Friday, August 27, 2010
Can we just talk? That would seem to be the critical lesson behind what may be the biggest breakthrough in awhile in Alzheimer’s research. The New York Times recently reported that scientists and executive from nonprofit groups, universities, drug and medica...
Hello, so after 30 years of thousands of researchers each trying to find the cure for alzheimer's, some researchers have decided to talk to each other. Is this cause to dance in the streets? Not so fast. You don't even have to read inbetween the lines to see the gaps in knowledge that make this package seem so doable. The more we know about dementia, the more we seem to know we don't know. Yes, there are "things" (they call them bio markers) floating around in the spinal fluid of folks deep into the symptoms of dementia that aren't necessarily floating around in the spinal fluid of folks without the symptoms. However we already now know there are folks with brains that end up looking like they had dementia when in fact they had no symptoms. The gold standard is now tarnished to say the least.
Pre clinical diagnosis assumes we are now making sound clinical diagnoses, which we aren't. We don't know what we know means. We just know it. Until we know the state of the human brain the second before the big bang of dementia starts, and then we know what is different the moment after the big bang we are, they are guessing. Educated guesses, expensive guesses to say the least. All of these guesses have thus far produced no results - no pills, not therapies, no aromas, no chants that systematically slow down the progression of the symptoms, stop them, or cure them.
The cart is so far ahead of the horses when it comes to research and translational research on dementia that it is a diservice to those living with it and those living with someone who is living with it to "hype" what the NYTimes did in this article. Shame on them for not balancing these cheer leaders with other non-involved observers. Shame on them for swallowing the ends when the means are so unclear. They should be especially careful when they know that those who read their words are so hungry to feed their hopes that tomorrow will be better than today for them because of research and drugs. What about today? Isn't that all we all have? It's all well and fine to plan for tomorrow when we have something more than words, conferences, more money, well intended smart people, and a few press releases upon which to base the plans.
Let's stay in today.
Richard
You've got some great points, Richard. There was a recent study that showed encouraging results when people with Alzheimer's were helped to achieve goals - just like anyone else! Pounding that information into people's heads is vital for the here and now. Thanks as always for your input.
Carol