HYDE PARK — Residents and leaders worked throughout 2020 to establish Hyde Park as Chicago’s first dementia-friendly neighborhood, and this year they’ll ramp up the effort to make the community more inclusive for people with memory loss.
Residents organized neighbors and institutions to begin making Hyde Park more accessible to people with dementia, which culminated in a neighborhood designation from Dementia Friendly America last fall.
Organizers secured support from Alds. Sophia King (4th) and Leslie Hairston (5th), state legislators Sen. Robert Peters (D-13th) and Rep. Curtis Tarver II (D-25th) and Cook County Board President Toni Preckwinkle toward the designation.
Members of Chicago Hyde Park Village, the University of Chicago’s Memory Center and the SHARE Network — which led the charge to secure the dementia-friendly designation — joined the Hyde Park-Kenwood Community Conference for a virtual panel discussion Thursday.
Isolation is “no friend to us who have dementia,” so community connections and activities are crucial, said Tom Doyle, former educator and Alzheimer’s Association board member.
Doyle has Lewy body dementia and Parkinson’s, and he retired in 2015 after his diagnosis. His loss of cognition forced him to leave his “dream job” as a university professor and administrator, robbing him of his “sense of meaning, purpose and joy,” he said.
But upon moving to suburban Elgin to be closer to family — he wanted to move with his husband to Hyde Park, he said, but loved ones intervened — Doyle rediscovered his purpose through activism.
“I serve as a spokesperson for people who need to hear about what it’s like to live with this disease,” Doyle said. “I celebrate you who have a passion for helping all people living with dementia to have healthy and fulfilling lives. … I have Lewy body dementia, but Lewy body dementia does not have me.”
The Hyde Park effort can improve the quality of life in the neighborhood for residents with dementia and their caregivers while potentially reducing the risk of the disease for other neighbors, UChicago neuroscientist Wade Self said.
Depression, social isolation and air pollution are contributing factors to dementia, all of which residents can take proactive steps to address through community action, Self said.
“A dementia-friendly Hyde Park could greatly impact not only the people that are living with dementia right now in the community, but maybe those in the future,” Self said. “… We can create a more equitable space for people living with dementia and their families and caregivers.”
Self’s grandfather was diagnosed with Alzheimer’s disease in 2009 and died in 2019. Dementia affects a patient’s “entire support group,” he said, citing the toll that serving as a primary caregiver for a decade took on his grandmother, who died a year after her husband.
Kelly Stepto-Royston, a lifelong Hyde Parker and caregiver of her mother, who has dementia, shared her “commandments” for managing the stress the disease creates at Thursday’s meeting.
Patients and caregivers must remember dementia is a disease and not a reflection of the person living with it, to extend grace to oneself when stressed and to prioritize one’s mind, body and soul throughout the battle, Stepto-Royston said.
Tessa Garcia McEwen, a social worker at UChicago’s Memory Center who introduced the Hyde Park Village to the Dementia Friendly America initiative, encouraged Hyde Park to take a “heart-centered” approach to helping neighbors with dementia.
Emotions like love, happiness and embarrassment are retained through the disease, so neighbors should be aware of what dementia looks like and provide them with compassion and patience, McEwen said.
“Let’s help our neighbors have an enhanced quality of life,” McEwen said. “We want to help them build in this rest, support and recreation.”
Opportunities to support neighbors with dementia abound, panelists said. The Hyde Park Village coordinates visits between volunteers and older residents through its Village Visitor program, special projects coordinator Dorothy Pytel said.
To volunteer with the Dementia Friendly Hyde Park initiative, email Pytel at firstname.lastname@example.org.
Dementia Friendly America offers a toolkit for residents interested in pursuing a dementia-friendly designation for their neighborhood. The process takes about six months to a year, from convening a working group to acting on a plan to make the neighborhood more accessible.
Another national effort, Dementia Friends USA, offers brief, online trainings for people on awareness and actions to improve patients’ quality of life.
The community-wide effort can help Hyde Parkers with dementia feel more secure in their surroundings and grant them dignity in their everyday interactions, Doyle said.
The neighborhood has the chance to set a precedent for Chicago neighborhoods looking to support their residents with memory loss, he said.
“You’re the vanguards,” Doyle said. “You are setting the stage for what it means to be a dementia-friendly community.”
Learn more about the initiative here.
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