About a year ago "Aroma de Cafe" was launched, the first Spanish-speaking memory cafe in Massachusetts. It is held in the city of Lawrence, in a predominantly Latino community. The room is decorated with real palm trees, pictures of coffee and cocoa fields. Traditional foods are served, and period style music plays softly in the background. The coordinators named the cafe after the scent of brewing coffee, which is evocative for most of their guests, who come from Puerto Rico, the Caribbean, Mexico and Central America.
In order to encourage and support the development of more Spanish-speaking cafes, we translated our free Memory Café Toolkit into Spanish. It includes a description of Aroma de Cafe written by the cafe coordinators, along with step-by-step instructions for starting a memory cafe, sample budgets, and templates that can be adapted for the use of a new cafe. It is now available at www.jfcsboston.org/GuiaCafeDeMemoria. The English version of the toolkit is at www.jfcsboston.org/MemoryCafeToolkit.
Please share this link with any Spanish speakers who might be interested in starting a café or simply learning more about the memory café movement. Together we can help share this model so that more and more people can benefit.
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.
Over the past several months, I have been on an extended leave while making an international move with my family. Now that we are settled, I am excited to be getting back to writing for this website, and helping in any way possible to support the expansion of social cafés for people with memory loss and their loved ones. At this time, I am looking into ways to contribute to this movement here in the San Francisco Bay Area, and will be thinking about how best to move forward with this website as well. There are likely to be changes to the format in the coming months, and your thoughts and suggestions are welcome.
Some of you may also hear from me over the next few weeks as I continue my effort to update a national list of Memory and Alzheimer’s Cafés. This list will not be kept on the Memory Café Catalyst website, but my updates are going to three people who have been working hard to compile and maintain these lists in the US:
Please visit their websites for the most up-to-date listings and also let them know about new cafés or changes in the status/dates/times of cafés that are already in operation.
Here’s to your efforts! I hope we can continue to share about them here and inspire more communities to create connection through memory cafés.
Making our communities dementia friendly is an idea whose time has come.
And memory cafés are playing important roles in galvanizing Dementia Friendly movements in the UK, Australia and now in the US. What does it mean to create a Dementia Friendly Community and how are memory cafés helping with these efforts? A recent report laying out Australia’s new Dementia Friendly Society initiative cites a formal definition for Dementia Friendly originally put forth by Sam Davis and colleagues in 2009:
“A cohesive system of support that recognizes the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way."
On a more practical level, this process can begin by asking people with memory loss and their caregivers what can be done on a community level to improve the quality of their daily lives, and then creating alliances that bring people and organizations together to implement these changes.
Additional first steps have included educating the public and creating a system of recognition that can be used by businesses who are trying to become more Dementia Friendly. The UK is addressing the education piece with their innovative Dementia Friends public campaign, which recruits people in the community to learn more about dementia and then become advocates to help people with dementia feel more understood and included in their communities. Their goal is to enlist one million Dementia Friends by 2015.
In terms of symbolic recognition, the Alzheimer’s Society has developed a new ‘forget-me-not’ inspired symbol.
Businesses will display this symbol to show that they are committed to becoming dementia friendly and that their actions have met certain criteria that support the values and standards of people living with dementia in their community. Many others are using the Purple Angel Dementia Aware International symbol featured at the top of this post.
How can memory cafés contribute?
At the most basic level, memory cafés everywhere make communities more dementia friendly simply by providing a place free of stigma where people living with memory loss and their caregivers can relax, socialize and really connect with others experiencing similar life circumstances. In the Australian report mentioned above, maintaining and expanding their Memory Lane Café program is an important element of their overall Dementia Friendly initiative.
But some organizers of memory cafés are taking it one step further and working actively to promote the Dementia Friendly movement in their communities. For example, the Falmouth Memory Café in England is working directly with their local Dementia Action Alliance, seeking the views of people with dementia on what is still needed in their community. One of the top responses so far has been the need to have a singing program, and Falmouth Memory Café has responded by helping to create a twice-monthly movement and music program called “Thanks for the Memory.” The Flamouth Memory Café website also provides a link to the national Dementia Friends sign up page, encouraging readers to join the country's broader Dementia Challenge campaign.
In the US, John and Susan McFadden have begun an ambitious project to make their Wisconsin community dementia friendly, starting with the creation of five new memory cafés.
“Memory cafés are the low hanging fruit—an easy way to start making your community more dementia friendly,” says John McFadden, co-founder of the Fox Valley Memory Project and a part-time chaplain for the memory care units at Appleton Health Care Center.
In 2011, the McFaddens published Aging Together, a book addressing the important intersection of community, friendship and living with memory loss. After traveling abroad to study the UK’s dementia friendly practices and connecting with like-minded leaders in their Fox Valley neighborhood, the McFaddens began working on a comprehensive plan to facilitate development of socially inclusive programs, accessible support services, and educational opportunities for both health care professionals and the public. You can read more about their exciting plans here.
Again, their process began with creation of memory cafés.
It is clear that these low-cost, relatively easy-to-start programs can raise awareness around dementia-related needs and are becoming an important first step in larger Dementia Friendly campaigns. And, in countries that do not yet have formal Dementia Friendly initiatives, memory café organizers and volunteers can be ‘dementia friends’—spreading the word and spurring Dementia Friendly change at the grassroots level.
We are going to hear much more about this topic in the coming year. “Living Well in a Dementia-Friendly Society” is the theme of the Alzheimer Europe meeting in Malta this October. I plan to attend and will report back on the topic here, focusing on presentations that relate to how memory cafés are contributing to this exciting new movement.
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