Alzheimer’s disease: Still one step forward, two steps back?

What’s your top worry about growing old?

The one thing that gives you the most anxiety?  OK, other than outliving your money.

But other than that, isn’t Alzheimer’s Disease your greatest fear? It’s a brain-destroying, progressive, irreversible, and, ultimately, fatal, disease. And the likelihood of being stricken increases dramatically after the age of 65.

Don’t  you dread the thought of ending up with Alzheimer’s disease yourself or of caring for a partner—formerly so vigorous, energetic, and  competent—who now needs help going to the bathroom and getting dressed and managing the simplest tasks of daily living? I know I do.

Diagnosing Alzheimer’s

And to make matters worst—and how much worse could they possibly be—until recently there was no way to diagnose the disease while a person was alive. The only way to diagnose it was to wait until she died and an autopsy of her brain was performed. So last year’s news of a break-through in diagnosing Alzheimer’s was very promising.

The research involved doing PET (positron emission tomography) imaging of the brains of people who’d previously been diagnosed with Alzheimer’s Disease and did not have long to live. When they died a brain autopsy was done, and the results were compared with the results of the PET scan.

Results of PET brain scans

Initial news reports indicated that the PET scans and the brain autopsy results were in agreement. Patients whose PET scans showed plaque while they were alive showed plaque after they died. And those whose scans showed no plaque while they were alive showed no plaque after they died.

They also showed that some of those who had died—approximately 20%—did not have Alzheimer’s disease at all. That’s significant for several reasons. For one thing, it means that they had some other condition for which they might have been treated successfully. For another, it means that when such patients are treated with an experimental drug—which is the only kind we have to treat Alzheimer’s—we can’t tell anything from the results.

Objections raised

So the results were extremely encouraging. But as often seems to be the case with Alzheimer’s research, it was one step forward, two steps back. An article describing the PET imaging methods and results was published in the “Journal of the American Medical Association (JAMA)” in January, 2011. It stated that each PET scan was evaluated separately by three doctors on a scale of zero to 3 (where zero is no plaque and 3 is severe plaque).

Several months later, a group called Public Citizen commented in the same journal that the article had withheld certain data that the company had submitted to the Food and Drug information and that

FDA analyses of these data show substantial interreader variability….

In plain language, the comment means that the doctors who rated the images often disagreed and that the JAMA article did not disclose that fact.

Interpreting images not an exact science

This is no mere nit-picking. The point was that the doctors often disagreed about who definitely had had Alzheimer’s disease and who had not. And the problem is not limited to brain scans. It’s a common problem even with well-established screening and interpretation of images, such as mammograms.

My questions

***  Is the PET imaging and screening reliable enough to distinguish between a person who has Alzheimer’s Disease and one who does not?

***  If the imaging is very expensive—which I assume it will be—will people with some evidence of declining cognitive function first be screened by earlier methods? The same methods which give false-positive results approximately 20% of the time?

***  Who will pay for the PET images and screening?

***  If the result is ambiguous and the screening is very expensive and insurance may not cover even an initial screening—let along a repeat screening—what then?

***  Given the current state of knowledge, what can I do to reduce my own risk?

My plan

I have no answers, but I do have a plan. Since nobody know what causes Alzheimer’s, I’m going to keep on doing what I’ve been doing—eating a Mediterranean type diet; being active physically, mentally, and socially; and taking my meds. That’s the way I manage Type 2 diabetes which may (or may not) put a person at increased risk for Alzheimer’s.

How about you? What do you think? Do you worry about Alzheimer’s Disease? Do you do anything that you’ve read “may” reduce your risk? What are those things? Or do you take good care of your health and hope for the best as I do? I welcome your comments and questions.

photo by 10411559@N07

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  • Old Gal 08/15/2011, 4:14 pm

    Madeline,

    This is a good article. I have a friend whose mother and aunt both had Alzheimer’s Disease, so her chance of having it as well is higher than normal. So I read all I can about it. I have also asked my friends to be sure to tell me if they observce changes in me that might be indicative of the initial stages of AD. I guess I would not be as alert to those changes as they might be. Like you, I try to do everything I know might help: exercise, healthy eating, mental exercises like sudoku and crossword puzzles, keeping up to date on medical exams and tests, etc., etc.

    Yes, it is very frightening. Thanks again for the article.

    Old Gal
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    • Madeleine Kolb 08/15/2011, 7:50 pm

      It makes sense to manage what you can manage to stay as healthy as possible and to keep up with advances in Alzheimer’s research. Especially since nothing’s been shown to ward it off or delay its onset.

      I appreciate your comment.

  • Mary 08/08/2011, 7:07 pm

    I have a sister who works as a pharmacist at a hospital and she gets a lot of patients who have Alzheimer’s. She says that it’s a very sad thing to watch especially with all their family around. As for me, I don’t have anyone in the family who has this disease but I do try to live healthy and hope for the best. I actually try not to look up things online to read about health/diseases. They’ll only pile on unwanted stress and concern! I do the same, I have a whole stockpile of vitamins in the cabinet.
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    • Madeleine Kolb 08/09/2011, 8:55 am

      Mary, I think the take-away message from everything written about Alzheimer’s Disease and aging in general is this: The recipe for being healthy throughout your life is to learn to manage your own health. The basics are eating a healthful diet, getting plenty of physical activity, and not smoking. Being active mentally and socially are also vital. Doing these things may prevent Alzheimer’s Diease, or they may not. But they’re things you should be doing anyway.

  • Sue T 08/01/2011, 6:14 pm

    My Mom had it, her sister has it, one of Mom’s brothers has it and two others had other dementias, so of course I worry about getting it. The thing I should be doing is exercising more. The things I am doing are controlling my blood pressure with medications, adding more vitamins, and trying to eat more green vegetables (and other veggies). I would like to get a screening in the next five years, if the scanning becomes more reliable.

    What I also notice in reading about Alzheimer’s patients is that having a “job” and opportunities to be social are really important in making it more tolerable for longer periods. So, I try to hang out more with extended family members.

    • Madeleine Kolb 08/01/2011, 8:33 pm

      Sue, Your family history is a cause of concern for sure. I keep seeing that the most important things to do as we grow older are to eat a healthful diet and keep active physically, socially, and mentally. You’re already doing most of those. And even if they don’t absolutely prevent Alzheimer’s, the evidence is clear that some of those things prevent other diseases, such as heart disease, diabetes, or depression.

      It’s fascinating to me how important it is to have a job or other pursuit which is mentally challenging and social interactions with family and friends.