PMDC Lewy Body Dementia support group offers resources and reassurance for caregivers

PMDC Lewy Body Dementia support group offers resources and reassurance for caregivers

By Sean Gorman

Looking back, Debbie Bryant recognizes some of the early signs that indicated her husband Bill was struggling with Lewy body dementia (LBD).

“My husband would have trouble coming up with words,” says Debbie, who lives with Bill in Glen Allen, Virginia. “So he would make up his own. There was definitely something wrong with him.”

Bill also had “really bad nightmares,” she says.

Since he’s a Vietnam veteran, Bill’s nightmares were initially thought to be the result of PTSD. But Lewy body dementia can also cause the kinds of sleep disruptions Bill was experiencing. Before seeking care at VCU Health, Bill underwent testing and went on a series of medications. Nonetheless, the root cause of his symptoms remained elusive.

“We went through two or three years in a haze really because he just wasn’t himself,” Debbie says.

Eventually, Bill was diagnosed with Lewy body dementia in 2019. After that, the couple’s care journey led them to the VCU Parkinson’s and Movement Disorders Center (PMDC). But Bill, 75, isn’t the only one receiving support at the center. In addition to seeing a PMDC counselor to cope with caregiving challenges, Debbie is also part of a support group at the center for people like her who are themselves supporting a loved one with Lewy body dementia.

Caring for Caregivers

Following Bill’s diagnosis, Debbie sought out Facebook groups for LBD. During an office visit with Matthew Barrett, M.D., Bill’s PMDC neurologist, she learned about the center’s caregiver support group, which is called The Other Additional Dementia (TOAD).

“He asked if I would be interested in attending, and I said ‘definitely,’” she says.

Barrett says the support group offers caregivers coping strategies and the knowledge that others are facing the same challenges they are.

LBD can be particularly demanding on caregivers given the range and complexity of symptoms, Barrett notes. It can cause motor control issues, hallucinations, sleep disruptions and autonomic symptoms like a sudden drop in blood pressure, he adds.

“The people taking care of the individuals who have these diseases have become isolated because of the needs of the patients,” Barrett explains. “We don’t have ways to slow this disease down or make it go away, unfortunately. But there are better ways to cope and manage with it. Providing an outlet where caregivers, who are often family members, can learn from each other, support each other and also learn from experts in the field outside of a clinic visit is a very valuable resource.”

Laura Wadsworth, a community member and a nurse by training, volunteers as the co-facilitator of TOAD along with Bonnie Mahl, the PMDC’s senior community engagement and outreach coordinator. Wadsworth and Mahl help lead discussions and organize the speakers who meet with the group. TOAD meets monthly, except for July and December, at the VCU Short Pump Pavilion, and caregivers can also attend virtually.

A Source of Support

Debbie, who started attending the support group more than a year ago, says it offers coping strategies as well as answers about medications and other aspects of LBD care. And it provides camaraderie for those who attend.

“It’s good to know that there are other people who understand what you’re going through,” Debbie says. “It’s important just to know that there’s support if you need it, that there’s somebody there.”

Through the caregivers group, Debbie met Sarah K. Lageman, Ph.D., a PMDC neuropsychologist whom Debbie turns to for counseling while caring for Bill.

“She makes great recommendations,” Debbie says. “With Lewy body dementia, you have these ups and downs. You just never know, and that’s the worst part of it. You’re always on edge.”

In addition to the care she and Bill get at the PMDC, Debbie continues to turn to the caregiver support group for insights on how to deal with the disease’s impact on the couple’s lives.

“I think the main thing to know is that you’re not alone,” Debbie says of meeting with other caregivers. “It’s very beneficial.”

For more information about the PMDC’s Lewy body dementia caregiver support group (TOAD), and other PMDC support groups, please contact Bonnie Mahl at Bonnie.Mahl@vcuhealth.org.