Testing for Alzheimer’s Disease: Do you want to know?

January 25, 2011

The following is an article written by Dementia Dynamics Co-Founder and Medical Director, Daniel C. Potts, M.D., for the American Academy of Neurology’s online caregiver website (http://patients.aan.com/news/?event=read&article_id=9245), for which he is one of the editors.

Alzheimer’s disease has been called the greatest healthcare challenge of this century, with over 5 million Americans currently carrying the diagnosis.  An estimated 10 million of the baby-boomer generation will develop the disease, creating a medical “juggernaut” which may bankrupt our healthcare system as it wreaks havoc on patients, families, communities and care givers.

Those of us who have affected relatives 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.  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 this 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 a patient specifically requests it, I try to discuss all the ramifications I can think of, 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.

What do you think?  Do you want to know if you may have the laboratory or genetic markers for Alzheimer’s disease when there is no effective treatment or prevention? Would you want your doctor to know and not tell you?  Tell us your story and share your thoughts.

American Academy of Neurology online caregiver community – one of the editors

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One Response to “Testing for Alzheimer’s Disease: Do you want to know?”

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