Nov 15, 2012

A Reminder: Why We Need Memory Cafes

Memory Cafes are, first and foremost, a setting in which persons with memory loss can share fun and laughter with their care partners and friends in a setting free from awkwardness and stigma.

By John T. McFadden

Why We Need Memory Cafes

This morning I got a call from my friend Ruth, who works in one of our Goodwill stores. Like many Goodwill folks, she also works a second job, spending two days each week in a hair salon with an older customer base. She has told a number of her customers about our book, resulting in a purchase or two. If I can get a few more hairdressers marketing for us, we may wind up with a best-seller.

Ruth was at the hair salon, and handed her phone to a customer whose husband appears to be moving rapidly into dementia. The woman is getting no sleep because he is prone to wander at night. Their family physician referred them to the Alzheimer’s Center of Excellence six weeks ago, and of course they are still waiting for an appointment. I did not have the heart to tell her that they will likely be waiting a good while longer for an evaluation, given how overtaxed the Center is these days.

I asked her if she had called the Alzheimer’s Association. She attended one of their presentations several months ago and filled out a “please contact me” card, but never heard from them.

This is not surprising: local chapters of the Alzheimer’s Association are covering larger territories with smaller staffs as the national organization directs more time and money to advocacy and less to service.

I urged her to call the local chapter and tell them that she is at the end of her coping resources and needs immediate support and assistance. I hope that they hear her urgency and exhaustion, and that someone can make the time to work with her on a strategy to at least make life workable until her husband’s evaluation.

Multiply this woman by at least 500 in our local area alone. Resources are inadequate to meet existing needs, and those needs will grow exponentially in the coming years. I urge readers to support their local Alzheimer’s Association. I also urge them to attend medical school and become geriatric psychiatrists, although I am not optimistic on that one.

A part of the answer must be more and better front-line resources where people can learn about progressive memory loss and about where and how to seek assistance and support. The need to be knowledgeable about dementia is not limited to physicians. We all need to become knowledgeable and this includes pharmacists, dentists, hairdressers, cashiers, bank tellers, bartenders—all those who regularly interact with older persons.

And, of course, we need Memory Cafes in every community, just as there now are throughout Great Britain. Susan and I will be spending time in England next month visiting Memory Cafes, learning what makes them so extraordinarily successful. When we return we will begin to develop a program that we dare to hope can serve as a national model. We believe our city offers an ideal setting because of a tight cluster of resources in a six-block area downtown – two possible settings for the actual Cafes (one a non-profit coffee shop run by Goodwill that is warm and cozy, the other a senior center that would provide a better setting for those who need brighter light and less bustle)—and a number of museums, art studios, the YMCA, etc. with whom to collaborate both on bringing creative activities into the Cafes and providing opportunities for outings and events. There will be much preparation to do before the Cafes can open—recruiting and training volunteers, collaborating with a wide range of service providers, etc.

Memory Cafes are, first and foremost, a setting in which persons with memory loss can share fun and laughter with their care partners and friends in a setting free from awkwardness and stigma. But they are also a setting where accurate information about resources is available and relationships with persons in similar circumstances are formed. And they are a vehicle for bringing dementia “out of the closet” and into the heart of community. The call from Ruth, my hairdresser friend, is one more reminder of how badly they are needed.

Aging Together: Dementia, Friendship, and Flourishing Communities
Aging Together:
Dementia, Friendship, and Flourishing Communities

John T. McFadden is an ordained minister of the United Church of Christ who served in parish ministry for 34 years. John served as volunteer chaplain for two years at an extended care facility, with a particular focus on pastoral presence to persons with advanced dementia. He is currently the workplace chaplain for Goodwill Industries of North Central Wisconsin. He and his wife, Dr. Susan H. McFadden, are co-authors of Aging Together: Dementia, Friendship and Flourishing Communities (Johns Hopkins University Press 2011)

Original content John T. McFadden, the Alzheimer's Reading Room