Dementia-care advocates gather to learn

By Dan O’Mara

LAKE JUNALUSKA, North Carolina—People with dementia and other neurocognitive impairments are typically viewed from a medical perspective—a critical perspective, for sure.

“But when you see people only through the medical lens,” retired UMC Bishop Kenneth L. Carder said, “you’ve got a very narrow focus on the brain—and we are much more than that three-pound organ.

“We need, therefore, to expand the lens through which we view people with neuro-cognitive impairments, because the medical lens, important as it is, focuses only on symptoms, and the symptoms are all losses, and the losses mean diminishment. And since we live in a culture that tends to value people in terms of capacities, diminished capacities means diminished personhood.”

Carder, who served the Nashville and Mississippi areas in a dozen years as an active bishop, knows better than most what it means to live with dementia. His spouse, Linda Carder, died in 2019, a decade after she was diagnosed with frontotemporal dementia—a progressive, incurable and ultimately fatal disease that takes a toll mentally and emotionally, as well as physically. Carder served as her primary care partner throughout their journey with dementia.

His 2019 book, “Ministry with the Forgotten: Dementia Through a Spiritual Lens,” has become a must-read for anyone living with dementia and for those who desire to come alongside and walk with those who are serving as care partners.

Carder was among 20 faith and community leaders who shared experiences from lives lived with dementia during a three-day “foundational event” organized by the Dementia Care Ministry Network. With the theme “Creating Hope: Nurturing Christian Community Through Dementia Care,” about 60 United Methodists gathered Nov. 14-16 at Lake Junaluska, North Carolina. A dozen of the attendees, including Carder, represented ministries from South Carolina.

This newly formed network represents a collaboration among United Methodist laity, clergy and agencies who recognize the growing number of creative local church ministries with individuals and families who are living with dementia. Their goal: To connect existing ministries and inspire additional initiatives in more local churches so as to create a movement of caring ministry within the United Methodist Church and beyond.

“When Linda talked about her fear of the progression of dementia,” Carder recalled, “one of her fears was, ‘I’ll forget who I am; I’ll lose my personhood.’ And in our culture, we even talk that way: ‘They’re only a shell of a person.’ ‘They’re not the person they used to be.’

“I want us to broaden the lens through which we view people living with dementia to the lens of grace—a much broader lens—because that’s what we in faith communities offer uniquely. We offer a different way of viewing people, and we offer a different way of accepting people.

“What is grace? Grace is God’s presence and power. Where do we see God’s presence and power at work when we are relating to people living with dementia? What is God up to? What’s God doing here? I know when Linda was diagnosed with her frontotemporal dementia, I began to ask that question.”

And since God is all around us, grace is all around us—broadening the lens so that we’re not seeing people only through their symptoms, through their losses.

“We’re seeing them as part of this ongoing work and presence of God, the God of grace.” Carder said. “And therefore there is always hope. There is always love. There is always something generative in this context because God is universally present.”

For the Rev. Bryan Pigford, pastor of Cokesbury United Methodist Church in North Charleston, it wasn’t the first time he had heard Carder’s take on ministry with people living with dementia.

“Bishop Carder was my Methodism professor in seminary, and then I took his Dementia Ministries class,” said Pigford, who is leading a team of South Carolina lay and clergy in developing a dementia care support network within the conference. “One of the most valuable lessons I learned in that class is how important our ministry of presence is—to simply be present.

“I’m in my third appointment now, and in every appointment that I’ve served, dementia has been prevalent—whether we want to recognize it or not and recognize it as a growing edge of our ministry. So we’re looking to start a network of local churches within the South Carolina Conference that can provide respite care, that can provide caregiver support, that can provide the education our clergy and laity need to be able to engage with our church members who have dementia.

“We are really in the infancy of this, and we’ve gotten a lot of good ideas while we’re here. We’re looking forward to seeing where God leads us from here.”

Dr. Fayron Epps, director of community and research engagement at the Woodruff School of Nursing at Emory University, is the founder of ALTER, the only nurse-led dementia friendly congregation program, which partners with African-American faith communities to provide them with the necessary tools and  resources needed to support families facing dementia.

Denial has long been part of the culture in her community, she said, even in her own family.

“We all know that dementia does not discriminate—race, age or gender,” Dr. Epps said. “But in the Black community, we weren’t talking about it. We weren’t doing anything about it.

“I was reading the Alzheimer’s Association Facts and Figures, and I saw how this disease was disproportionately impacting some communities. And I said, ‘No, that’s not right. This is a lie because how am I, a nurse for so many years, a member of one of these communities that they are talking about—and even I have no clue.’”

Retired Bishop Lawson Bryan, during his time as pastor of First UMC in Montgomery, Alabama, helped foster and grow what is now a thriving Respite Care Ministry that serves as a template for how local churches can engage with their community.

Bryan reminded those in attendance at Lake Junaluska of the importance of ministry with those living with dementia not just on the individuals, but on their communities, as well.

“Are you aware you’re on the leading edge of addressing a major social need?” he asked. “That this is getting out on the edge and helping society in a way that it is not being helped. Are you aware that whatever you’re doing in dementia care ministry, you are demonstrating that caring is actually discipleship, that it takes everything Jesus talked about—healing the sick and raising the dead and cleansing the lepers and casting out demons—and puts it on the street, and we see it happen.

“And then are you aware—in addition to being on the leading edge, in addition to demonstrating caring is discipleship—are you aware that you are engaged in asset-based community development? When the church helps the community achieve something it has needed to do but didn’t know how to do, then the church becomes an asset. So are you aware that all of that is happening in your life already?”

Interested in learning more about where God is leading South Carolina United Methodists in ministry with those living with dementia? Contact Pigford at [email protected].

O’Mara is communications director for the South Carolina Conference of the UMC.

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