Alzheimer’s: would you want to know?

Alzheimer's: would you want to know?

On the good days, she could remember my name. Other days I was Tom, her son she hadn’t seen in years, and other days she didn’t know me at all. On the good days, she knew where she was, and talked with me, my mother and my little brother. On the bad days, she would weep and her Eastern European nurse would kindly usher us out of the room, smiling sadly.

Alzheimer’s ate my grandmother alive. Bit by bit, the woman I had known receded, replaced by a different person who could do little but stare out at the world with glassy-eyed, childlike confusion. It was strange, but she was old and it was understood that this was simply a facet of the aging process, albeit a dark one.

It never occurred to me that, decades earlier, she might have had some premonition of what was to come. Perhaps she had seen her own parents go down a similar path. Perhaps not. Perhaps it had come upon her with the swiftness of nightfall, as her memories faded and she had no time to feel the terror of encroaching darkness.

On April 6, 2012, the FDA approved an early-detection tool developed by the pharmaceutical company Eli Lily, that will be able to test for Alzheimer’s disease, indicating plaques in the brains of patients who seem to be exhibiting early signs of the disease. The process works by tagging certain proteins, whose presence might indicate Alzheimer’s, with a radioactive dye called florbetapir F 18, which can then be detected in positron emission tomography scans.

The question that occurs then is: would you want to know?

For some, early detection offers a host of complications. In some cases, patients whose diagnoses have been confirmed have experienced severe depression and anxiety while remaining entirely asymptomatic. Others argue, given that no cure for Alzheimer’s exists, knowledge of one’s own prognosis does little for the patient in question.

In my own case, I can say with some certainty that I would want to know.

It is no simple or easy thing to know of your own coming decline, but I would rather have some warning than to be suddenly overtaken by this debilitating disease. Then, at least, knowing that your days of complete cognition are numbered,  you might put some value on the “good” days you have.

Perhaps  if more of the population was made aware of their impending fates, there might be more support for pharmaceutical companies to find a definitive treatment for this disease. With prior knowledge, one might be able to stave off the eventual decline by prioritizing a healthy lifestyle and taking supplements like folic acid, fish oil and vitamin B12, known to help decrease the chances of developing Alzheimer’s.

Finally, I would hope that if any loved one of mine were at risk for developing this awful ailment, they might confirm it through this test. I would hope that—though this knowledge might weigh heavily on them— it would allow them to treasure the time they have left, and inspire me to place the same value on my time. And perhaps that it might allow them the opportunity — or even inspire them — to engage in preventative measures.