How can faith leaders help prevent dementia and support people and their loved ones living with Alzheimer’s in their communities? What will they need to be successful?
That’s the question an interdisciplinary team of students from UGA’s College of Public Health sought to answer as part of a mini-grant program aimed at addressing health equities.
The program, launched in fall 2018, asks interdisciplinary student teams to formulate a community research project that addresses a public health problem confronted by underrepresented or otherwise marginalized or underserved members of the local community.
For this project, student researchers Hope Grismer, Niamh Keogh, Sloane Sengson and Harper Pendley partnered with UGA’s Cognitive Aging Research and Education (CARE) Center to ask how the dementia care and prevention experts can work with faith communities to help their work reach more people in need.
More than 6 million Americans are living with Alzheimer’s disease or dementia. By 2050, that number will more than double. In 2022, family caregivers spent more than 650 million hours providing unpaid care for loved ones in Georgia alone. According to the Alzheimer’s Association, more than half of those caregivers lived with a chronic disease, and a quarter lived with depression.
Yet, medical providers and social support for people living with dementia and their caregivers are limited in rural communities. This disparity is felt disproportionately by marginalized and low-income families, who may already struggle to access health care. That’s where the CARE Center has stepped in to build bridges between the emerging research and expertise in dementia care housed at UGA and Georgia’s rural counties.
Faith leaders can bridge the care gap
Faith communities have a long tradition of stepping in where help is needed. Yet, formal partnerships between public health academics and faith communities are rare.
“It has not been common practice, but a lot of public health research is beginning to see the power that faith communities can have, being very strong and integrated into people’s everyday lives, especially in the South,” said Sengson, a second-year Master of Public Health student.
Any kind of health intervention or education program, she explained, requires community champions if it’s going to succeed long-term. Faith leaders can be critical stakeholders to the sustainability of rural community health programs.
The CARE Center has developed tailored resource guides and education materials for 10 rural communities where CARE is actively engaged, and they’ve trained community-based UGA faculty to deliver brain health and dementia modules alongside their general nutrition and health programming. These materials were born from hours of listening to what community members, practitioners and faculty say they needed.
The same attention was needed to understand how CARE could reach and integrate faith leaders into their mission. The students’ project centered on an evaluation of existing CARE materials.
“We were trying to understand how rural faith leaders utilized caregiver education, if they did, and their perceived confidence in using caregiver education,” said Sengson, “and to get advice or recommendations for how to improve it with the hopes that they might adopt that education.”
Caleb Snead, a dual health promotion bachelor’s-MPH student, was tasked with delivering the education to focus groups of faith community leaders in Clarke, Oconee and Hart counties. Snead had been conducting graduate research with the CARE Center and was excited to work with fellow public health students to dig into research questions he’d been exploring.
“The things that I wanted to know personally, just from my research and my relationships with these communities was specifically, how can we help?” said Snead.
The students held listening sessions
Over two sessions, Snead presented the CARE education materials, while Sengson and her team members led the group discussions. They then analyzed the group’s feedback to derive recommendations for modifying the materials.
Focus group participant Gale Hulme leads a lay ministry in Hart County in northeast Georgia. She said she was struck by the CARE Center’s genuine desire to learn from the community.
“The panel was an expert panel and gave great information, but I was even more interested in the way the whole session was handled to try to get information from the participants. In other words, what are your worries? What are your woes? What are your issues related to this topic? I could tell that the CARE Center was in a learning mode,” said Hulme.
The main takeaway was a need to develop a paired approach to training faith-based communities, where faith leaders offer a spiritual underpinning to the evidence-based information the CARE team is best equipped to provide.
“People want answers, right? And sometimes the faith leader doesn’t have all the answers, and sometimes the doctors don’t have all the answers. But I do think in tandem, we can address the concerns as much as possible,” said Bobby Malicoat, the pastor of South Grove Church in Athens.
“It seems like in large part, they want resources, they want access to education,” said Snead. “We hear a lot that pastors are asked by the congregants, ‘What do I do about this diagnosis?’ And oftentimes, [they answer], ‘I’ll pray for you.’ They want something other than “I pray for you.”
Having dementia education materials and resources available also provides another layer of support to faith leaders, expanding their awareness and empathy as they work with care receivers, said Hulme.
“When care receivers come to us, they’re in a very broken place,” said Hulme. “They feel like they’re at the end of their ropes, and they don’t have anyone to talk to or anyone to turn to.”
Another key outcome of the project, said Snead, was that it “really solidified, one, that we are going in the right direction, but it also helped us to really straighten that line.”
Sengson sees the project as a good starting point. The team only had a narrow time frame to recruit participants, and she would have liked to have included a greater diversity of faiths in the focus group.
Meaningful public health work brings the community to the table, she said, “but it’s an inclusive seat, and it’s a safe seat, so that people feel like they can learn and grow and be a part of this work.”