Friday, January 21, 2011

Memory Cafes

There is a “closed group” on Facebook where persons experiencing memory loss can share their experiences with one another, sometimes expressed humorously and sometimes with great pathos. It is a wonderful, global community of support for persons living with dementia, and I feel privileged to be included in this conversation (contact me if you would like to be invited to participate). It was from a British member of this group that I first learned about a marvelous program called “Memory Cafes.”

The program began in Holland, but it has flourished in Great Britain over the past nine years to the point where most communities host at least one or two Memory Café gatherings each month. The model varies from location to location, but its essence is creating a time (commonly two hours) and place where persons with early-stage dementia and their “carers” (to use the term employed in Great Britain) can come together to share social time unhampered by stigma, awkwardness or discomfort. One of the goals is to make certain no distinction is made between those who are living with memory loss and those who are not—all participants are simply enjoying time with one another. Refreshments are offered, and there are often games and activities. Music is an important component of a Memory Cafe. Sometimes there will be resource people present to provide helpful information to participants, but such offerings are secondary to the social dimension of the event. Often, important ongoing friendship are formed.

To date, Memory Cafes have yet to establish a significant presence in the United States; I am currently in the early stages of setting up a pilot program in our local area. I will provide helpful links below for those interested in exploring the concept. It is an inexpensive program to run, and one that makes a huge difference in the lives of persons living with dementia and those who love them. Here are a few comments from participants in Cornwall:

“This time here when I come to the Memory Café, is the only time I feel like I am me again.’”
“I come in with a stranger and go home with my husband.”


Memory Cafes put into practice everything that Susan and I write about in our book. In the United States, dementia is commonly regarded as a private matter to be contended with solely by family members and professional caregivers. Long–term friends withdraw from the relationship because of awkwardness or fear, leaving the person with dementia increasingly isolated. Memory Cafes recognize that we are ALL living with the reality of dementia, and the most appropriate and essential response is to create hospitable spaces in our communities where friendship, love and laughter can be shared by all. It is a model I would like to see flourish here.

Links:

The Rotary Clubs of Great Britain have made dementia a priority in their mission, and have been instrumental in supporting Memory Cafes. One club has prepared this Guide to Setting up a Memory Café.

This is a guide to Memory Cafes in Cornwall, including links to some unusual (and thoroughly British) resources for use in Memory Cafes.

This is Devon’s factsheet on Memory Cafes.

I particularly like this brief piece from Cornwall, which includes quotes and pictures.

1 comment:

  1. We opened the first Alzheimer's Cafe in the US in 2008. When we first put feelers out to the community, many people suggested that we should think of some cute name, like "memory" cafe - nobody would show up if we actually named it the Alzheimer’s Café. Taking our cue from Dr.Miesen on the importance of being right up front with Alzheimer’s, precisely because it was so "scary", we decided we had to take the risk and stick with it.

    Our grand opening was a spectacular success and we’ve been going strong ever since. From day one it was confirmed that sticking with using that taboo word: Alzheimer’s was precisely the right thing to do. It’s a safe place for open conversations about living with the disease and “coming out of the closet”. Once you’re “out” you can relax and just have a good time. We reserve “serious” issues for our support groups.
    PS. I personally think the term: Memory Café is a misnomer ; it ought to be “Loss-of Memory Café” The majority of cafés in Europe likewise follow Dr.Miesen’s philosophy and have named their cafés “Alzheimer’s Café.” As a matter of fact, the Brits have registered their trademark as “Alzheimer Café.”

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