Progress on the Cain Center for the Arts

Compassionate Connection

Support for frontotemporal lobe dementia caregivers in Cornelius

by Allison Futterman photos courtesy of Charles Elligson

Although many support groups have stopped in-person meetings because of the pandemic, the frontotemporal lobe dementia (FTD) group still has monthly meetings in Cornelius. Providing a lifeline to caregivers/loved ones of people impacted by FTD—the meetings are a place to find and exchange support and information. Leading the effort is Charles Elligson.

He’s a volunteer, and is an Ambassador for the Association for Frontotemporal Lobe Degeneration Association, which describes FTD as “The Cruelest Disease You’ve Never Heard Of.” Frequently misdiagnosed as Alzheimer’s, stroke, or depression, it’s actually the most common form of dementia for ages 40 to 60.

Elligson has always been someone who has worked to make a difference. His professional life reflects service to others—first as an educational missionary, then as director of several group homes, and eventually working at the Mecklenburg County Department of Social Services. It was there that he met his wife Jan, a social worker at DSS.

After Jan retired in 2004, he noticed there was a problem. Normally a very busy and active person, she became lethargic. She developed aphasia, a condition which robs people of the ability to communicate. Elligson took her to one neurologist, and then another. They both diagnosed Alzheimer’s, but he had a gut feeling that it wasn’t. He wouldn’t give up trying to find the proper diagnosis and help for Jan. His journey took him to Duke, where they got an answer: FTD. He remembers that day well. The doctor was matter of fact, lacking any compassion. It was a terrible, long drive home. Jan was very angry.

Behavior changes are a part of FTD, and one of the most difficult aspects for caregivers. People with FTD can be combative, make uncharacteristically rude and offensive comments, become reckless, and have aggressive outbursts. “The behavioral components took me a long time to come to terms with. Logically, I knew it was the disease and not really her. But as the husband, it was very difficult,” says Elligson.

When he joined the group himself in 2009, he found it provided a lifeline. “It was magical,” he says of the experience. It was a way to connect with others who could relate to his situation, which had been very isolating. He started leading the group several years later, and spearheaded the creation of the Cornelius group.

Elligson devoted his life to taking care of Jan for seven years, until she passed away in 2011. He calls the experience of FTD “a living nightmare.” But his commitment to Jan never wavered, as unimaginably challenging as it was. Although he got remarried in 2015, his bond with the FTD community remains as strong as ever.

FTD/AFTD Caregiver Support Group

Third Monday of Each Month | 10:30 a.m.-Noon Mt. Zion United Methodist Church | 19600 Zion Avenue, Cornelius For meeting information, contact Charles Elligson at charles41elligson@gmail.com.