Communion Of Dreams

Why do it, then?
April 20, 2011, 12:30 pm
Filed under: Alzheimer's, Government, Health, Machado-Joseph, NPR, Science

The National Institute on Aging has come up with new research guidelines and two new clinical diagnosis relating to Alzheimer’s. From the NIA news release:

For the first time in 27 years, clinical diagnostic criteria for Alzheimer’s disease dementia have been revised, and research guidelines for earlier stages of the disease have been characterized to reflect a deeper understanding of the disorder. The National Institute on Aging/Alzheimer’s Association Diagnostic Guidelines for Alzheimer’s Disease outline some new approaches for clinicians and provide scientists with more advanced guidelines for moving forward with research on diagnosis and treatments. They mark a major change in how experts think about and study Alzheimer’s disease. Development of the new guidelines was led by the National Institutes of Health and the Alzheimer’s Association.

From NPR coverage of the news:

The new definitions, which were just published online by the journal Alzheimer’s & Dementia, acknowledge this dimly understood early phase of Alzheimer’s. Now there are two new pre-dementia phases: mild cognitive impairment and “preclinical Alzheimer’s.”

In mild cognitive impairment, a person’s changes in thinking are noticeable to himself, friends, or family. They would show up on tests of memory and recall, but don’t interfere with everyday activities. Alzheimer’s is just one possible cause. Because there are no treatments to prevent or stop Alzheimer’s, many people may not consider this diagnosis a blessing.

The second new phase, preclinical Alzheimer’s, is much squishier. There’s no list of symptoms that a doctor can whip out to say you’ve got it. Rather, the goal in creating this category is to see if scientists can define when the disease starts, and track it through biomarker tests, brain imaging, or other yet-to-be-invented tests. If that happens, it might someday lead to ways to prevent Alzheimer’s. But for now this category is useful only to researchers.

As I noted four years ago, I have faced the question of whether to be tested for a disease I may have, but for which there is very little in terms of treatment options (and no cure). From that blog post:

It is a very difficult decision to be tested for a genetic disease which you may have, and for which there is no known treatment (let alone a cure). If you test positive, you know exactly the sort of future you face. And, if you test positive, it can have a significant impact on your employment and insurance possibilities, even decades before you might experience any onset of symptoms.

There is a similar disease which runs in my family called Machado-Joseph. In terms of statistics, there is about a 68% chance that I carry the gene for it, though I do not have the other familial characteristics which seem to track with the disease. So I have elected not to be tested. Besides, at nearly 50 years of age, if I did have the onset of the disease, it would be likely that it would progress so slowly that I would die of something else (the younger the age of onset, the more rapidly the disease progresses).

That said, I have told my sister (who has the disease) that if her doctor wants to do the genetic test on me in order to have that additional bit of information, I would do so.

And I suppose that is where I come down on the issue of whether or not to do any of the new testing for Alzheimer’s: if it will help science better understand this disease, how it develops, and to chart possible treatments, I would participate. It may not be something I could benefit from myself, but I have to look at the bigger picture. I think we all do.

Jim Downey

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