Beyond Dementia Inclusion
We realized these folks had no access to the beautiful, big community we were working so hard to build. We realized what we were doing was a form of segregation and they should have the same access as everyone else.
“Everyone who is living with dementia is having a different experience with it,” Schmidt continued. Ultimately, the term “Sherbrooke-inclusive” was implemented to best define their community.
Educating Staff, Residents and Families
The first step involved education. “We started with our general population of residents, their families and the staff. We talked about the ‘why’ of what we wanted to do,” explained Schmidt. “Then we met with the families of people who lived in the dementia neighborhoods and learned they really wanted their people to have access to the things everyone else did.”
Safety was a significant component. Sherbrooke moved away from locking neighborhoods but secured the larger perimeter so all residents could be in the community safely. “This was really important to give families and staff peace of mind,” Schmidt said. Exterior doors to the campus are locked and a door alert system in place.
The Dignity of Risk
Sherbrooke Community Centre, a registered Eden Alternative® Care Home, follows the Eden Alternative Domains of Well-Being®, which includes the seven fundamental aspects of personhood: joy, identity, growth, autonomy, security, connectedness and meaning.
According to Schmidt, to create that well-being, focusing on each person’s needs is essential. She shared a story about a past resident with some cognitive impairment who would daily take the bus downtown. After one excursion, he came back with frostbite because he had forgotten his gloves.
“The decision was made to move him to a locked area [and restrict his ability to leave the community], but his well-being deteriorated and he stopped eating,” said Schmidt. One of Sherbrooke’s managers recognized there needed to be provisions made to get him back out again, so that’s what they did – a form of GPS was used, they made sure he always had a bus pass and warm clothes.
“He lived for several more years. He was given the chance to keep doing what he loved to do,” Schmidt said.
Making decisions based on well-being involves risk-taking. According to Kirsten Jacobs, Vice President for Shared Learning Initiatives at LeadingAge, risk isn’t negative.
“When we reflect on our own lives, we see that we accept risk every day—and with that risk comes much of what we cherish most: joy, adventure, love, growth, and connection. Remove risk from life, and we lose much of what makes it meaningful,” said Jacobs. “Yet when someone is living with cognitive change, our first instinct is often to lovingly prioritize safety—or perceived safety—over individual autonomy. In many cases, that decision is made for the individual rather than by the individual.”
At Sherbrooke, administrators took another risk when it came to creating an inclusive community.
“In a neighborhood where everyone who lived there had dementia, there were no social cues of normalcy. It’s confusing to be living with dementia, but also confusing to be living with other people who have it. We wanted to diversify within the neighborhoods—to bring people in who didn’t have dementia,” Schmidt said.
Initially, this was challenging. “To get that first person to move into a neighborhood was hard,” she admitted. “Alice was one of the first —she found purpose in helping out, and when she had the opportunity to leave that neighborhood, she didn’t want to go. Another woman moved in, she and Alice became friends, and slowly, the neighborhood built to a mix of people.”
Supporting Well-Being
Inclusivity hinges on the empathetic actions of both staff and residents. “We have to go with people where they are—not bringing them into our world but going into theirs,” said Schmidt.
She quoted geriatrician and educator Dr. Allen Power, an Eden Alternative educator, who says, “We need to change our minds about people whose minds have changed.”
Power, a researcher at Schlegel-UW Research Institute for Aging and the Schlegel Chair in Aging and Dementia Innovation, also partners with Schlegel Villages, which currently has 19+ locations throughout southern Ontario, on their person-centered dementia care.
At Schlegel Villages, residents of “Emma’s neighbourhood,” the memory care section, have access not only to their neighborhood but access to the Village, connecting to Main Street and the Town Square (modeled on a small town).
Of people living with dementia,“our first and foremost goal is to support people’s well-being… these qualities that all of us need to live well regardless of our age,” Power says in a video on the Schlegel Villages website.
For Schmidt, a photo on her desk of a 100 year-old woman named Grace also reminds her of how essential it is to have the opportunity to live well. Grace is smiling and holding some produce from her garden.
“Grace had a garden box and grew vegetables for the first time in her life—the look of joy on her face is what’s meaningful to me,” said Schmidt.
LeadingAge has produced a virtual series on dementia inclusion, featuring Kirsten Jacobs, Dr. Allen Power and other experts, to “explore the practical implications of the shift toward intentional inclusion and begin to spark person-directed approaches aimed at moving toward more integrated settings that enable people with dementia to move freely throughout the residential community where they live and fully participate in community life.” Learn more here.
