As the director of Greenwood House senior living and care community, Donna Sobel has witnessed the ongoing struggles of people with dementia and their caregivers.
As difficult as it is for the people suffering from memory impairment, for caregivers it can be even harder.
“Usually people with dementia and their care partner get isolated,” Sobel says, due both to a memory-challenged individual’s difficulty performing everyday activities and “the stigma where people can feel embarrassed in a public situation.”
Starting in July, Ewing-based Greenwood House will be co-sponsoring Friend’s Circle: A Memory Café the second Tuesday of each month at Adath Israel Congregation in Lawrence.
This free, nonsectarian café was developed by Sobel and is being conducted in collaboration with the Jewish Family and Children’s Service of Mercer County.
According to the Alzheimer Association, today 16.1 million Americans care for people with Alzheimer’s and 5.7 million Americans are living with Alzheimer’s, a number that is projected to rise to nearly 14 million by 2050.
Memory cafés—which are not facilitated support groups, drop-off respite programs, or education sessions—got their start in the Netherlands in 1997 and began to spread through Europe and Australia by 2000.
The first cafés appeared in the United States in 2008 and several hundred are up and running today. Friend’s Circle will be the first in Central Jersey.
When Sobel started last fall at Greenwood House, one of her goals was to explore and then determine how her organization could connect with the community and serve the healthcare needs of seniors, which is part of Greenwood House’s mission.
The idea for a memory café grew out of Sobel’s exploration of “what is relevant and what is needed in the community.”
The propelling idea of a memory café, Sobel says, is that “people with memory challenges and their family members can still have quality in their life and be able to go out and have a good time.” The café provides them with a space “to have a social time away from the disease.” Trained volunteers will serve as hosts at each gathering.
“It’s about leaving your disease and concerns at the door and coming into a place where there is no stigma, where it is fully accepting and inclusive, with no judgments, and just enjoying a couple hours of social activities,” Sobol says. Caregivers “should be able to have time with their loved one that is enjoyable and not just being in the role of taking care and doing the hard work.”
Each meeting of Friend’s Circle will include a creative activity, be it a sing-along, arts-and-crafts project, or something else. With arts activities, Sobel says, “there is no right or wrong, and that is why creative arts are so important.” She adds that they are “the last thing to go in people’s memory.”
Currently, she is on the lookout for creative artists who are experienced working with people with memory challenges.
While developing Friend’s Circle, Sobel visited Café Connection, a memory café in Cherry Hill, run jointly by Jewish Family & Children’s Service of Southern New Jersey and the Betty and Milton Katz Jewish Community Center. “People seemed to know each other and were hugging and laughing,” Sobel says of the 40 or so attendees.
At Café Connection, Sobel saw people with minimal to moderate memory challenges and their caregivers who “seemed to know each other” and were talking about prior conversations and asking about family members not present. “It was a warm, friendly, and fun time, and that’s how we envision it to be,” she says.
To give a sense of the emotional challenges posed by memory loss, Adath Israel Rabbi Benjamin Adler compares it to being a caretaker for a family member with physical limitations.
“When you see someone who is physically having trouble, but can have a normal conversation, there is a little bit of normalcy there,” Adler says. “But when you’re with someone who can’t communicate and be the person you remember, I think it is much more traumatizing for those people.”
To counter the sense of isolation that can plague both a memory-challenged person and their caregiver, memory cafés have developed where both individuals can simply enjoy together social time and a creative activity.
Adler says he looks forward to having the monthly Friend’s Circle available to his members. “I have a number of congregants who have memory issues, and I look forward to being able to offer it as a service to them,” he says. “Even if it is not a program we are running, we are the location of it.”
When approached by congregants about memory issues, Adler says, “I’m certainly around to listen and lend a caring ear and try to direct them to whatever resources I have.” That includes referring them to a professional in the field.
Another part of his role is to reassure caregivers that they are making the right choices about a family member’s care. “The reality is there is no one right way to approach it; it’s about having the right intentions and the love for your loved one,” Adler says.
At a recent Sabbath service, he spoke about different ways of approaching dementia. “Do you lie to your loved one?” he asks. “Do you always tell the truth, even though the truth is painful?”
Someone with dementia, for example, might ask where her husband is, even though he died years ago. “If you tell them the truth, they will reexperience that pain. Or do you say, ‘He or she is out getting groceries’?”
“I hear these stories from people, and people struggle with it. I try to reassure them that if they love their mom and dad or spouse, I think it shows through,” he says.
Adler sees the biggest role of a memory café as providing community, both for the person suffering memory loss and their caregiver.
“People may intellectually know others go through the same issues, but if you don’t talk to others who are dealing with the same problems, you feel alone, you feel you are swimming in a sea all by yourself,” Adler says. “Being with other people and knowing others are going through the same struggle is reassuring and helpful.”
For a person with dementia, who is often isolated at home, “just being with other people” is so important, Adler says. “It is not necessarily good conversation that they are seeking. It is just human presence. Touch, sight, a new environment, the warmth of just another’s presence is healing and is going to have a really great impact.”
For Adler, it was logical for Adath Israel Congregation to provide space for the monthly café, because they already partner host other community programs for seniors.
Members of Adath Israel often volunteer at senior programs, helping with set up and serving, and during summers or school breaks students sometimes join in. “We have built up these partnerships on senior programming,” Adler says, so the memory café “was a natural fit. We are happy to be a community hub for seniors in this area.”
Sobel already has two artists scheduled. Courtney Colletti, a guitarist who performs for Greenwood House residents, will lead singing at the July launch. In September, Barbara Dilorenzo, author and illustrator of Renato the Lion and a teacher at the Arts Council of Princeton, will lead an arts and crafts activity.
Sobel is happy to be collaborating with the Jewish Family & Children’s Service, which will provide resource information for café attendees, address any concerns related to social services, and assist with volunteer training.
Collaborating with similar agencies is not only a way to share the tasks entailed in the creation of a new program, Sobel says, but “it also broadens the connection we have with the community.”
As she has developed Friend’s Circle, Sobel has consulted with the Alzheimer’s Association, Alzheimer’s New Jersey, and the Mercer County Office on Aging.
Sobel maintains that memory cafés are a step toward developing dementia-friendly communities. More acceptance by the broader society is needed “so that individuals with memory challenges and their families do not become outcasts and do not become isolated. More education and awareness in all communities is needed.”
Although the memory café will have a resource table and representatives from Greenwood House and Jewish Family and Children’s Service available to anyone seeking more information, the café itself is not a support group and will include no open discussion about illness or memory—although it does give caregivers the opportunity to relate to other people with similar challenges. A memory café is a place for people with memory impairment and their caregivers to have fun together.
Sobel sees the memory café as being in line with the Alzheimer’s Association’s efforts “to get communities to become more dementia friendly so these people are not isolated.” Isolation, she says, causes more medical issues and can mean that people lack the resources they need. “People with dementia should still be able to have joy in their lives, and staying at home and being isolated is not going to do that.”
Although the café is free, preregistration is required. For more information, preregistration, placement on mailing list, or to learn about sponsorships for individual sessions, contact Sobel at (609) 883-5391 ext. 388 or firstname.lastname@example.org.