Designed mainly for African American churches, Alter also helps meet the needs of caregivers, family members and friends
by Mike Ferguson | Presbyterian News Service
LOUISVILLE — Like its name implies, the Alter program was established for predominantly Black churches to help them better minister to their members and friends living with dementia — and for their caregivers, family members and friends as well.
Dr. Fayron Epps, a nurse and an assistant professor at Emory University in the Nell Hodgson Woodruff School of Nursing, presented an hour-long webinar Monday for the Presbyterian Older Adult Ministries Network discussing Alter, where she is the program lead, and offering ways that churches across the denomination can better minister to the people the program serves.
Epps and the Alter program’s interdisciplinary team partner with 25 African American faith communities to provide them with tools and resources needed to support families facing dementia. Learn more about Alter by watching this brief video.
“We are trying to be a change agent and make history in the Black church with this program,” Epps said of the program that’s led by women. “I am a woman of faith, and I’m practicing the faith embedded in me from the time I was little.”
Nearly six million people in the United States are living with Alzheimer’s disease or related dementia. African Americans are twice as likely to be affected by dementia than white people, according to Epps, adding that by 2030, 40% of the people living with dementia will be Black or Latino-a. “I want to be able to change those statistics,” Epps said. “That’s what’s fueling me.”
Three years ago, Epps and her colleagues began speaking to churches. Crowds ranged from 2-70. One Saturday following their talk, a bishop came to Epps and told her, “This is a good education, but what do I do now?”
“I was speechless,” Epps said. “We decided we needed to put together something beyond education.”
With grant funding, the Alter program was born to “encourage culture change and strengthen support in African American churches,” Epps said, adding, “our churches are more than just a place of worship.”
Families would explain to Epps and others they’d stopped going to church once they’d become a caregiver for someone living with dementia. “They felt the church wasn’t there for them,” she said, adding that the resulting loneliness “can lead to depression and other negative health outcomes.”
“We have so many committed [church] members over age 65,” Epps said. “Dementia does not discriminate for age, sex or color, but the older you get, the more at risk you are.”
The team found many churches “weren’t prepared or equipped when families with dementia came to them,” Epps said. “Our goal is to preserve access to churches with families facing dementia. We want them to feel welcome and come back — or stay if they are still part of their church family and feel supported.”
These days, in addition to its education outreach, Alter trains church leaders, including pastors. “We get down and dirty, digging into dementia and how it can impact the congregation, and going over what they can do to support their members,” Epps said. One component during training is role-playing “so people can understand what it’s like for a caregiver to prepare someone to come to church.”
One eye-opener for many church leaders is that no two people experience dementia the same way.
“You can’t say that Deacon Joe was like this, so Usher Betty is going to be like this too,” Epps said. “Everybody living with dementia is different.”
“It’s not a hush-hush thing,” she said of dementia. “People can be supported on this journey. If you are a faith leader and you like what you’ve heard, please reach out to us.”
Alter can help churches establish a memory café, a resource library or a respite program for caregivers. They also help worship leaders to adapt the service so that families living with dementia can still be part of worship. One statistic: when worshiping online, a 10-minute service is considered dementia-friendly.
The program lists the qualities of what it considers “an Alter champion.” Those include people who:
- Accept and value people regardless of their cognitive abilities.
- Ensure that people living with dementia and their care partners are supported through their journey.
- Make sure that people living with dementia and their care partners are spiritually and pastorally supported and nurtured.
- Know what people living with dementia have to offer so that they can participate in their faith community. “My grandmother cleaned the church every weekend. That meant something to her,” Epps recalled. “We want to make sure these families can still engage in their faith community.”
Asked near the end of the webinar whether the principles and programs employed by Alter are applicable for churches that aren’t predominantly African American, Epps said, “It’s something we talk about all the time. The education we provide is culturally tailored, and the examples we give are more culturally tailored to the Black church. But we work with all faith communities. Pieces of our framework can be applied to other faith communities, too.”
“We understand that each church has their own agenda, their own priorities they are working on,” Epps said. “One thing is to be persistent and make sure we are having honest conversations. If a church doesn’t see it as a priority this moment, we will come back,” she said, smiling.
After three years of persistence, one pastor finally asked Alter to help train the congregation after the pastor’s mother came to live with him.
“It was time,” Epps said.
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