A nurse’s mission
Empowering African American faith communities with dementia outreach
By Kristen Zapata
“African Americans are twice as likely to develop dementia than non- Hispanic white Americans — that’s a higher risk than any other racial group,” said Fayron Epps, PhD, RN, FGSA, FAAN, a community-engaged research nurse and professor at The University of Texas Health Science Center at San Antonio School of Nursing. “The Black community doesn’t even realize the extent of how dementia disproportionately affects them. They often adopt a common belief that short-term memory loss, slight confusion and a little agitation is a normal part of aging, not a sign of a more serious condition.”
Epps, who joined the university in January 2024 as the inaugural Karen and Ronald Herrmann Distinguished Chair in Caregiver Research, said she largely works within the African American community because it is the most-affected population for dementia, yet it is often underrepresented in related research.
In response, Epps has rooted herself within national and grassroots organizations, government agencies and faith communities to create tangible resources where people are searching for them. For many, this includes places of worship. And in the face of adversity, African American churches have historically served communities as places of hope, prayer and solidarity as well as a social hub for reliable guidance and information.
“Faith communities are an integral part of the health care team,” said Epps. “Even if we don’t attend every Sunday, we lean on the church for resources and answers. Right now, many churches don’t have the answers and are unaware of what dementia is. We are leading a movement and equipping places of worship with the resources needed to better support their parishioners facing dementia.”
Together, best friends Tasha Wilson and Shanna Magee navigated the challenges of caring for their mothers, who both faced a dementia diagnosis.
Reaching the most affected
Based on feedback Epps received firsthand from caregivers and people living with dementia, she founded Alter, a program to train faith leaders and caregivers about the condition and provide ongoing support through a network of certified “dementia-friendly and inclusive faith” partners. The program offers stipends to Alter partners for the sustainability of dementia-support services. Services include guest speaker events, memory and hearing screenings, health education materials, audio and visual media, research-awareness kits and community information.
“I always say that you can’t beat a best practice,” said the Rev. Jeff Carr, leader of an Alter partner church in Nashville, Tennessee. For the past two years, Carr and what he calls his mini-Alter team have been working to make their congregation dementia-friendly.
“We put on performances for our elders and play games with them. This year, we established a new memory café program, which came directly from Alter,” he said. “They are a safe way for our elders to gather socially with their care partners and build support networks. We are expanding these to occur quarterly.”
The congregation has also implemented shortened six-minute church services.
“It’s amazing because it’s geared toward people who may not have long attention spans or who, because of dementia or mild cognizant impairment, may not be able to focus, but they still want to get some spiritual food,” Carr said.
Carr’s team also partners with a local nursing home that allows the delivery of gifts and information to residents and their families.
Faith leaders use their position within the community to address the stigma of dementia and provide evidence-based information that can elevate a family’s quality of life, Epps said. Currently, 85 churches in 14 states participate in Alter, but she plans for expansion in every state.
“Nurse-led community engagement is a great chance for health systems to really connect with and earn the trust of the Black community. By expanding on the efforts of faith community nursing, like Alter, health systems can step up and offer their own special resources to provide advocacy and support tailored specifically for African Americans,” Epps said.
Faith in action
Alter is only one of multiple projects Epps and her team at the Faith Village Research Lab manages to improve access to dementia resources and conduct research through communities of faith.
Tasha Wilson, her husband, Kevin, and her mother, Fayretta Braggs, were connected to the Faith-Based Home Activity Toolbox, called the Faith-HAT study, through Epps. The family qualified for the three-month study that collected information from activities they performed, survey responses and caregiver journal entries.
Braggs had initially suffered a stroke in 2021, which left significant damage to her brain. A diagnosis of vascular dementia hit the Wilsons hard as they became full-time caregivers and grappled with the complexities of navigating Braggs’ health care, insurance and suitable support services. By participating in Faith-HAT, the family found just what they needed: solace and support.
“We loved the experience because it connected us with creative ways to spend time with God together as a family,” Tasha Wilson said. “It was in those moments that I didn’t feel as angry about mom’s condition and was able to focus back on allowing God to be present in that moment.”
The toolbox provided guidance on dementia-friendly music, videos, Bible scriptures and activities. The Wilsons created a routine using the tools, especially the selection of uplifting gospel music.
“Kevin and I would use the music playlist for the morning as we would get mom ready for adult daycare. We especially used it in the doctor’s office or during hospital visits to keep her calm. Depending on the day, we would throw in the coloring and puzzle activities, but we stayed consistent with having dementia-friendly videos as our family time,” Tasha Wilson said.
Fayretta Braggs died peacefully surrounded by family in 2023, but the ability to lean into their faith while having practical support is a happy memory the Wilsons treasure.
“This box gave us memories that I will cherish for a lifetime as we remember mom,” Tasha Wilson said.
The outcomes from the Faith-HAT study have not yet been published, but the team anticipates feedback will be overwhelmingly positive.
Finally being seen
The Wilsons now lend their experience and testimony to Caregiving While Black, an online course developed through Epps’ team meant to teach African American caregivers how to navigate health care systems and home life and to manage their own self-care.
The six-week course includes participant interviews that will allow the team to examine each caregiver’s sense of confidence in providing care for their loved one.
“Just having quality resources in this process is so vital and so valuable,” Tasha Wilson said. “I am so thankful for Dr. Epps.”
Epps is proud to know the impact these programs are having.
“For the first time ever, a lot of these communities feel they are finally being seen,” said Epps. “I think that’s the importance of my work. I hear them, I’m responding to them and I’m bringing it to them first. The communities I work with are now able to advise and influence future programs that can help all.”
For more information about Epps or her projects, email EppsF@uthscsa.edu.
Anitra Mostacero
Anitra Mostacero is a retired U.S. Air Force senior master sergeant, a mother, a recent grandmother, reigning Miss Meridian Idaho 2024 and a person living with young-onset dementia. She was diagnosed in her early 40s.
Mostacero met Fayron Epps, PhD, RN, FGSA, FAAN, through her work with the Black Dementia Minds support group through the National Council of Dementia Minds.
“My focus is to combat stigma and share information about people living with dementia,” Mostacero said. “We advocate like crazy. We speak to medical students, caregivers and church parishioners on how to live well and manage challenges. Dr. Epps is an important bridge for us and the council’s advisory group. Her counsel is so important for everything we do.”
