I was surprised and, at the same time, very sad. This is something that could happen to any of us, and yet we are at such a primitive state of research.
--Dr. Martha L. Daviglus, Professor or Preventive Medicine at Northwestern University
According to an article in today's NYTimes, the National Institutes of Health recently sponsored what amounted to a science court in order to answer one question about Alzheimer's: Is there any way to prevent Alzheimer's? The jury was commissioned to hear all the research evidence about the dread disease. They heard from leading researchers from major institutions around the country. They looked at hundreds of research papers. The studies included nearly every proposal to prevent the disease: exercise, mental stimulation, healthy diet, nutritional supplements, etc. The research presented even included differences in personality traits. The jury concluded that there was no significant research indicating the possibility of Alzheimer's prevention. Thus the comment by Dr. Daviglus.
Still, though there is a vast literature on the disease, the quality of research evidence is very low. Since I've intereacted with leading specialists in the field from the University of Minnesota Med School as well as Mayo Clinic, I'm not at all surprised by the court's conclusion.
To me, one of the suprising insights was that it was not until the mid '80's that scientists realized that Alzheimer's was actually a disease. It was thought to be dementia that was merely a normal part of aging. Of course, the demographics of the boomer generation and the potential for a huge proportion of the population to live much longer, make the disease a high priority.
As my regular readers know, my beloved wife is now in long-term care with Alzheimer's. One of the intriguing facts about the disease is the discomfort so many have in talking about it. But when I broach the subject, then people open up. To some, it's a terrorizing disease. Prior to learning of her mother's diagnosis, my eldest daughter began working part time in development for an Alzheimer's research funding organization in the Boston community. She told me that when she wrote about her mother's diagnosis in a publicity letter for the organization, people started "coming out of the woodworks." They wanted to talk with her because of her knowledge-base, to share their family stories and to learn more about the disease and the research. Recently in a conversation with our youngest daughter, I thought her response, though I might not use the cliche, was most appropriate. In discussing our pain, her comment was . . . well, prosaic: It is what it is, Dad. I'd put it differently. I'd say that to life lived to its fullest has both its credits and its debits.
In February, I wrote a blog on our experience with the disease and my own reflections and commitments. Although I took what many saw as a unique position on the experience, I've been shocked by the size of the response. And no, I haven't changed my attitude toward the disease and life. Here's the posting: My wife's Alzheimer's, The Notebook and my humanity.