says. That can include formal programs, such as support groups and respite care, as well as educational efforts aimed at groups such as:
• Police officers. An officer might learn how to get someone safely home when a suspected drunken driver turns out to be someone with dementia instead.
• Clergy. They might consider quiet rooms for adults, for those times when crowded services become overwhelming for some congregants.
• Store clerks. They might learn how to help someone who struggles to make change or forgets to pay.
• Restaurant servers. They might learn how to simplify menu choices: “We have soup and sandwiches — which sounds good to you?”
Businesses and government agencies also can learn how to make their offices and stores safer and more inviting for people with dementia — for example, by turning down loudspeakers and decluttering aisles, says Emily Farah-Miller, ACT on Alzheimer’s project director.
“I think anyone in any type of service industry can benefit from this kind of education,” says Craig Gilmour, a financial adviser at Coastal States Wealth Management of Raymond James in Bluffton, S.C. He and his colleagues recently received training from Memory Matters, a Hilton Head non-profit agency that adapted a program from the United Kingdom called The Purple Angel Project. Participating establishments display purple angel window stickers to let the public know they are dementia-friendly.
The fact that so many of those stickers are going up in the Hilton Head area is a great comfort to Ron Gustafson, 68, whose wife Cathy, 67, has Alzheimer’s. Gustafson says he and his wife live in a gated community where the security staff and other employees have taken dementia-awareness training. But they have suffered from the ignorance and insensitivity of people who did not understand their situation — such as one waiter who let his impatience show when Cathy could not decide what to order. Ron recalls that he handed the waiter a card that explained she had Alzheimer’s — “and he looked at it and said, ‘What am I supposed to do with this?’ ”
When more people know what to do when someone in public is having a hard time — whether that person has dementia or not — everyone benefits, Mastry says. “These really become ‘having-a-bad-day-friendly’ communities.”
Some tips for communicating with someone with dementia, from ACT on Alzheimer’s:
• Speak clearly and be patient. Allow the person time to understand. Use short, simple sentences. Don’t raise your voice.
• Listen closely. Give encouragement as you look for clues to what the person is trying to say.
• Smile warmly and make eye contact. Someone who does not understand your words may quickly interpret the look on your face, tone of voice and body language.
• Respond to a look of distress. If someone looks lost and distressed, offer to help. Ask if his or her address might be on something in a pocket or bag.