In following the New York Times Health feeds this weekend, I was directed to an article that was actually published three years ago, yet it could have been printed today. In fact, the same author is running a series currently on the disorder, called “The Vanishing Mind”.
This particular article from ’07 (http://health.nytimes.com/ref/health/healthguide/esn-alzheimers-ess.html) got me going a bit, because so little has changed. I have no problem with the opening paragraphs, which detail the lack of meaningful progress in finding effective medical treatments for Alzheimer’s. (A recent article remarked at the trend in information-sharing among formerly competitive pharmaceutical firms as evidence that they are at a loss where to go next.)
The rest of the article relates that the best available approach at present is simply to “go with the flow”. On the surface, this would tend to validate an experiential approach to dementia. But there’s a difference in what is said and how it is said.
The tone of the article suggested a view of this approach which oversimplifies and underestimates the technique, and therefore comes across as rather derisive in defining it: “If Dad wants to polish off the duck sauce in a Chinese restaurant like it’s a bowl of soup, why not?” The most telling judgment is that this approach is “a tacit admission of defeat”.
But there is a big difference between simply humoring Dad and engaging him in a way that enables him to find well-being. The reason this article–and so many others–do not see this is that they continue to observe people living with dementia from a declinist perspective. This perspective views the person from the standpoint of brain disease, and therefore can only see his actions as purposeless and confused.
Truly “going with the flow” is not nearly as passive as it sounds. One can utilize the currents to navigate tricky rapids, or simply drift aimlessly and bounce off the rocks. The result will be hugely different, depending on your choice.
The biggest fault of our care system is its inability to see the small moments of interaction and the power they contain. This is the essence of Nancy Pearce’s wonderful book, Inside Alzheimer’s (c.2007, Forrason Press), which is currently going into its second printing. (I highly recommend this book, and if you can wait a few months for the Second Edition, you’ll get updated resources and a foreword by me to boot!).
One example of how we need to view our interactions from a more non-judgmental viewpoint is captured in Pearce’s brilliant observation about pity: “…you cannot be effective if you only look at a person and see the tragedy, the horror, the sadness…Pity’s only function is to keep you in a sad place and the person with dementia beyond reach.”
So going with the flow is far more than simply biding our time until the magic pill appears. For the foreseeable future it IS the magic pill.