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Alzheimer's Clinical Trials - One Disappointment after Another
LETTER TO THE EDITOR

Results that I have read, and reports that I have received from people who attended the semi-annual world international conference on Alzheimer's Research confirmed for me that I can still make sound decisions based on my own thoughts and feelings.

Good news for me; sad, confusing, and misleading news for all of us who live in cognitive decline. The eternal optimists, the career researchers, the public relations specialists (all of whom I remain confident are well intended) see failure after failure as positive progress. The cheerleaders of various theories of what causes Alzheimer's disease "spin" the disappointing results. In addition, the drug companies continue trails on drugs that promise more than they have delivered in previous trials.

It is not fair to people who have dementia; it is not fair to caregivers. It is just not right to continue inflating this bubble of hope - that we are getting closer and closer to a cure, to a world without Alzheimer's; that we are so close we should spend much more money to get their faster. That we are so close to having the progress of our symptoms slowed, stopped, perhaps even reversed.

No one claims to know for sure what causes our symptoms, why some have some symptoms sooner or later, why some have more symptoms than others, or why some symptoms advance at difference rates. Yet, so many talk and act as if these are all known, and then turn to their attention and our hopes to pills to fix us.

I now know for sure why I did not go to Chicago to this conference. It is bad enough reading about what was said, how it was said, what was ignored, what was emphasized, and what was not. For me, it would have been far worse to sit there and listen to it.

I too still harbor some deep, flickering hope that I want them to be right. I want to live in a world without Alzheimer's. I want to be cured. I want my symptoms to be slowed, diminished, and stopped in their tracks. A large part of my remaining cognitive ability knows this is not going to happen. A small part of my spirit still hopes I am wrong.

Richard Taylor