Home » News & Events » Aging Well: Spotlight on Young Onset Dementia Care
A Calling to Care for Others
“Everyone knows someone who has dementia,” declared Joyce Schneider, who went on to list her mother and a very close friend as her loved ones who received the devastating diagnosis. It became a call to action for Schneider, which led her to a new career at the Jewish Council for the Aging.
It was devastating enough that her mother suffered from dementia for 10 years, but her move into an assisted living facility during the pandemic delivered yet another horrible blow. It meant Joyce couldn’t be with her. “COVID hit, and the bottom of life fell out,” she said. She quickly jumped into the role of advocate for those who could no longer advocate for themselves.
Then, about five years ago, one of her closest friends, who was only in her late 50s, was diagnosed with Young Onset Dementia (YOD). “It felt very different than when someone is in their late 80s,” she recalled. “If you are 58 or 62, your whole world just sort of falls apart. You look at your grandpa. You can’t believe it’s happening to you.”
Joyce began helping at JCA’s Kensington Clubs, where her friend became a member. The program was wonderful, she recalled, but her friend, as well as others with YOD, “stood out like a sore thumb.”
People who are diagnosed at an early age often still have children living at home, are working at jobs, and feel like they are at the prime of their lives. Their diagnosis changes everything. Joyce turned to Colleen Kemp, JCA’s Director of the Gorlitz Kensington Clubs Social Adult Day Programs, and together they created a space for younger people with a dementia diagnosis to help them realize they were not alone.
It has been almost two years since the monthly YOD social engagement group, Kesher Cafe, became a reality. It is a meeting space for adults with YOD that began slowly with just four adults and their care partners participating in a two-hour session on the first Sunday of every month. About one year ago, Kesher Cafe was awarded a grant, and weekly four-hour sessions on Wednesdays were added. Members range in age from their mid-fifties to early 60s. Their care partners enjoy the free time on Wednesday, as well as participate in a support group during the Sunday program.
Like Kensington Clubs, Kesher Cafe members engage in art and music programs, talk about current events, and enjoy fitness and wellness activities. But at Kesher Cafe, they engage in some heavy discussions as well. “They wanted to talk about what it feels like to be a burden to your caregivers and your kids,” Joyce said, adding that there is a strict policy that what is said at Kesher Cafe stays at Kesher Cafe. The members also talk about the latest news in the field of dementia. Some of the members are on new drugs, and they share their reactions, she said.
Besides working at Kesher Cafe, Joyce spends time spreading the word about the program and fundraising for it. “I am not a good fundraiser except for the things I really believe in,” she explained. “I feel really strongly, if you sit on a board, if you get involved, then you should share it with your friends.”
She continued, “All you have to do is ask and tell people about the work” JCA does. People relate. They understand it doesn’t matter who you are; you can be diagnosed with dementia. Her son has four close friends whom he has met since he was in middle school. “Two of their mothers have young onset dementia , YOD,” Joyce said.
This situation is only going to grow as more and more people reach their senior years. “The need is going to be so fierce, and the resources aren’t there,” she said, noting that Kesher Cafe is the only YOD social day program in all of Maryland. “We are really making a difference.”
As each Wednesday session draws to a close, the group discusses a quote. Recently, that quote was, “Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.” This quote, which is attributed to Voltaire, led to a discussion, and each member went home with a printout of it to remind them that their life isn’t over.
