When we think about dementia, it’s common to picture an elderly grandparent. It’s little known that adults in their 40s or 50s — or younger — can be diagnosed with dementia.
Young-onset dementia and Alzheimer’s disease affects about 131,000 commercially-insured Americans between the ages of 30 and 64, according to the Blue Cross Blue Shield Health Index. But a lack of programming for these individuals makes it difficult to find community.
People with YOD struggle to meet others living with the same condition because there aren’t many YOD-centered programs. That’s where Kesher Café came in.
Once a month, people living with young-onset dementia gather for refreshments, laughter and community on the terrace of Rockville’s Jewish Council for the Aging. This group social is known as Kesher Café, an initiative of JCA that began as a meeting of three people in December 2023, and now has nine care couples on its roster.
Kesher Café offers resources and support as well as social gatherings.
Colleen Kemp is the director of The Kensington Clubs at JCA, a Montgomery County-based program for all ages focused on older adults with early-stage dementia. She saw a need for people in their 50s and 60s who weren’t prepared for their diagnosis, lacked resources and connections for people with dementia and didn’t know what to do next.
A $20,000 grant from the Brookdale Foundation will expand the early-stage dementia program, Kensington Clubs, to include a YOD support program.
Kesher Café will go from a monthly program to weekly, meeting one Sunday as usual and three Wednesdays a month for four-hour sessions, providing respite to caregivers. The weekday sessions, which begin Dec. 11, are organized and led by certified dementia practitioners, and cost $105 per session. Six people are already enrolled.
“Colleen and her staff have been putting in time on Sundays … to create Kesher Café as a sort of gathering place for people experiencing young-onset dementia and their caregivers to support each other in a really meaningful way,” said Shane Rock, the CEO of JCA. “It was really clear in these informal gatherings that they needed to create something that was even more intensive, that was activity-based, that built upon all the things Colleen and her staff have learned in running Kensington Clubs at JCA.”
During the free Sunday social gatherings, Kesher Café participants start out by socializing and snacking on refreshments, then split into two groups. A facilitator makes announcements and participants have the opportunity to share any personal news with the group.
“One thing that people remark when they come to visit our program … is that there’s a lot of laughter, a lot of humor,” Kemp said.
After that, it’s time for an activity, which ranges from art therapy, yoga, games, or listening to a performer, followed by a group discussion. Caregivers can attend the activity with their loved one or attend a support group with a social work intern and trained JCA staff member, Kemp said.
“This really fits within the whole idea [of JCA],” Rock said. “One, we help people with needs, so people who are experiencing dementia have needs and their caregivers have needs, in terms of having respite from having to care for their loved one. Second, it’s enabling older adults to make the best use of their talents, their passions, what they can bring to the community.”
“Kesher” is Hebrew for “connection,” which Kemp said is especially important for people with YOD given the unique challenges they face.
People with dementia often experience behavioral or personality changes, anxiety, depression and cognitive decline, eventually leading to the deterioration of day-to-day function. These challenges are made more complex when experienced by middle-aged adults.
“A lot of people have this notion that people with dementia, since they have a lot of forgetfulness, they don’t have stress or anxiety,” Kemp said. “They have a lot of stress and anxiety when they’re diagnosed between 50 and 60.”
Because they are younger than 65, adults with YOD are largely unprepared for this diagnosis.
“They have children in school, they’re still working, … they’re not receiving Medicare yet, so if they stop working, they have no health benefits,” Kemp said. “We have people who are applying for Medicaid because they’ve had to spend everything, all their savings to survive. A spouse will have to take over and become the breadwinner in their family. These are the unique challenges — ‘How do we tell our kids?’”
Kemp added that one member of Kesher Café had an 8-year-old child when her husband was diagnosed with YOD, which progresses “much quicker” than if the person with dementia were older.
That’s why the group at Kesher Café engages in what Kemp calls a relaxed cognitive activity “just to exercise the brain” together. The activity can be as simple as brainstorming 20 things that are blue. It’s important that the activity is low-stakes, with no pressure to read or write — both abilities that can be impaired or lost due to dementia.
Kensington Clubs and Kesher Café have served more than 1,110 adults with early-stage memory loss since 2008, and Kemp said she hopes to reach even more.
Kesher Café partners with two outside organizations: YES! Inc. — Young-Onset Dementia Education & Support — based in Timonium, Maryland, and Lorenzo’s House, which empowers youth and families with YOD in Chicago.
On Dec. 8, Kesher Café will host a yoga and meditation program for the person with YOD and their caregiver as a celebration of its first anniversary. Kemp reflected on the past year of service.
“You really share their joys and their challenges every month,” she said. “It’s allowed us to help them reach out to other organizations for help. We’ve helped them find resources and connect to other agencies… We want to make sure that in helping them, they know they have a team behind them at JCA.”
