Except in autopsy, there has never been a way to diagnose Alzheimer's disease – until now. Last week, the U.S. Food and Drug Administration gave tentative approval to a new screening for early detection in living persons of the unique plaques that define Alzheimer's.
The test, involving a PET scan that uses a dye to make the plaques visible, is relatively inexpensive. The FDA approval is contingent on radiologists and physicians being trained in how to read the scans to help avoid false positives – something that can be done, according to the CEO of the company that developed the dye, in months not years.
A senior director at the Alzheimer's Association expects the test to be available before the end of this year.
In a New York Times story earlier this week, Dr. Norman Foster, a professor of neurology at the University of Utah, discussed a patient with a memory deficit who could have benefited from the test:
“I wish I had had the ability to do an amyloid PET scan to allow an earlier diagnosis,” Dr. Foster said. Approval of the scan, he said, “would be a historic advance in neurology and in the daily management of patients with memory complaints.”
Nothing this big comes along without new, difficult and disturbing questions. In an online video from The Picker Report, the TGB Geriatrician, Dr. Bill Thomas, and dementia expert Dr. Al Power, also a geriatrician, took a whack a some of them.
Long-term care insurance has always been unaffordable for many people and this test, as the doctors note, makes that worse, although it will be interesting to see how the new health care law, which no longer allows denial of coverage for pre-existing conditions, will be applied in this case.
And, there are workplace issues; would people be denied employment if their Alzheimer's test were positive?
The biggest personal question the two doctors discuss briefly is, of course – would you want to know, when you are still cognitively healthy, that you have the plaques identified with Alzheimer's, particularly since there is no treatment.
Practically, it makes sense. People can plan ahead and they might use their time - which could be many years still - differently than if they didn't know. But it could also be detrimental leading to depression and other life difficulties.
I've given this a great deal of thought in the past few days. If the scan showed no plaques, I'm home free and I wouldn't wonder every time I forget someone's name if I'm entering the early stages of Alzheimer's.
If the test were positive, however, I know I would monitor myself for every minor bit of forgetfulness. How far gone am I? Is my memory loss serious yet? How do I know I'm forgetting things if I don't remember what I once knew?
Is this something I want to discuss with anyone beyond my physician? Do I tell relatives? Friends? If so, when? Who decides when I am no longer capable? My physician? My health care proxy?
Because I live in Oregon which has a Death with Dignity law, would I want to take advantage of that before my mind is an empty shell? But if my brain is heading south, how would I know when I've hit the tipping point, so to speak? Obviously, one can make an informed decision to choose to die only when one's mind is coherent, so there are legal questions too.
It is difficult to work out and there are no precedents yet, no guides from others' experience.
But at my age, nearly 70, I've tentatively come down on the side of wanting to know, although I won't be first in line when the test becomes available. I'm certain there are ramifications that haven't occurred to me yet.
(I think it is an even tougher question for people who are a good deal younger than I am. Would you want to know 20 or 30 or 40 years before the disease begins to be evident? I'm glad I'm too old to confront that.)
Most of the people reading this blog are, like me, older than 50. So the question today is: do you, at your age now, want to know if your brain shows the Alzheimer's plaques? And will you have the test when it becomes available?
This is not a question that can be tossed off easily like what to have for dessert and you may not have an answer today. But I think it is useful for all of us to begin the conversation.
At The Elder Storytelling Place today, Lyn Burnstine: That White Stuff