When Dr. Peter Whitehouse of Case Western Reserve University says we should redirect Alzheimer’s funding to emphasize care over “cure,” the idea isn’t very popular (see previous two posts). But he’s not really suggesting we should stop funding research – it’s just that he doesn’t like how that research is presented to the public. “I’m not saying we don’t need bio research,” he explains. “But using the word “cure” is irresponsible.”
“I’m more of a psycholinguist than a physician, so I’m interested in words,” he continues. “In the discourse about Alzheimer’s, our field needs to be more honest. It’s unlikely we’ll fix the problem in the sense of a cure. Care is more complicated to appreciate than finding a drug that blocks pathways, and it involves ethical and cultural implications. It’s easy to say ‘give me half a billion dollars to find a cure,’ but asking for half a billon for better long term care is more difficult. But we keep saying ‘give us more money to find a cure.’ This is a fantasy – people are starting to realize the emperor has no clothes.”
Looking back, I think my dream of finding a cure for Dad really was a fantasy. I kept reading that we were making great progress towards a cure for Alzheimer’s, but the reality was that my father’s doctors were unsure why he had dementia, and unsure what to do about it.
This is part of the massive information disconnect surrounding Alzheimer’s and dementia, and a source of anger for many persons with dementia and their families. I think most of us dealing with dementia can understand the kind of complexity Dr. Whitehouse talks about. We will continue to support both research and care efforts even when the hype about a cure is replaced by careful discussion about how we should view and treat dementia.
“It’s our obligation to think through what “Alzheimer’s” is and how to address it,” Dr. Whitehouse says.