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Shining a Light on Dementia Friendly Washington Heights

by Hana Ahmed

In the summer of 2022, Washington Heights, a neighborhood on the southside of Chicago, was designated a dementia friendly community by Dementia Friendly America. This certification means that the national organization recognizes Washington Heights as a community that is both safe and engaging for persons living with dementia and their families. The task force to achieve this certification was led by Darby Morhardt, PhD, LCSW, research professor and social worker at the Mesulam Center and Karen Graham, MA, manager of community relations at the Rush Alzheimer’s Disease Center (RADC). They both served as leaders for the initiative until February 2023, when leadership was handed off to Phyllis Tyler and Harriet Thomas, two community leaders of Washington Heights.

The community’s path to becoming dementia friendly began when Morhardt and community partner and executive director of the Endeleo Institute, Melvin Thompson received a SEED Grant from the Alliance for Research in Chicagoland Communities to uplift the Carter G. Woodson Chicago Regional Public Library to provide dementia friendly programming, igniting the effort by the entire community.

Dementia-friendly communities are incredibly timely. The Population Reference Bureau of the U.S.  suggests rates of dementia will increase from more than seven million people ages 65 or older in 2020 to more than nine million Americans who could have dementia by 2030 with nearly 12 million by 2040. Communities like these are necessary because they allow patients to remain connected to their homes and their neighbors while offering support for these patients’ caregivers. For example, Washington Heights has a quarterly arts program for persons living with dementia, a monthly caregiver support group, an annual caregiver town hall, multiple informational resources available at the library, and librarians who are trained to navigate the needs of a person living with dementia.

As Tyler explains it, “Dementia Friendly America provides people with the framework to build a dementia-friendly network, but the Washington Heights team has truly excelled in making adaptations that benefit their community specifically.”

This certification, in a neighborhood that is over 95% African American, is a step towards ameliorating the overwhelming health disparities that characterize Chicago. “Dementia is an ailment that impacts African Americans in a 2:1 ratio,” writes Thompson, in his letter of support for the initiative. His message as someone who is a caregiver for his mother living with dementia resonates with the community since caregivers alongside their ill person can also feel helpless and isolated. A steady social network is a form of capital that can help contribute to positive health outcomes.

By building what Tyler calls a “safe space” within the community, everyone contributes to allowing those impacted by dementia to feel understood and accepted. This has numerous positive benefits for the person’s health: it allows them to remain active since the main hubs are often within close geographical distance and preserves their ability and desire to socialize, which often has positive effects on one’s cognitive abilities. In addition, Tyler mentions the importance of having Black participants represented in clinical research, though many Black Americans have reason to distrust the scientific and healthcare community. In a community led effort like this one, bonds between healthcare providers and Black patients can be improved as persons living with dementia and their caregivers are empowered by the dementia friendly community.

Tyler, who grew up in Washington Heights, finds that the camaraderie between neighbors is one of the most memorable characteristics of her community. She remembers how the entire community, including her parents for whom she later became a caregiver, came together to build a little league field when she was a child. In recounting the memory with such fondness, Tyler noted the large proportion of aging Washington Heights residents including her old elementary school teachers, friends, and community leaders, making this initiative even more necessary. With the tangible support of neighborhood businesses, interested parties, and residents, it is clear that a deeply rooted love for one another has helped Washington Heights in finding their success.

Morhardt and Graham found it especially pressing that they turn the leadership reigns over to key community stakeholders: Phyllis Tyler and Harriet Thomas. Perfectly in line with the Dementia Friendly America guideline of dynamic communities that continuously strive to improve, Tyler has an incredible vision for the future of dementia-friendly Washington Heights. She hopes to involve the Chicago Transit Authority in adapting transportation routes and facilities to accommodate persons living with dementia. There is also an ongoing effort to “have caregivers be more involved during medical care.” She’d like to have more internet cafes as well where caregivers and individuals of the “pen-and-paper" generation can learn to use technology, like iPads, to connect with one another.

“In Washington Heights, our goal is to open up the community,” says Tyler.

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