Misguided Research Is Dithering Around Alzheimer’s Again

Okay, let me get this straight.  We are looking for new science to stop an aged population from getting Alzheimer’s and getting dependent on others for that structured “senile” type care that is expensive and — let’s be honest — usually not enough to keep people really productive.

The first of the two studies reported here is basically saying that people with lower amounts of measurable beta amyloid marker have more cognitive decline over the nine years studied.  Another report on the elusive “marker” for Alzheimer’s.  If someone can tell with a blood test that you got it, what are you going to do? There are several drug companies, presumably including the folks at Avid Pharmaceuticals, who sponsored the second study, for a molecule that binds to the protein that ends up in microscopically visible “tangles” that show up in biopsies and autopsies of Alzheimer’s type brain tissue. It is also reported that educated people are less likely to get Alzheimer’s.  Frankly, this sort of finding is usually attributed to a “use it or lose it” analogy to the physical workout.  In some ways this is true. I remember some lovely studies when I was in France that led La Nation to tell seniors to slowly practice memorizing their shopping lists, and they did indeed seem to improve their recent memory.

I also remember a study I suspect the rest of the world has forgotten, called the “Minneapolis Nun Study.”

Here is a little bit of perspective of the history of Alzheimer’s research, and what was shown then. 678 nuns (who should all be canonized in my book) were followed, novice through autopsy. First, there seems to have been a significant non-correlation between clinical and pathological findings. That means, people are spending a LOT of effort and money looking for a marker for a brain substance which may not be terribly well correlated with signs of the illness, anyway.

Second, there seems to be a propensity for Alzheimer’s in those who have depression in early life.  People are plenty more aggressive about treating depression in children than they were even a few years ago, so at least we are stepping up to that one. The third major finding is to me at least the most intriguing.  The files on the good sisters started with the autobiographies they wrote when novices.  The most verbally articulate did not seem as likely to get Alzheimer’s. At least some part of the risk is determined by genetic endowment. And ability with words, maybe. Maybe some of us are born with both being good with words and some sort of anti- Alzheimer’s propensity. Thanks, Mommie and Daddy, for the great DNA.  I do really well on those verbal tests of mental acuity, always less than chronological age. I remember my first formal IQ test at age 9.  How excited I was to be way over my chronological age.  Isn’t the change of perspective that comes with aging amazing? So can we measure this, and decide who is likely to get into trouble later?  To a certain extent — yes. Our government has a fact sheet on this.

Genetic testing only shows “risk factors” for Alzheimer’s.  Isn’t this what we really want to know? This testing — which no known insurance will pay for –is available for a couple of hundred dollars not far from a place where I practiced for a long time. I figured out how to get a sample sent and get this test from pretty much anywhere. Never have I had a patient who wanted it.  They simply did not want to know their risk.  I would hear things like “what happens, happens.”

Me, I don’t need it. I saw my grandfather of blessed memory forget my mother’s (his daughter’s) name eight years before his death, and I watched it run its course long before I knew what it was or what could be done.

Don’t be an ostrich with your head in the sand — We all need to know our own risks. Then we can start our own prevention programs, and know how seriously we will have to take them.

You only have to prevent Alzheimer’s long enough to be able to die from something else. This does not yet mean forever, but why not go for it? As usual, everyone is going in the wrong direction.  The look for markers is a traditional research type direction.

Me — I would worry more about just how demented someone would have to be to have the “tangles” of beta amyloid protein in their brains.  I would worry about this a LOT more than I would worry about how good we are at showing the “tangles.” Okay, the neurofibrillary tangles show a strict “hierarchical” correlation with cognitive loss, whether “MCI” (Minimal Cognitive Impairment) or Alzheimer’s. I don’t give a damn about minimal — I just don’t want any.

I ain’t waiting around to get them.  I am not even waiting around for “cognitive loss for age.”  

People pay to see me in order to solve their problems, so I figure it is my business not to sit around waiting for cognitive loss.  After all, they say you start losing your keys or forgetting where you parked your car in the mall lot, say thirty or so, and from there it is downhill all the way for recent memory.

Oh sure, problem solving skills may improve, but recent memory is still a lot of what tells me which medication or supplement is correct for which person, so I am not going to let it go by. Sometimes the poets just say it better than the scientists.  It is hard for me to think of cognitive loss, whether it is of age or Alzheimer’s or whatever, without wanting to cheerlead my patient, telling him or her to fight, like Dylan Thomas said, “Do not go gentle into that good night/Rage, rage, against the dying of the light.” Of course, when Dylan Thomas wrote that poem, I think he was putting away about 35 whiskeys a night.  Alcoholism is a known risk factor for dementia, among other things.  Well, I suppose the man was a poet and not a physician. There is a saying in marketing, that it is impossible to sell prevention.  Nobody is going to convince a 21 year old who considers himself invincible enough to “expand” his mind by “experimenting” with drugs that it is time to start thinking of Alzheimer’s prevention. One of the saddest cases of (admittedly, still early) Alzheimer’s I know is a still competent and very distinguished professional woman who while working her way through university in the swinging sixties, partook of multiple substances – the list of which straightened my crazily-curly hair. It will be a long time until anyone notices her dementia, as she takes a lot of beneficial supplements now, but we both agree she ought to make all the money she can now, in preparation for the time when she no longer can.

At the risk of repeating myself, “experiementing with drugs” isn’t really experimenting if nobody is collecting data – much less filing documents with an IRB (Investigational Review Board).

Don’t feel bad — I never get a laugh with that one – probably too much of an inside-joke. Once someone clears their mind and faces the music about risk factors, the idea that more highly-educated people are less likely to get Alzheimer’s may make some sense. But I have certainly heard of at least a few cases where people were so educated that nobody noticed a cognitive decline.  The decline was only noticed when a close relative dragged the patient kicking and screaming to see a physician who knew what he or she was doing — admittedly a rare occurrence.

Who wants to admit they are demented? What motivates the new science?  Grants and publications and tenures and fame?  Maybe.  Helping my quality of life, and my brain, stay free of dementia?  I cannot see it. I am not, at least not yet.  When my husband first met me I had a steamer trunk full of supplements I dragged around.  We have refined that a bit – down to maybe a suitcase-full. But not only will we NOT go gentle into that good night, we want to retain our brains.  We do not just rage against the dying of the light.  We fuss.  We kick and scream. I make medical knowledge work to make and keep me the “me” I want to be.