A passion for helping those with dementia
Elaine Rose’s husband had already been diagnosed with frontotemporal dementia (FTD) — a rare group of brain disorders caused by progressive nerve loss in the frontal or temporal lobes of the brain — when she knew that she could no longer care for him on her own. He’d been exhibiting “quirkier” behavior for a while, and it was getting difficult to provide him the best quality of life without any help.
After a quick tour of Arden Courts in Kensington, Md., she was second guessing herself about moving him to a memory care community. “I felt guilty. Like I hadn’t suffered enough,” she explained.
It was the community’s marketing coordinator Linda Ryan who helped convince her “it was time.” Within a few days, Rose had moved her husband into the memory care community. “It saved my life,” said Rose. Her husband lived there happily for the final five years of his life.
Though Ryan was simply doing her job, it was her passion, knowledge and care that inspired Rose to listen and accept the help she needed. And it wasn’t the only time Ryan helped her.
When Rose was looking for a support group for FTD, something that didn’t really exist at the time, the marketing director took it upon herself to facilitate the creation of one.
Ryan got permission to start a group at Arden Courts, brought in speakers, and found a social worker, Miriam Buckley, who ended up co-coordinating the group with Rose.
“[Ryan] pours herself into all of this,” said Rose. “Helping people. Getting word out and educating [about dementia].”
Despite all the fanfare from her friend, Ryan says she just wants to spread awareness about the true nature of dementia — that it is progressive, there are varying levels of it, and that individuals with dementia are still living, functioning people.
“Some people write off Alzheimer’s and dementia patients like they aren’t ‘there’ anymore. But dementia does not have to be so sad,” she explained. “I want our residents to have a blast. It’s so much more than just filling a bed for me.”
After a rewarding 12 years at Arden Courts, Ryan is both sad and excited to be stepping down and retiring, though she isn’t done working to advance dementia care. She’ll take on a position as a part-time programming assistant at Friends Club, a men’s support group for those in early stages of dementia.
“I’ll be talking to the guys, telling stories, engaging them,” she said.
Why she cares
Ryan had been working as a sales trainer for Xerox for 23 years when her mom was diagnosed with Alzheimer’s. She went home to visit her in New Jersey, and the family decided to move her into a dementia care community. Though prepared for the worst, her mom thrived there. “She really loved it,” said Ryan.
She spent a few months there getting her mom settled, and the experience was enough to convince her to change fields. Ryan briefly took a position with a Sunrise community before being recruited by Arden Courts in Potomac, Md. She eventually moved to the Kensington location, and she’s been there ever since.
At Arden Courts, Ryan has made it her mission to understand all the nuances of dementia, and to help others understand and obtain the resources they need to help themselves.
In Rose’s case, she knew that caregivers of loved ones with FTD have a very different experience from those with other types of dementia.
“FTD is a disease that hits people in their 50s and 60s. Their families are young, and their needs are very different than just taking care of an elderly person,” she explained.
But the work is tiring. Alongside her regular marketing duties, Ryan networks, gives talks, facilitates relevant programs and engages the residents — even taking walks with some of them at night to keep them company.
Some might argue her role is more expansive than a marketing director, with some even confusing her for a social worker. “I’m just very passionate about dementia care, and [believe] that people with dementia can have a high quality of life,” she said.
The long hours can be tough, though. “I don’t know how to do my job in 8 hours [a day]. I can’t. I went on vacation, and came back and felt fantastic. But in a few days, I was tired again. That’s when I knew it was time [to retire],” she explained.
In retirement, Ryan will continue to serve on the speaker’s bureau for Montgomery County’s branch of Dementia Friendly America, a national network of communities, organizations and individuals trying to ensure local communities are equipped to support people living with dementia.
She is especially passionate about educating people to understand that people “live with” dementia; they don’t “suffer from it.” She also says it’s important how a person approaches and speaks to those with dementia, and that the interchange can be beneficial to them as well.
“If you see someone struggling to pay at a grocery store — their money confusing them — people stand in line and just get mad,” she said. “If they just took a breath and helped her out, the world would be a better place.”