At 88, Shirley Strysick shows no signs of physical decline, but her memory isn’t as crisp as it once was, and she’s very aware of the change. That’s why she no longer cooks.
“I could burn this joint down,” she said last week as she gave a tour of her apartment at an assisted living complex in Watertown. “I forget things.”
Strysick, a retired nurse, began noticing memory problems about five years ago and has been diagnosed with early-stage dementia. On a hook above her kitchen counter hangs a notebook where visitors log in, a step family members took a few months ago because Strysick sometimes couldn’t recall who had dropped by.
Strysick may be among the more fortunate of those with memory loss because of where she lives. Watertown, a city of about 24,000 people 45 minutes east of Madison, has embarked on an effort to become a dementia-friendly community, perhaps the first in the country.
“This is massive, absolutely massive,” said Lori La Bey, executive director of Alzheimer’s Speaks, an advocacy group in St. Paul, Minn. “Watertown, to our knowledge, is going to be the first dementia-friendly community in the U.S.”
The designation doesn’t have a precise definition, La Bey said, but typically refers to a community that takes deliberate, coordinated and ongoing action to enable people with memory loss to feel safe in a community. That means everything from easy access to local facilities such as banks and shops to ensuring that social networks can be maintained. The concept has taken off in the United Kingdom but is just beginning here, she said.
Jan Zimmerman initiated the effort in Watertown and envisions a community where residents are fully educated about dementia, business owners are trained on how to assist customers with memory loss, and people with dementia remain independent for as long as possible.
Zimmerman is a nurse and administrator of Heritage Homes, a residential community in Watertown operated by the Lutheran Home Association. It includes assisted living apartments and a memory care wing. Zimmerman has worked closely with dementia patients for decades and became frustrated that those with memory loss often become isolated from the community, she said.
Tuesday, about 40 community members attended a meeting to hear about the initiative — a first step Zimmerman hopes will lead to a formal coalition that meets regularly and puts forth detailed proposals. The first coalition meeting is Nov. 14.
Already, Zimmerman and others have moved forward on several fronts. At the meeting, attendees could pick up pocket-sized cards intended to be carried by people with memory loss and presented at retail establishments. The cards read: “Thank you for your patience. I am memory impaired and may require a few extra moments. Your cooperation and understanding is much appreciated.”
The cards are a subtle way people can signal their situation without having to announce it publicly, Zimmerman said. Also, businesses are being offered free, on-site training for their employees, and those that complete training can display a purple angel in their window.
On Wednesday, the first monthly “Memory Cafe” was held at Connection Cafe, a coffee shop near Heritage Homes. The concept, now prevalent in many communities, provides a laid-back social setting where people with memory loss and their caregivers can share tips and support each other. Twenty people attended the first one.
“I’m absolutely proud of our town and what we’re doing,” said Mayor John David, who attended Tuesday’s event and is encouraging community members to get involved. Both his mother and mother-in-law died of Alzheimer’s, he said.
As the large Baby Boomer generation ages, experts say memory loss will become an increasingly familiar part of society. Already today, one in nine Americans over age 65 has Alzheimer’s, the most common form of dementia. By age 85, one in three people has it, according to the Alzheimer’s Association.
“The statistics are not on any of our sides,” said La Bey, who spoke at Tuesday’s meeting. Dementia differs from normal forgetfulness in that it interferes with daily life, she told the crowd, giving examples.
“Have you ever walked into a room in your house and not known where you are?” asked La Bey, who said her mother has had dementia for more than 30 years and is in the final stages of Alzheimer’s. “Have you ever looked into a loved one’s eyes and not known who they are?”
In an interview, La Bey said restaurants, in particular, can be overwhelming to someone with memory loss due to the sheer number of decisions a diner must make quickly. A trained waiter can break down the options into manageable chunks, she said. For instance, instead of reeling off a long list of beverages, a waiter can first ask whether the diner wants a hot or cold beverage, then gradually get more specific, such as coffee or tea, she said.
Strysick, whose assisted living apartment is at Heritage Homes, no longer drives or leaves the premises alone. Even with a family member, she has become increasingly reluctant to go out because of a fear of becoming disoriented, said her daughter-in-law, Carol Strysick.
The two had coffee Tuesday at Connection Cafe. The owners, Mike and Tami Cederberg, are among Watertown business owners who have embraced the concept of a dementia-friendly community. In addition to serving a regular clientele from Heritage Homes, they have a family member with a dementia-related disorder, so they’ve been educating themselves, Tami Cederberg said.
As Shirley Strysick ordered, Cederberg maintained eye contact with her, a tactic advocates say helps reduce anxiety. Cederberg kept questions simple and showed Strysick both a small coffee cup and a large one so that she could point to the one she wanted.
Strysick did not yet have one of the pocket-sized cards but said she would not be opposed to carrying one.
“It’s OK if everyone knows I need help,” she said.