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The Anecdote Versus The Evidence

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Let’s face it, little progress has been made in Alzheimer’s research over the last two decades.  We have volumes of studies on amyloid, tau, estrogen, and insulin.  We have drugs on the market that claim to improve the early symptoms of Alzheimer’s disease that may or may not actually work.   The truth is that most of them narrowly missed the trash bucket on their journey through Phase 3 drug trials.  There is yet to be a momentous discovery.  There has been no landslide of evidence to rocket Alzheimer’s disease to the finish line.  Evidence creeps along at glacier speed.

There is some positive news on the evidential memory front from the behavioral psychologists and researchers who put people with mild cognitive impairment through four hours a day, five days a week, seventeen week long spaced-retrieval/cognitive retraining programs.  Those folks are showing some improvement.  The method is tiresome and impractical for the typical patient and caregiver, but all are hopeful that these concepts may someday morph into helpful strategies.

Researchers are looking hard at our DNA too.  The geneticists are making progress in identifying alleles that carry a propensity for developing Alzheimer’s.  But for the majority of people who have or will develop Alzheimer’s disease, this evidence is hardly helpful.

What about outside the body?  Is there any common thread between people who develop Alzheimer’s disease and the environment, or heavy metals, or occupations, or diet?  Nope, can’t say that there is.

My point here is not that research is useless or hopeless.  Indeed, we all are walking for a cure in our purple shirts in support of this cause. But for the hands-on caregivers who are just trying to get through the day with as little stress and anguish as possible, there are too few evidential approaches that make living with Alzheimer’s any easier.

We need practical answers… now.  Anecdotes are really all we have to go on.  This means that what worked to distract my Aunt Sally on a Tuesday when she was trying to get out the door might work for your Uncle Bob who keeps looking for the car keys.  Anecdotes may be based on actual research, but used out of context without concrete proof of their effectiveness.

For example, the evidence shows that people with Alzheimer’s disease initially show a deterioration of brain activity at the hippocampus.  The hippocampus, which can no longer store new memories (amnesia), is in close proximity to the language and auditory processing centers.  It makes sense, then, that aphasia is another classic sign of Alzheimer’s disease.  But what we haven’t studied enough, in my opinion, is that the visual and motor cortexes are very much intact in the early stages and are capable of compensating for memory impairment.  This is why the act of demonstrating commands is more effective than speaking them.  And it is also why a severely demented person can find his way to the bathroom or the dining room of a new environment just by having repeatedly performed the movement of walking to those destinations.  Repetition breeds performance… or motor learning.  Read The Memory Cure for information on this concept.  Good stuff.

The downside of the anecdotal approach is that it requires a patient attitude and nimble, flexible tactics to keep pace for the long haul.  Alzheimer’s disease changes the game on a daily basis, and what worked yesterday may not work today.

This website is a collection of tips and ideas that are loosely based on research.  It is impossible to present rigid, objective data for a functional activity like shaving or dressing- proving that one approach is more successful than another- when there are too many variables in the mix.  What you will find, though, is that anecdotal evidence approximates actual theory based on the stage of dementia and the amount/location of healthy brain function that can be recruited to perform common, daily tasks.

In other words, if traditional approaches don’t work, find another way in.

It’s the best we can do… for now.

 

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