Testing for Alzheimer's Disease: Do You Want to Know?

December 22, 2010

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By Daniel C. Potts, MD
Tuscaloosa, Alabama

Those of us who have relatives with Alzheimer's disease can't help but be concerned about our risk of developing the disease. I have worried about this myself — my father died of Alzheimer's in 2007.

More and more people are finding themselves in this position. More than 5 million Americans currently carry the diagnosis and an estimated 10 million of the baby boomer generation will develop the disease.

It turns out that laboratory and radiologic tests are now available which may help to determine one's risk of developing the disease. Tests analyzing spinal fluid obtained from a lumbar puncture, specialized PET scans of the brain, and genetic testing of blood samples can shed predictive light on risks.

But, given the lack of cure or clearly effective prevention, should these tests be widely utilized? If obtained, should results be revealed to patients? Is it ethical for medical professionals to withhold them?

A recent New York Times article addresses the dilemma (Tests Detect Alzheimer's Risks, but Should Patients Be Told?). Stories of several patients are shared, and experts in neurology are quoted giving their opinions. It is a thought-provoking and informative piece, but in the end, the quandary remains.

In my practice, I have chosen to not routinely order such testing until effective treatments are available. If patients specifically request it, I try to discuss with them all the consequences of testing, in all honesty hoping to talk them out of it.

Alzheimer's disease can be diagnosed with great accuracy on clinical and imaging grounds alone without the use of potentially invasive tests. When proven-effective preventative measures are developed, then I will change my practice. Until then, in individuals who are without significant symptoms and apart from a research study, I don't plan to order the testing.

As a neurologist and the son of an Alzheimer's victim, I don't want to know my own results.