The concept of “dementia cafés”— places where people, who all too often feel isolated and socially separated from their communities, can come together to relax and enjoy good company — has evolved and spread from Australia to England to Holland to Japan to San Francisco to Seattle to Santa Fe. It’s estimated that there are currently about 200 such cafés throughout the United States, designed to address the social implications of a dementia diagnosis on individuals, families, friends and caregivers.
Starting anything new is always a gamble, so as one of the founders of the Coachella Valley’s first Dementia-Friendly Café (Palm Springs, CA area), I am proud to announce that the café is beginning its third year of operation this month. At the first café, we thought we’d be lucky to have 15 to 20 people; 52 showed up. Clearly, there was a need.
Dementia cafés are not support groups or seminars or daycare. There are no presentations or literature, and no commercial promotions are allowed. It’s simply a place where people can meet others with similar experiences and concerns, and a place where everyone understands the need to just relax and enjoy being out in public without fear or embarrassment. The café is for spouses who need a break from their daily routine, or people who have been diagnosed but are still vibrant and independent, or friends who want to support other friends who are concerned about going out alone. Too often, those with dementia (and their closest loved ones) tend to sever social connections at a time when they are needed most. There are lots of online sources for information as well as local organizations that offer support groups or counseling, but the café offers a chance to leave the disease at the door and just enjoy an afternoon with others who are happy to be able to do the same.
According to Palm Desert resident Lynne Bailey, “Socialization opportunities diminish with the disease—for the one with the disease and the caretaker, also. The café is a welcoming place and gives our loved one with Alzheimer’s an opportunity to socialize without explaining, without judgment.”
One of the first challenges of the founding group was figuring out where to hold the café. Palm Desert resident Dee Wieringa, administrator at Caleo Bay Alzheimer's Special Care Center, worked with management at P.F. Chang’s China Bistro at The River in Rancho Mirage to establish a safe, social atmosphere, where people can come together in a relaxed environment.
“So many people feel isolated,” says Wieringa. “There’s so much satisfaction in seeing them come out and socialize.”We were amazed that some local restaurants with suitable space—and far from busy on a Wednesday afternoon—said our “clientele” wouldn’t be appropriate for their establishment. That kind of attitude was exactly why we decided to call it the Dementia-Friendly Café instead of using a euphemistic name. We were committed to finding ways to destigmatize the word “dementia,” since we all remembered how recently people would only whisper the word “cancer.”
Many of those who attend are dealing with Parkinson’s disease. One is Karen Kramer, a resident of Sun City Palm Desert. “We love coming to the dementia café,” she says. “We meet our Parkinson’s group there as a social event, and it is truly a lift.” All too often, caregivers get into a routine that becomes self-perpetuating. One founder is Rupert Macnee of Rancho Mirage: “My role with the café was to greet folks and to circulate, bringing people together. The experience went a long way in helping me, along with my sister, to effectively manage our father’s care. I became much more understanding of his flights of fancy. I learned to accommodate his dreams and perceptions, without blocking them, or trying to make him ‘normal.’ My expectations of how I expected him to behave changed. I knew that to allay his fears was a No. 1 priority.”
The Dementia-Friendly Café is entering its third year at P.F. Chang’s. There is no cost to attend. Participants can order drinks or food from the happy-hour menu with separate checks, but no purchase is necessary.
I don’t really believe in horoscopes, although I read them every day. As I began this column, I read mine, which said: “Relationships are not simply about getting your needs met; they are about the profound impact that you have on others and how you are, in turn, affected by their stories.” That has been true for me these past two years as I have greeted everyone who has come to the Dementia-Friendly Café each month. Please feel free to join us as we move into our third year.