+Alzheimer's Reading Room
"What do you do with these people once you diagnose them -- apart from frighten them?" asks Mark SmithI decided to email Mark to get a better understanding of his position on Alzheimer's testing. He was kind enough to reply (below). Thank you for taking the time to respond, Mark.
Mark Smith has devoted 20 years of his life to Alzheimer's. He is Editor-in-Chief, Journal of Alzheimer’s Disease, and an Executive Director of the American Aging Association.
My apologies for the delay in responding to your letter as well as your posting to the Forbes article. While I realize that testing is somewhat of a personal choice and may offer assurance of a diagnosis to some, an equal, if not greater, number of people would prefer not to know or at least not to know unless there is something one can do to either slow down or prevent subsequent disease development. Unfortunately, at this point, we can do nothing to prevent individuals with a diagnosis of mild cognitive impairment (the precursor to AD) from progressing to AD. The question then becomes what is the value of knowing at an earlier time, perhaps even before any memory problems are apparent. In my opinion, this will vary depending on an individual's personality. However, I think most would prefer not to know since there is already a genetic test that will predict your percent change of developing AD; it isn't popular and is mainly used to confirm a clinical diagnosis (based on behavioral symptoms).
The analogy to HIV is, in my opinion, a poor one since the #1 reason for initially knowing one's HIV status (i.e., pre-good drugs) was so not to spread the disease and only later, when there was a treatment, did testing became really popular. A better analogy would be Huntington's corea - see Nancy Wexler story (she never got the test: http://www.npr.org/templates/story/story.php?storyId=1897199 .
Having said all of the above, scientifically, it would seem easier to prevent a disease than to cure a disease. So early diagnosis does have a place. however, I do not think there will be many takers (like the ApoE genetic test already available) until there is some "proven" and effective treatment strategy.
I hope this explains my remarks. You are welcome to post this response on your website.
On a personal note, I applaud your advocacy and spirit in fighting a disease that has touched you and your family. It is a horrible disease and one which I have dedicated my life to solving and curing. I am quietly optimistic for the future but am tired of scientists hyping a cure within the next five years. I have heard that line for 20 years!
Mark A. Smith, Ph.D., Professor of Pathology
Wolstein Research Building, Room 5125, Department of Pathology
Case Western Reserve University
2103 Cornell Road, Cleveland, Ohio 44106
Tel: 216-368-3670; Fax: 216-368-8964;
Executive Director, American Aging Association
Editor-in-Chief, Journal of Alzheimer’s Disease
- What is the Difference Between Alzheimer’s and Dementia
- Test Your Memory for Alzheimer's (5 Best Tests)
- Is Alzheimer's World an Irrational Place?
- Communicating in Alzheimer's World
- Alzheimer's, Your Brain, and Adaptability
- The Seven Stages of Alzheimer's
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