Have you confronted Alzheimer’s disease in person? Then you know it’s not simply about someone who misplaces the car keys or cannot remember the name of the movie seen last week. The loss of short-term memory is frustrating, and sometimes frightening, but Alzheimer’s is so much more.
It’s the man who wanders away from home, unable to say where he is going or from whence he came. It’s the woman who curses at loved ones and fights with those who care for her not out of malice or cause, but even worse, because she can’t comprehend a gentle touch or a kind suggestion.
It’s the husband who falls in love with another woman, while his wife watches helplessly, like a stranger. It’s the mother who does not recognize her own child.
Once you’ve seen Alzheimer’s disease up close, witnessed its cruelties and indignities, experienced the existential distance it creates among those who once were so intimate, then the next question is much more wrenching to try and answer: Do you really want to know if this disease, with no known cure, is in your future?
Until very recently, this was largely a theoretical exercise, but advances in medical science have opened a path to finding signs of Alzheimer’s before the symptoms appear. The latest news, published August 10, involves a spinal fluid test that can be 100% accurate in identifying patients with significant memory loss who are on the way to developing Alzheimer’s.
There are caveats, of course — the technology is in its early days, the tests are not reliable, the results still tentative. And it’s not yet clear that a positive test in those without symptoms reliably predicts for the development of the disease. But while scientists and physicians (and likely health insurance adjusters) daven over the details, there is a wide, intimidating space left for the rest of us to face, filled with churning dilemmas and unknown consequences.
Do I want to know if the disease is likely to settle in my brain, messing with that miraculously delicate instrument? Do I want to learn this at 50 years of age? Sixty? Seventy? What do I do with the information? Whom do I tell? Can it ever remain private?
And what does society do? If the hundreds of thousands of people expected to develop Alzheimer’s disease are not a vague, public health projection but a defined population, is our communal obligation to care for them any greater? Can we ignore them, as we largely do now, allowing only those who can afford good care to receive it and forcing individual caregivers to exhaust themselves doing the best they can with the rest?
The challenge of processing damning medical information is not confined to those with Alzheimer’s. Thanks to advances in research, for instance, women can now be tested for BRCA1 and BRCA2, the genes sometimes linked to Ashkenazi Jewish women who develop breast cancer before age 50. A positive result poses a fitful choice, of taking one’s chances or peremptorily losing one’s breasts. At least there are well-defined ways to use the information to lower the chances that breast cancer will develop.
But the stigma of a neurological disease like Alzheimer’s, with its upsetting behavior patterns and self-destructive tendencies, poses even more fitful choices. One dark blessing of Alzheimer’s is that, past a certain stage, the person with the disease can be oblivious to what is going on. A diagnosis when one is sentient erases that benefit.
All that said, these latest medical advances must be welcomed and applauded, because they pave the way to a deeper understanding of the disease and, it is hoped, to treatment that can cure or curtail its progress. But this comes with a tremendous responsibility and challenge, framed by a question first posed in the Garden of Eden: What is the price of knowledge?