PERSONAL NOTE: Late yesterday afternoon, my laptop crashed and could not be fixed with support via phone. It's been shipped off to a repair center far away and I'm working on an ancient machine now.
I have a backup that I'll try to restore today onto this machine but even if that succeeds, it is five days out of date. So, to anyone I owe an email or if we've recently made an appointment, please let me know. At my age, if it's not written down, it doesn't happen.
Most important, if you have sent a story for The Elder Storytelling Place in the past seven days, it is fried, gone with the hard drive in my broken laptop. So please resend.
Earlier this month it was announced that there is a new test, a brain scan that for the first time can detect Alzheimer's disease long before there are symptoms – decades even.
”The scans show plaques in the brain — barnaclelike clumps of protein, beta amyloid — that, together with dementia, are the defining feature of Alzheimer’s disease,” reports The New York Times.
“Those who have dementia but do not have excessive plaques do not have Alzheimer’s. It is no longer necessary to wait until the person dies and has an autopsy to learn if the brain was studded with plaques.”
The test, which began being used in June is available at 300 hospitals and imaging centers in the U.S. However, it is expensive – several thousand dollars - and so far, private health coverage and Medicare do not cover it.
The Food and Drug Administration is being careful about the possibility of misdiagnosis with the new test. The agency requires that physicians show they can accurately read the scans before doing them. So far about 700 doctors qualify.
There is, as you undoubtedly know, no treatment for Alzheimer's.
Having followed The Times reporter, Gina Kolata, for many years, I have great respect for her work. However, a goodly number of commenters on this story take issue with her. They say, in general, that the test has various degrees of accuracy. Of course, there is no way to determine if they know what they're talking about or, as with the reporter, a way to contact them.
But whatever you believe about the story, it raises a serious question: would you want to be tested?
”...getting one comes with serious risks. While federal law prevents insurers and employers from discriminating based on genetic tests, it does not apply to scans. People with brain plaques can be denied long-term care insurance.”
That's the practical issue and it's no small thing. Here is a different kind of consideration: what if you were tested at age 30 or 40 and told that down the road, perhaps many years in the future, you would develop Alzheimer's. Or even if you were tested now at a later age? Would you want to know if the result were positive?
With this test breakthrough, the accuracy will undoubtedly be upheld or improved in time. Costs will come down and one way or another, the test will become more affordable.
That stuff is certain. Treatment is not. If you had asked me (or, probably, anyone else) 50 years ago if cancer would have been cured by now, I would have bet money that it would.
So treatment can't be counted on and if your result came back positive, no one would be able to determine the onset or progression of the disease.
Now I'll turn it over to you: given all the above, would you want the Alzheimer's disease test?
I screwed up yesterday and Thursday's story was not posted or sent out until late in the day so I'm reposting. At The Elder Storytelling Place today, Marcy Belson: How to Look for Relatives