SPRINGFIELD — As more and more individuals are being diagnosed with dementia, the Springfield Dementia Friendly Coalition is working to bring awareness and education around its various forms, while also breaking the stigma.

First established in 2018, the Springfield Dementia Friendly Coalition was one of the three designations for the city of Springfield in 2019. “In 2019, the city of Springfield was designated an age friendly city, a dementia friendly city and a health system which went to Baystate,” said Zee Johnson of the Springfield Dementia Friendly Coalition. “We were one of those three legs with that designation.”

Johnson shared, “Our goal is really to educate and make the Springfield city residents aware of resources, aware of dementia, to advocate on behalf of residents in Springfield when we can and really to offer assistance around the disease of dementia which includes Alzheimer’s, vascular dementia and those sorts of things.”

Since 2019, there have been many changes out of the coalition’s control, such as the coronavirus pandemic in 2020. The coalition was dormant for that year, before resurfacing in 2021.

“We saw such a need for folks to be educated, to be aware, to kind of understand the world of dementia,” Johnson said.

She shared that one of their purposes is outreach. “We don’t just talk by telephone, we go out to community events, we go out to outreach centers, we go to neighborhoods to just provide education and information about dementia,” she said.

Johnson explained that the coalition is known for two signature programs. The first is called “Memory Sunday,” an annual program that takes place on the second Sunday in June, where the African American churches are asked to be responsible for educating their participants and members about dementia. Johnson said the coalition will provide information to the members by talking, sharing resources and being present in the congregation, before turning it over to the churches to reinforce the importance of understanding the signs of Alzheimer’s and dementia.

In 2023, about 10 churches participated, which was an increase from the eight churches in 2022.

“We see that there is a need for many churches to get on board and they see this as a good vehicle for educating their members,” Johnson said.

She noted that a lot of the churches have older members who attend, which makes for a “great way” to get the message out.

This year’s event will take place on June 9. Johnson said they are expecting more participation from Black churches.

“One of the reasons we are excited about this particular program is it helps reduce the stigma,” she shared. “A lot of times we are care for folks that have dementia or have memory loss and we can feel ashamed [and] we don’t want anyone to know that we have a loved one who has dementia, but this is a way to say you’re not alone, there are resources for you, there are others who are experiencing the same type of care or who are taking care of others.”

The second program is called “A Sense of Dignity: My Journey Through the World of Dementia,” and is designed for caregivers. The annual program — which also takes place in June — shows appreciation and pays tribute to caregivers.

“We give them the opportunity to tell their stories — to tell about the rewards, the successes and even some of the challenges and how they manage the situation and just some day-to-day life stories,” Johnson said.

She shared that this program is “powerful” because the caregivers are everyday people — Springfield residents — that others know. She said it also helps, again, remove the stigma and brings more of an empowerment to say, “I can make it forward too.”

Looking ahead, Johnson said they plan to continue offering these programs because they recognize the importance and significance it has in terms of outcome.

A new program that will also be offered this year is called “Brain Health.” This is a program that the coalition hopes to sponsor annually. It is not only designed to bring awareness to dementia but to also get more people on board, Johnson shared.

During the program, there will be videos, education sessions on how to reduce the risk of Alzheimer’s, the benefits of detection and screening, and care and support. She added that the overall purpose is really focusing on community outreach.

“Unfortunately, the number of folks who are diagnosed with dementia is rising and it’s [going to] continue to rise. So, we feel that this is a proactive program and conference in letting people know that dementia is really a public health concern as well,” Johnson said.

She noted that she does not want people to be afraid. “Fear is a powerful weapon that can either spur you ahead or it can make you submissive and we don’t want the submissive piece. We want you to feel comfortable and able to manage a quality of life whether it’s for you or someone you’re caring for.”

In December 2023, the coalition received a citation from the Springfield City Council for their resurfacing and efforts. Johnson said they were “honored” to have been recognized, and behind that recognition was the fact that the coalition has received a number of grants to assist with their efforts.
Johnson noted that the coalition is made up of a group of volunteers, all who have careers outside of the coalition, in various capacities. For example, Johnson is a social worker at Baystate Medical Center, working with the Geriatrics Department. Other coalition members work as public health specialists, day program owners, a nurse and two representatives from the Alzheimer’s Association to name a few. All members have experience or have had exposure to someone with dementia.

“The beauty is we’re bringing a lot of diverse talent to the coalition, so we are knowledge strong in terms of understanding the disease,” Johnson said.

The coalition has strong partnerships with Baystate Health, Greater Springfield Senior Services, Public Health Institute, Faith Health Alliance which is a group of churches and the Massachusetts Advisory Council on Alzheimer’s Disease and All Other Dementias. Johnson said this makes for a “supportive environment” to do the work.

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