Dementia ministry in Georgia serves as a model for churches to care for the caregivers

Sheila Welch waits near the arched entryway of her home on a quiet cul-de-sac in suburban Atlanta. The 72-year-old greets arriving guests with the warm smile of a Southern hostess.

The 20 people in her living room aren’t just social visitors, however. Once a month, they gather to take part in a support group for men and women who are caring for spouses with dementia.

Welch stands across from a visual reminder of why, month after month, she connects these people, who seek solace and information. It’s a collage of photos of her parents, who are both now gone.

Welch’s father died after serving for seven exhausting years as his wife’s primary caregiver. She had Alzheimer’s and outlived her husband by three years.

Welch stepped in where her father left off. Navigating her grief for her father and providing care for her mother felt overwhelming and isolating. Yet out of that experience came her current vocation: coordinating the dementia care ministry at Due West United Methodist Church in Marietta, Georgia.

“Caregivers need just as much care as the person who is living with dementia,” Welch said. “Sometimes they need more.”

Nine years ago, she took over as the leader of an existing church support group. Since then, the ministry has expanded quickly. Welch and Due West have scrambled to meet demand, pursuing a twofold mission: to support caregivers and to educate faith and community leaders.

The ministry now serves as a model for other churches and includes three support groups, online resources, an educational workshop, and an annual conference for caregivers that attracts more than 300 participants.

“This is an epidemic. Families are going under. The job is right there in front of us. The question is how to rise up and meet the need,” said Welch, a lay leader who trained with dementia educator Teepa Snow.

“This is what Christ has asked us to do,” Welch said. “If we are truly loving one another, we are going to listen to him when he says ‘least of these.’ We have no choice but to step up and answer this call.”

Due West is part of a growing trend of congregations supporting both those who are ill and their families.

“One of the great tragedies for people with dementia is not that they forget; it’s that they are forgotten,” said UMC Bishop Kenneth L. Carder, a professor emeritus at Duke Divinity School whose wife, Linda, has dementia.

“Congregations can make sure that doesn’t happen,” he said. “And that inclusion should extend to their families.”

A growing need

Due West’s senior pastor, the Rev. Dr. David Campbell, said this ministry is essential.

“Sometimes God calls you to fill a void, and God called Sheila,” Campbell said. “I think she felt very much alone in her caregiving role but realized a lot of people feel that way. She realized she could share what she learned with individuals and church leaders who need this.”

Campbell said the church could have stuck with just the support groups, but the other offerings expanded its reach.

“Sheila doesn’t just help people; she empowers people. She always asks, ‘What is God calling us to do next?’ If you’ve met Sheila, you know one thing: it will not stay the same. It will expand and grow and help many, many more.”

With the limited social safety net in the United States, an estimated 75% of home-based dementia care comes from family and friends. Some 16.3 million Americans spent 18.5 billion hours performing unpaid dementia care in 2018, according to the Alzheimer’s Association. More than half had been providing that care for four or more years.

As baby boomers move further into old age, there will be more demand. The number of Americans with dementia -- 5.5 million today -- is expected to double every 20 years, according to the National Institutes of Health.

Caregivers are often called “invisible second patients.” Studies show that they face higher rates of depression, financial problems and stress. Because much of dementia care is learned on the fly, there is “no real time for trial and error,” Welch said.

Many believe churches should play a bigger role -- and one that is different from that of medical institutions.

“People with dementia are almost exclusively seen through a medical lens,” said Carder, the Ruth W. and A. Morris Williams Professor Emeritus of the Practice of Christian Ministry at Duke Divinity School.

“That lens focuses on symptoms and sees people exclusively in terms of their losses. That diminishes their personhood,” he said.

Across the country, more resources are being made available to churches, and more churches are stepping up. The University of Kentucky, for example, provides an Alzheimer’s care guide specific to African American churches. First AME Church of Los Angeles offers caregivers educational events, connecting families with local government resources and even offering respite care to watch over loved ones while caregivers attend meetings.

“Churches are trusted. Often, they’re more likely to be able to identify people who are isolated than social services can,” said Donna Benton, a research associate professor at the USC Leonard Davis School of Gerontology and the director of the USC Family Caregiver Support Center that works with First AME.

“They’re a hub of information, and they provide spiritual and emotional support so that the caregiver doesn’t fall into depression. We see churches playing a much bigger role.”

Seen through the eyes of faith, people with dementia and their caregivers are recognized for their inherent worth, Carder said.

He has thought a lot about the role churches can play. He offers pastoral care for about 40 residents at the memory care facility where he wife was cared for in Chapin, South Carolina; she now resides at home. Carder has written about this experience in a blog and a new book, “Ministry With the Forgotten.”

Carder urges faith leaders to visit people with dementia and their families. He suggests that the church should formalize this ministry, commissioning and training people to support caregivers and people with neurological cognitive impairment just as it might commission people to minister on foreign missions.

“Families often withdraw from social contacts outside of their loved one,” Carder said. “They become a part of that isolation and marginalization related to dementia.”

Sometimes, leaders are reluctant to visit, believing that the person will not know them or remember the visit.

“That is not the point,” Carder said. “The point is your presence matters.”

He said that people with dementia live with a form of imprisonment.

“A large part of our Christian tradition talks of exodus and liberation,” he said. “God is also especially present with and ministering through the weakest and most vulnerable.”

‘They help each other’

Welch is doing her part and then some.

At the spouse support group that meets in Welch’s home, the company may matter as much as the practical discussions.

The 20 cluster in the kitchen around the decaf. For people carrying such a heavy burden, there is an unexpected note of happiness that permeates the conversation.

“Some people have told me they don’t want to come to these groups,” Welch said. “‘I don’t want to go to a pity party,’ they say. But if we’re not laughing here, something has gone terribly wrong.”

After visiting, the group circles up in her living room.

“What concern do you want to bring up?” Welch asks.

The conversation turns practical.

“My wife has been in the hospital twice this past week,” says one member. The medicine she was on for a urinary tract infection wasn’t working well. The group discusses how UTIs can exacerbate dementia symptoms. From their collective experience, they talk about what to watch for.

“The whole goal of these discussions is to meet their needs before they walk out the door,” Welch said afterward. “They give me the gift of being so open about things that many would never even discuss with the doctors. Many will experience some of the same challenges, and they help each other.”

In order to reach more people than just the couple of dozen who can come to her home, Welch and Due West have expanded to offer resources so that others don’t have to learn on the fly as she did.

Due West offers an online Dementia Tool Kit, including resources for churches to create their own programs. There are flyer templates, notes from Welch’s workshop, a tip sheet for visiting people with dementia, links to videos, and the caregiving manual written by Welch and her husband, Kim -- “Still Standing: A Guide for Loving Through Alzheimer’s and Related Dementias.”

Welch makes sure that all caregivers who come to the support groups, as well as the attendees at the conference and the workshop, get a copy of “Still Standing,” which answers the 25 most commonly asked caregiver questions.

The manual covers issues such as “What’s my job now?” and offers advice on topics from becoming an empowered caregiver to the best ways to communicate with doctors.

“Most caregivers leave the doctor’s office after receiving the terminal diagnosis of dementia with little or no resources,” Welch said. “I wanted something concrete.”

Teaching the caregivers

Central to the Due West ministry are two annual gatherings. This September, Welch and dozens of volunteers will host the church’s eighth daylong care partners conference. And in March 2020, Welch will convene the third faith and community leaders workshop to teach other churches how to start or support their own dementia ministries.

These gatherings have grown enormously since they began. The caregivers conference, which started with 35 participants, drew nearly 350 last year; the faith and community leaders workshop, more than 100.

The Rev. Terri Henkel, the associate pastor for congregational care at Alpharetta First United Methodist Church, has attended several Due West dementia gatherings. Her church will host a similar conference Oct. 5 and start a support group.

“Studies show that far too many families that provide care for an aging parent crumble under the strain,” Henkel said. “Jesus taught us to take care of the downtrodden, the people who are overlooked, the people without a voice. We are to be the hands and feet of Christ. This ministry is completely consistent with a life of faith.”

It takes about 80 volunteers working two days to get Due West’s Family Life Center ready for the conference.

Three people coordinate everything, making a conference “that looks more like a wedding reception than a dementia education event,” Welch said. There are white tablecloths and fresh-flower centerpieces. Volunteers pack blessing bags with homemade treats and Welch’s manual. They greet caregivers in the parking lot and serve attendees a homemade lunch.

The all-volunteer ministry effort has been supported financially by Due West, donations and a grant from the North Georgia Conference of the United Methodist Church.

The faith and community leaders workshop offers an action plan detailing specific opportunities for churches to minister to families. These are ideas that could work at small rural churches as well as larger metropolitan ones.

At the gathering in March, experts will talk about best practices, discussing how churches can provide respite care and appropriate spiritual care for people living with dementia.

“The hope is that this will help ministers and lay leaders gain confidence in visiting with families facing dementia,” Welch said. “At the end of my mother’s life, I prayed that the pain that she and our family lived would not be in vain. … I became convicted that our caregivers and all caregivers must be offered dementia education.”

Cynthia Snyder, who has attended the Due West gatherings in the past, brought back what she learned to her own church in Morgan County, Georgia, and helped start a support group.

“They learn from each other,” Snyder said. “One man talked about how difficult it was to get his wife to take pills. A group member suggested he grind it up and put it in her soft drink. These are little things, but you could see the relief.”

“My church embraced this role,” Snyder said. Sometimes, it’s challenging for people to attend meetings, but she said the group meets even if only two people can come.

Carder would agree and says that while there are difficulties, people in the church can experience the rewards of this work.

“This role, caring for my wife, is a way of living out my baptism,” he said. “Through this experience, I have learned to love without reciprocity. And this relationship now has convinced me that, as Paul says in 1 Corinthians, ‘Now abides faith, hope and love’ (1 Corinthians 13:13).

“In that same passage, Paul talks about how when language ceases, love remains, and I now have that validated. Love is the only thing that endures.”