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Friday, 30 November 2012

Testing for Alzheimer's Disease

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I have a backup that I'll try to restore today onto this machine but even if that succeeds, it is five days out of date.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.


category_bug_journal2.gif 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


Posted by Ronni Bennett at 05:30 AM | Permalink | Email this post

Comments

I'll be 61 Monday, and I'd have to say I wouldn't want that test....unless perhaps I began to show serious signs of Alzheimer's. In that case, as final confirmation, yes.

I've never had much faith in some medical tests; heard of too many false results that caused stress, misery, etc only to turn out to be wrong.

No, I wouldn't want to know ahead of time.

And...sorry to hear about your laptop, always a pain.

Maybe. At 71, and even with frequent brain freeze, I am quite sure alzhimer's isn't the issue, but if it were, I would consider making decisions now to plan for it, especially since I live alone and don't have children.

I don't think I would want the test. Something about this makes me hear Rod Serling saying, "What if there was a test..." Kinda creepy.

On my mother's side of the family all the women (except her alcoholic sister!!!) in two generations started showing signs of Alzheimer's around age 75. I'm 68 now, and even though I don't think about it every day, it has made me decide to do all the things I want to do before age 75. Then, if I'm still fine, I'll keep on doing what I love to do.

Testing - - never for me. I have no children and also live alone, but I do have long-term care insurance, which I was able to get during open enrollment at the law firm where I worked. So I'm pretty much set, and enjoying very day of my life.

The only time I would want the test would be if there were a cure available.

I'm with annie (above) -- sometimes it's better to just live life, joyfully oblivious to impending doom!

I see no point in getting tested for Alzheimer's since there is no treatment for it. I was told 3 or 4 years ago that I have early macular degeneration even though I have no symptoms at all. All that proclamation has done is make me worry.

I agree 100% with Darlene.

Wow -- I know I wouldn't pay out of pocket for such a test as long as I didn't have symptoms -- too cheap.

But I find this fascinating in the context of something I'm going through now: I get my Medicare through what is probably the highest functioning HMO in the country. And now that I'm 65, they are pushing me toward all sorts of free preventive screenings (bone density, PAD, etc.). This fits with their model which is to try to keep us healthy because that's the cheapest care over time. But as screening gets better, where will this lead?

Appropriate paranoia or not? I don't know.

Why pay to find out you have something that can't be treated? I'd worry myself into an early grave looking for the first symptoms and wondering every day if this or that thing I did was a result of the disease. Maybe use it to help confirm a diagnosis, but not before then.

I'm on the nay side of this argument even though the test would probably be free in Canada.

What? Me worry?

I have enough trouble without looking for it!!

XO
WWW

And oh my, I do hate those laptop troubles, always at once too....:(

Good luck with it...

XO
WWW

OMG, I hate it when my computer crashes, which it does from time to time. I still work primarily on a desktop (although we have a laptop, I like the big monitor that works seamlessly with my desktop). Hope yours will be fixed SOON, Ronni.

As far as the Alzheimer's test, I'm with all your other responders. I wouldn't take it at this point. Why bother? There's no effective treatment. If Medicare ever decides to cover it and I have a tentative diagnosis (which I fervently hope never happens!) I might then--certainly not before.

Love the Rod Serling comment--I'm in total agreement.

In the past two generations, everyone in my family has had some form of dementia prior to their deaths. So that makes me think that I probably will, too. I'm signing up for Medicare for the first time and am already worried about what they will or will not cover, so I really am not crazy about seeking out additional tests. In fact, my doctor has already done all kinds of tests this year and I've figured out why -- it's not concern for my health, it's that she knows this is the last year I'll have BC/BS to pay for everything. I'm becoming very cynical about people's motives in my old age.

There would be no useful purpose for me to take a predictive Alzheimer's test without treatments yet devised. As others have noted, false positives are too prevalent with such tests for other medical problems. Likewise, an assurance that we won't have some medical problems are also subject to error.

Janinsanfran's "paranoia" about her "highest functioning HMO" is likely not unfounded.

Classof65 may well want to be glad her physician is doing those tests, as I recall my transition from BC/BS to Medicare. Many may well serve as important baselines for comparisons in the future. Medicare coverage is not likely to get better in the years to come and the criteria they use to determine allowing patients to have some tests may leave something to be desired.

Sorry for your computer crash. Earlier this week I took a whirlwind trip down the road to catch a geek before the store closed as I sought resuscitation for my frozen laptop that I couldn't thaw. Not as serious as what you've had. Hope all back in business before too long.

I'll take each day as it comes and deal with it.

What drives me crazy is having medical issues that I want to address and the doctors who want me to have testing done for other things. They can't or won't deal with the problems I would like to be taken care of in the present. I don't want to be thinking about the what ifs.

I finally found a doctor who has taken time to fix an issue that two other doctors ignored yet who wanted me to go for testing for to look for things that I did not go to them to have checked out.

I want to fix what is broken not worry about what might happen.

As you can tell this is a hot button issue for me.

Alzheimer's does not run in my family. I think it would be reassuring to know for sure. Because the disease impacts the victim's family in emotional and financial ways, end of life planning might be directed this way or that, early on. If the cost gets affordable and the test > 90% accurate, I might go for it. I'm 2.5 mos. shy of 77 and still have marbles aplenty.

My Mother was sharp as a tack all the way up to age 85. My Father was looneytunes (and his entire family were "out there" after age 75). So I guess I have a 50-50 chance. When I first read your question, my initial reaction is I'd like to know. I would never pay for the test, but I would like to know. Unfortunately, for me, I very much favor my father's side physically....after spending a minute thinking about it...I'd probably not go through with such a test. Why not enjoy my life now, while I still know that the key in the car turns on the engine.

There is already so much info and research pointing to diet and lifestyle contributing to Alzheimer's (which is being called Diabetes Type 3 in some arenas)that a far more effective test would be for each of us to look at how many processed foods we eat and how much time we spend sitting. The gene for Alzheimer's - APOE - is carried by 50% of the population and not a reliable indicator for developing the disease.

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