Removing the stigma, celebrating the gifts
Dementia workshop to empower churches through new ministry
By Jessica BrodieBy Jessica Brodie
NORTH CHARLESTON—As a pastor, the Rev. Bryan Pigford has seen it over and over again—that deep, almost knee-jerk dread people experience when they hear the word “dementia.”
“The fear is palpable,” Pigford said. “There’s almost a sense of, ‘If we ignore it, maybe it doesn’t exist.”
But the truth is that dementia does indeed exist, and it’s growing rapidly. More than 122,000 people in South Carolina are currently living with a dementia diagnosis, and that’s not including those not yet diagnosed or who may not ever be diagnosed. Beyond that, there are more than 219,000 people caring for them. In the nation as a whole, roughly one in nine Americans aged 65 and older are living with dementia. The percentage skyrockets with age.
It’s a reality that touches every family, every community and certainly every church.
Instead of fear, however, a group of dementia-care advocates want South Carolina United Methodist churches to embrace the disease as an opportunity for love and ministry, and an opportunity to bring about the kingdom of God here on earth.
On May 28, the conference’s South Carolina Cognitive Connection Ministry is hosting a Dementia 101 Workshop at Cokesbury United Methodist Church in North Charleston to help mobilize and educate churches and individuals about ministry with people living with dementia. Slated for 9:30 a.m. to noon, the event will feature informative, practical and inspirational information from United Methodist Bishop Ken Carder and South Carolina Department on Aging Dementia Care Specialist Tori Anderson. The goal is to equip churches to take next steps toward a ministry with people with dementia.
Pigford, who pastors Cokesbury and chairs the Cognitive Connection Ministry, said he’s excited about the opportunity this event will have in removing some of the deep-seated stigma around the disease.
“Part of what we’re trying to do is let churches know they are already truly equipped to be in ministry with those with dementia,” Pigford said. “It’s already there in their congregations, and they already have all the tools and know-how they need.”
It’s just about removing the stigma and opening eyes, he said.
Carder is a leading advocate for dementia ministry across the denomination. His late wife, Linda, developed frontotemporal dementia while he was teaching at Duke Divinity School, and his 2019 book, “Ministry with the Forgotten: Dementia Through a Spiritual Lens,” has become a must-read for anyone living with dementia and their caregivers.
Anderson works with the South Carolina Department on Aging’s Caregiver and Alzheimer’s division to educate and connect people with resources to help them navigate the dementia journey, and she’s discovered there is what she calls “a severe void” in the support and information people need.
Now, the church and state are partnering to help faith communities learn how they can help bridge the gap for people living with dementia, ultimately enabling churches to step up and truly make a difference.
Celebrating the gifts of those with dementia
One of the key goals of the workshop is to help people understand that people don’t lose their worth and value when their cognitive abilities change.
Carder said the idea of dementia threatens our very sense of self-worth—particularly the realization that we may lose the awareness of who we are, the memories of our past or even who our loved ones are. After all, we live in a society that puts a high, almost idolatrous value, on our capacities.
“We’re a hypercognitive society,” Carder explained. “We’ve bought into the Cartesian notion, ‘I think, therefore I am,’ so we assume, ‘If I cannot think, then I am not.’”
But he noted the Christian community offers an antidote to that—our value, our worth and our identity do not lie in our capacity, but to whom we belong: God.
And we begin to see dementia through the lens of grace.
“Churches offer so much of what is missing in our current society’s approach to dementia. We are persons of inherent grace and dignity whatever our capacities or lack of capacities,” Carder said.
Pigford said people often miss the gifts that dementia can reveal depending on the person and what stage they are in. He said someone in an early stage of diagnosis might witness about how a dementia diagnosis is not an immediate death sentence, while someone who is more advanced can force us to truly be present in the moment.
“Maybe they won’t remember I was there, but in that moment, I am there with them making them feel valued and safe,” Pigford said. “We’re encountering Christ.”
Carder said one of the greatest gifts Linda taught him was expanding his capacity to love without reciprocity. He said he grew more in the fruit of the spirit in the ten years she lived with dementia than in any decade of his life.
“I still have a long way to go, but if there’s any great need in our churches, it’s for us to love without reciprocity, to expand in our capacity to love,” Carder said.
Anderson said that is her key hope—helping people understand how much they can grow and contribute to supporting and uplifting people who are on this diagnosis and caregiver journey.
Carder agreed: “We want congregations to know they have a unique contribution to make in becoming a community of acceptance where the gifts of people living with dementia are received and celebrated.”
Equipping so we can lead the way
Another important workshop goal is to help equip people with the tools and information they need.
Anderson said she often encounters people who genuinely don’t understand dementia, as well as how different its progression can look for each person. While there is no cure yet, there are a lot of interventions that can help, as well as resources.
“I find people say, ‘Oh, I didn’t realize there were things I could do to reduce the risk, didn’t know there were drug therapies or resources for me to take a break from caregiving,’” Anderson said.
Anderson said isolation can be a major factor in worsening the progression of the disease, and churches can play a big role in alleviating that. She said there is a huge gap in dementia care and awareness in rural areas, and churches can aid some of most underserved areas in the state.
Carder agreed, noting that every person’s dementia experience is different, but what universally seems to help is surrounding that person with love, grace and support.
“We tend to assume once there’s a diagnosis that this person’s contributions are over, but many people function very highly for a long period of time, for years,” Carder said. “We can’t predict the progression, can’t generalize.”
For example, he listed up the example of Dr. Rebecca Chopp, who was leading the University of Denver when she got her diagnosis. Now five years in, she’s just released a book, “Still Me: Accepting Alzheimer’s Without Losing Yourself,” on how she’s been able to reshape her life for a healthy and vibrant approach to living with Alzheimer’s, showing that illness does not define us.
In the UMC, Carder said, we can do the same.
“Often we see our aging denomination as a liability, but it may be an asset,” Carder said. “Let’s see this as an opportunity to lead the way in responding rather than see it as a liability.”
‘The kingdom of God here and now’
Carder said dementia ministry can bring together powerful resources to make a massive difference in the world, as well as in the church.
“People with dementia don’t care whether you’re conservative or liberal, Republican or Democrat, or any of the things that can divide us in church,” Carder said. “This has the potential of bringing us together, moving us from an abstract faith to a concrete faith, a lived faith.”
Pigford said it’s important to remember Jesus teaches us the kingdom of God is not just a hopeful future but also a present reality.
“In engaging with our members with dementia, I hope we can get a bigger glimpse of the kingdom of God here and now in our local church communities,” Pigford said.
“And that’s also exactly how we remove the stigma—by talking about it.”
As of press time, 90 people have registered for the workshop, and Cokesbury has the capacity to host 400. They hope to bring the workshop across the state in the future.
To register for the Dementia 101 Workshop, visit https://tinyurl.com/yts3dec8. To learn more about the ministry, email [email protected].