A cure for dementia will be wonderful and we hope not too far off in future, but those of us living with dementia NOW, TODAY, need to deal with it and, “to live life as we always have.”
By Elise P. Schoux
Alzheimer’s Reading Room featured an article by John T. McFadden in which he encouraged the formation of 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. 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.”
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John's point is that there are so few resources for those experiencing dementia and their caregivers. “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.” Even though my husband, Bill, and I live in the nation’s capital, we would echo that desire, particularly for those in the early stages of dementia.
When we were diagnosed with dementia of the Alzheimer’s type about 2 years ago, we were given prescriptions to Aricept and Namenda and encouraged to call our local chapter of the Alzheimer’s Association.
While that organization may have excellent chapters, ours is not one of them. We received useful glossy brochures and an extremely out-of-date and useless list of resources in our area -- support groups were closed, phone numbers disconnected, etc.
Slowly, very slowly, we explored resources in our area.
There are some great resources, but you have to find them and learn how they work. It’s an exhausting piece meal approach, which is the last thing a couple, struggling with the diagnosis and the resultant challenges, wants or needs to do. Eventually we learned about the Alzheimer’s Reading Room, which has been the single most useful source of information and inspiration to us.
Yes, I’ve deliberately written “we” and “us” in the previous paragraph because it is an effort that consumes both my husband and myself. We both live with dementia, we both seek ways to keep living our lives as we always have, and we both want to help others in this same situation. At home, we refer to ourselves as “Team Schoux.”
Inspired by John McFadden’s article, "Memory Café Meets Here Today”, we joined forces with another couple living with dementia, Bob and Carol Blackwell, and decided to form a type of Memory Café.
We found a publication by the Rotary International in the United Kingdom who has a program “Rotarian's Easing Problems with Dementia (REPoD) and a guide to organizing Memory Cafes
We then found a thoughtful forward-thinking person in Marti Bailey, Director of Sibley Senior Association and Community Health at Sibley Hospital in Washington DC. Club Memory was born.
Club Memory is an informal social organization for memory and cognitively impaired individuals and their caregivers. The Club is an “open house” model with independent activities for those seeking information, resources, and fellowship.
- Information will be available from organizations in the Washington DC area that provide support to those living with cognitive impairment.
- Those living with various forms of impairment and their caregivers will also be there to share experiences, wisdom, and joy.
- People attending are encouraged to share resources such as webpages, books, and studies that have bettered their lives.
- This is a social venue for those living with early memory and cognitive impairment. This program does not provide medical care.
Club Memory is sponsored by the Sibley Senior Association, at Sibley Hospital a Member of Johns Hopkins Medicine, in Washington DC. For more information about Club Memory, people should contact Marti Bailey- Director, Sibley Senior Association and Community Health at 202 364 7602.
While we admit that we are just getting started with Club Memory, Bob and Carol and Bill and I don’t want to stop there.
We have been encouraged to form similar Memory Cafes in other parts of our metropolitan area -- in suburban Maryland and Virginia. We hope to do so because we know that traffic and dementia don’t mix well. It would be better for people to have a Memory Café closer to home, and we are hoping to work with others to expand the number in our area.
We want to provide support and resources to those living with dementia.
A cure for dementia will be wonderful and we hope not too far off in future, but those of us living with dementia NOW, TODAY, need to deal with it and, as Bob DeMarco would say “to live life as we always have.”
We encourage others to consider organizing Memory Cafes in their local areas. Seek out medical facilities, non-profits who might be great partners for it, or just get a small group together at your local McDonalds, Dunkin Donuts, or Starbucks.
We need to have a place where people go after they’ve been diagnosed, a place where they can learn what is available, share a story or a tear, and play a game of dominos.
Bill and Elise Schoux live in Washington DC. Bill was a Foreign Service officer with US AID for 26 years. He and Elise were consultants in Democracy and Governance from 1993 until Bill’s diagnosis of dementia / Alzheimer’s disease in 2009. While the disease takes its toll, they have met some wonderful people also living with dementia, and focus on enjoying what they have not what they’ve lost.
More Insight and Advice for Caregivers
- How Alzheimer's Destroys the Brain -- Video
- Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
- What is Alzheimer's Disease?
- What is Dementia?
- What’s the Difference Between Alzheimer’s Disease and Dementia
- Communicating in Alzheimer's World
- How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
- Learning How to Communicate with Someone Suffering From Alzheimer's Disease
- Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
- Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
- About the Alzheimer's Reading Room
Original content Bob DeMarco, the Alzheimer's Reading Room