Saturday, January 29, 2011

Can Humor about Dementia be Healthy?

A primary goal of our book is to challenge the destructive stereotypes about Alzheimer's disease and other forms of progressive memory loss that create fear, anxiety and stigma. So what, then, are we to make of the humor, often uncomfortable and slightly mean-spirited, about dementia (of the "you get to meet so many new people!" type) born of that fear? Often I wince. And yet making fun of the things we fear in order to put them into proper perspective is a human coping mechanism that begins in early childhood - Bram Stoker's fearsome Count Dracula becomes The Count on Sesame Street - and continues throughout our entire lives.

This raises the interesting question of whether aging Baby Boomers, living with ongoing anxiety over the possibility that they, or those they love, will journey into dementia, can find healthy ways to give honest expression to that anxiety through humor. This song by Pam Peterson elicited an initial wince from me, but because it is clever and very funny I watched all of it. Now I find myself thinking that this may be the sort of healthy, honest "name the anxiety but do not allow yourself to be ruled by it" humor that can ultimately reduce stigma and help us live what Joseph de Rivera (whose work we explore extensively in the book) terms "fear subordinated to love." It can also serve to reinforce the truth that changes in memory affect all persons as they age, perhaps making us less likely to embrace the exaggerated dichotomy that too often isolates those contending with dementia. Watch this video and let me know what you think.

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.

Tuesday, January 4, 2011

The Semantics of Dementia

Susan and I have had many conversations about what we do and do not wish when death comes to one of us. Should that death come as a result of cancer, we both agree, the surviving spouse is not allowed to include the phrase “after a courageous battle with cancer” in the obituary. It is bad enough to have terminal cancer, and I would prefer not to have the social requirement to be “courageous” about it added to the burden. But I object even more strenuously to the word “battle,” yet another example of how we use the language of warfare to take about disease. We declare “war” on diseases, we “hit them with the heavy artillery,” we are committed to “conquering” every condition that hastens the mortality we wish to deny altogether. If you do not choose to “battle” your disease with courage, you are labeled a failure at having cancer.

Daniel R. George has written an important essay for The Lancet titledOvercoming the social death of dementia through language." He argues that “Guided by the language of warfare, we have come to view people with dementia as ‘victims’ who are ravaged by a singular marauding disease. Alzheimer’s disease is personified as a ‘mind-robber’ that ‘attacks’ or ‘strikes’ the brains of individuals…” Such language, he insists, demonizes the very aging process itself, a process that will bring cognitive changes to virtually all of us.

He challenges other words associated with dementia, including the prevalence of the word “burden” in describing not only the toll on caregivers, but upon wider society. “Burden” multiplied by the demographics of aging baby-boomers quickly gets us to the language of “crisis,” feeding the engines of fear and guilt (for “being a burden” is the ultimate sin in a consumer society which assigns value to persons almost exclusively upon the basis of their productivity).

Add more terms to the list. Dementia is a kind of “living death” that takes away the person and leaves only a “shell” behind. Dr. Richard Taylor wryly observes that “My dementia did not turn me into a turtle!”

The language we use to describe the changing circumstances of our life matter. When we declare “war!” on AD, we have established an unobtainable goal unless we are prepared to vanquish aging and death itself. I am fine with goals that include words like “delay” or “mitigate,” worthy goals that may one day be attainable.

But above all we need to eliminate the language of “victim” in describing persons with dementia, for a victim is someone to be pitied rather than enjoyed and appreciated. George notes that the Intergenerational School employs the word “mentor.” I would be happy with most any terms which suggest that the person with dementia is still among us, with his or her personhood intact even if changed. Personhood, after all, is always defined by both continuity and change. Perhaps “elder” is as good a word as any, for we will all become elders whose cognitive condition will change as we journey into late life. If we sort elders into two rigid categories, the “victims” and the “survivors,” we have created losers and winners in the contest of “aging well.” Life is neither a contest nor a war. It is a tapestry of relationships that will continue to be woven so long as we have life and breath.