Identifying Alzheimer’s Disease prior to disease onset

I am happy to see that progress is being made in identifying better ways to diagnose Alzheimer’s disease. On the other hand, I am also disturbed given the nature of getting a diagnosis like Alzheimer’s disease. The epidemiologist and researcher in me is always glad for a discovery like this. In designing studies we have a valuable way to identify people with an abnormality indicative of the disease. This improves the features of the study and its measure of identification of this disease. There is immense value in that. In studies where we can only approximate the outcome (i.e. in AD definitive diagnosis is usually only available by autopsy) our research is negatively impacted in looking for treatments or a cure for the disease. If a group of patients we ‘think’ have AD really do not, and we seek treatments based on their responses or physiology, then the potential for error in these studies is large. So for research in AD this is a huge finding… and very important to progress in the field.

Here is the link to the NYT article that reviews the study to be published today in Archives of Neurology… I’ll have to review the study later to evaluate it. http://www.nytimes.com/2010/08/10/health/research/10spinal.html?_r=1&th&emc=th

The question I’m left with really is… what do we do with the information once we have it? The article is a bit vague… implying maybe the doctor doesn’t tell the patient of the diagnosis. That is scary and a little like getting cancer more than 30 years ago… You could be dying in a hospital bed and no one would tell you the diagnosis.

With AD, we really don’t have ways to change the outcome. Do we want to be diagnosing people with Alzheimer’s earlier? If there was a real way to change the progression then there is no question… of course! But today, if I had the test, would I want to know the results? It is hard to say. Part of me says I could plan for the changes to come… I could mourn my loss of my ‘senior’ years… I could prepare my family for the worst… But these would be extremely difficult to do, even for the healthiest of us.

Would you want the test?