Being dealt the initial blow of an Alzheimer's diagnosis is bad enough. Then comes the secondary trauma from having to face the stigma attached to the illness. During a series of nationwide town hall meetings with people with early stage dementia, the Alzheimer's Association found:
Negative associations with Alzheimer‟s disease are shown to have a direct impact on the relationships between people with the disease and most everyone with whom they come into contact. People described the change in interactions that occur with their family and friends, colleagues and co-workers, as well as with the medical community . . . Many people reported a hesitation in admitting they had Alzheimer's disease for fear of negative public perceptions about the disease and its potential for causing social isolation . . .
Richard Taylor says it best:
Most of the research efforts and literature on Alzheimer's, even from best intentioned sources, focus on the loss of brain functioning and best strategies to handle problematic behaviors. I find it very telling that interpretations of Alzheimer's brain scans always point to the areas that are being negatively affected by the illness. Try to find out what is left that is still functioning in the Alzheimer's brain, and you are in for a frustrating search. Such negativity can be traced back to the etymology of the word dementia itself: from Latin 'demens', de (out of) mens (mind).
This strikes me as a case of distorted collective thinking, worth examining. Obviously, Alzheimer's is hitting a sensitive nerve not just in the individuals who are directly affected by the disease, but also in our whole society, notably the medical and scientific community. Alzheimer's threatens our sense of selfhood and to protect ourselves, we distance ourselves from those afflicted by it.
Alzheimer's also acts as a magnifying mirror for all our contemporary dysfunctions. The disease demands that we no longer do, and dwell in being instead. It requires that we be patient, and that we do not rush. It leaves us with those personal gifts we value the least, such as creativity, simple sensory experiences, and just plain love. It gets in the way of our drive for efficiency. It tosses aside our precarious sense of self, and demands that we reinvent ourselves moment to moment. It confronts us with the reality of death, slowly, relentlessly. It challenges our insistence on independence and forces us to rely on a community of care. It pushes us to explore our spiritual vacuum.
Knowing this, we have a choice. We can decide to turn towards those afflicted with Alzheimer's and approach them as one would a welcome teacher. Or we can continue to turn the other way. The first option, while not easy, may be the only one worth taking, in the long run. Maybe we can follow Olivia Ames Hoblitzelle's lead?
"We live, unwittingly, in a world of assumptions: that people will make sense; that they will do certain things; that we agree about time and place; that we can understand and be understood. But when all that unravels, where are we? My answer for Hob and me would be that we lived in an open, shifting, spacious reality where everything was undefined and totally unpredictable. "Wasn't that the way reality is anyway?" you ask. No, this felt quite different. This was a totally new experience. When I was rested and in balance, it was compelling, even exciting because it was so alive and immediate, a perpetual wake-up call to live wholeheartedly in the moment. Meanwhile, it came to me as a revelation that amidst all the losses, the essence of this man I loved was still very much present. Sometimes my own preoccupations obscured my seeing, but astonishingly there he would be the wholesome of his spirit shining through his acuity, his sensitivity, his playfulness and humor all intact."
Olivia is the author of The Majesty of Your Loving: A Couple's Journey Through Alzheimer's.
What does Alzheimer's bring up for you?
Follow Marguerite Manteau-Rao on Twitter: www.twitter.com/MindDeep
http://movinginwithdementia.blogspot.com/
Thank you for this article and helping to end the bias.
My modest contribution currently is to offer counseling to families, and also to develop a mindfulness-based dementia care workshop that will gift caregivers with a practice they can take with them on a day to day basis. Of course, this is only a small part of the equation. As you point out in your article, there are huge needs that need to be met in terms of respite care. The problem of interrupted nights and lack of sleep can bring down, as young mothers know so well!
Big problems, and only beginning of some solutions.
Thanks again.
Are Alzheimer's Caregivers the Forgotten?
http://www.alzheimersreadingroom.com/2009/04/are-alzheimers-caregivers-forgotten.html