Dementia 101 seeks to build awareness among United Methodists

By Dan O’Mara

What if you forget who God is?

It’s probably an unfathomable concept for most Christians to get their heads around, but for those living with dementia, it’s a real possibility.

Some 100 people pondered that terrifying prospect during a “Dementia 101” workshop—the first endeavor by the South Carolina Cognitive Connection Ministry to raise awareness about the disorder in all of its forms. The ministry began as a grassroots effort and is now supported by the Connectional Ministries of the South Carolina Conference of The United Methodist Church.

The question asked of those gathered at Cokesbury UMC in Charleston on May 28 was more than a thought experiment for retired UMC Bishop Ken Carder, whose spouse, Linda, passed away in 2019 after a decade of living with frontotemporal dementia.

“Linda, who was a Christian educator, forgot who Jesus was,” said Carder, who lives near Columbia. “Does that mean she was no longer a disciple of Jesus? No, because Jesus never forgot who Linda was.

“Dementia is more than a disease of the brain. … It is a psychosocial, spiritual reality that affects every area of our lives. It affects our relationships, our sense of community, our relationship with God or our perception of our relationship with God.

“So much of our understanding of God,” he said, pointing to his head, “is up here.”

Carder’s book, “Ministry With the Forgotten: Dementia Through a Spiritual Lens,” published in 2019, has helped equip pastors and congregations to better minister with people affected by dementia, rather than ministering to or for them.

Acknowledging that many people are hesitant to interact with people diagnosed with some form of dementia because they are afraid of saying or doing the wrong thing, Carder shared tips for “Communicating with a Person with Dementia,” a resource of the Family Caregiver Alliance: National Center on Caregiving.

Tori Anderson, a dementia care specialist with the South Carolina Department on Aging, explained what dementia is, what causes it, and just how widespread it is.

“Dementia is more of a general term used to describe symptoms such as loss of memory, judgment, reasoning, and other thinking abilities,” she said. “We all have some memory loss here and there, but dementia is something that is severe enough to impact a person’s ability to live their day-to-day lives.

Alzheimer’s disease is the most common cause of dementia, she said, encompassing between 60 percent and 80 percent of dementia diagnoses. But it’s not the only cause.

“In addition to Alzheimer’s disease,” she said, “there’s vascular dementia, Lewy body dementia, frontotemporal disorders, a mix of dementias. Globally, we’ve identified over 100 different types of dementia. But the most important thing to remember is that every type of dementia is different, and every person with dementia is different.

“If you’ve met one person with dementia, you’ve met one person with dementia.”

The Rev. Bryan Pigford, pastor of Cokesbury UMC, is among those who led the grassroots effort to create and sustain a ministry with those living with dementia.

“This is a ministry that is already growing, and we pray it will continue to grow and spread across South Carolina, because this is certainly an issue that is not going away,” he said. “And The United Methodist Church is in a unique place where we can be on the forefront of addressing this need and this ministry.”

As part of the workshop, attendees viewed the video testimony of Judi Inabinet, whose husband, the Rev. Charlie Inabinet, retired after 40 years of active ministry in the South Carolina Conference. Charlie Inabinet was diagnosed with Alzheimer’s disease in 2014, and his spouse has been his full-time caregiver in their home in Surfside Beach ever since.

“Alzheimer’s is particularly sad because it’s such a slow, draining process that just takes away who you are,” Judi Inabinet said in the video. “It’s just a sad, sad process to go through. Often, I feel like people see Charlie at this stage in his life and forget that he had a life, a life full of ministry and full of love and full of hope and full of dreams.

“That said, I think God has allowed us to slow down and enjoy things that we never would have enjoyed before. It’s given Charlie and me time together that we wouldn’t have had as consistently as we have with this Alzheimer’s diagnosis.”

Carder said he teared up listening to the Inabinets’ story.

“Loss, grief, sadness, fear, love, joy, companionship, compassion—all of these are possible for those living with dementia,” he said. “All of these are realities as we deal with this most dreaded and feared of all diseases in the American context.”

The South Carolina Cognitive Connection Ministry is planning more workshops across South Carolina in the coming year. To learn more, email [email protected].

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