Apr 092008

Peter Whitehouse and Daniel George wrote a book called The Myth of Alzheimer’s.  In it, they claim that “there is no such thing as Alzheimer’s Disease.”  “Alzheimer’s Disease represents our culture’s attempt to make sense of the natural process of brain aging that we cannot fully control.”  So, in an attempt to control it, “we’ve created an antagonist” and named it Alzheimer’s Disease.

They claim that because we don’t know the “singular cause” of Alzheimer’s, because we can’t cure it, and because we can’t differentiate Alzheimer’s from normal brain aging, we should stop diagnosing people with this “label.”  Labeling someone with Alzheimer’s only causes them harm from the stigma attached to it.  We should stop treating people with Alzheimer’s medications, and we should certainly stop looking for a cure.  Dementia is just normal aging, and you can’t cure aging.
Wow.  Where do I begin?
Let’s start with cancer.  We don’t know yet what causes cancer or how to cure it.  We treat it with crude, non-specific poisons that risk the very life of the person who takes them.  There used to be a HUGE stigma attached to having cancer.  Remember when everyone called it “the big C?”  Cancer is not caused by one singular process.  It is caused by a complex interaction between genetic and environmental influences.  Should we not call cancer a disease?  Of course not.  Do we not tell someone they have cancer because of the stigma that might be placed on them?  Of course not.  Do my chances of developing cancer increase as I age?  Yes, they do.  Is cancer a normal part of normal aging?  No, it is not.
Likewise, we can think about heart disease.  Do most people develop accumulations of plaque in their arteries as they get older?  Yes, they do.  If untreated, will most people develop cardiovascular disease if they live long enough?  Yes, they will.  So is having cardiovascular disease a normal part of normal aging?  No.  Over the course of 50-100 years, we, as human beings who eat fatty foods and don’t exercise enough, develop plaques that clog our blood vessels.  This leads to decreased blood flow to the heart which leads to oxygen deprivation of the heart muscle which causes a heart attack.  Do we just accept this as normal aging and do nothing about it?  No, we do not.  We diet and exercise.  We go to the doctor and get tested to see how much plaque we might have blocking our arteries.  And we take medications, like statins, to decrease the buildup of these plaques, decreasing our chances of getting a heart attack.
Proclaiming that Alzheimer’s is not a disease and that dementia is due to normal aging is simply wrong and irresponsible.
Genetic mutations in the genes for presenilin-1, presenilin-2, and amyloid precursor protein CAUSE Alzheimer’s Disease 100% of the time. Malfunctions caused by mutations in these proteins result in a buildup of amyloid beta 42, causing clogs in neural synapses, causing dementia.  This process causes disease.  A malfunctioning presenilin-1, presenilin-2, or amyloid precursor protein is not a normal part of normal aging.
Normal aging is forgetting someone’s name.  Alzheimer’s is forgetting your spouse’s name.
Yes, diagnosis is tricky today.  We are still developing the tools sensitive enough to measure what needs to be measured to detect Alzheimer’s Disease.  An MRI is not sensitive enough.  A blood test won’t reveal it.  Plaques (are you looking at diffuse or neuritic?) and tangles are not accurate correlates.  Pencil and paper tests are only so telling.  Again, think about cancer. Diagnosing cancer can include tests and scans that have false positives and false negatives.  It can involve invasive surgeries to rule it in or out, to determine if the mass is benign or malignant.  The diagnostic process may be imperfect, but we use every piece of information we have available today.  Just because diagnosing Alzheimer’s today is difficult, it doesn’t mean that there isn’t a disease there to diagnose!
And we should diagnose Alzheimer’s if it’s there.  Why?  Because we can treat it with Aricept and Namenda.  Because we can exercise, eat a Mediterranean diet, meditate, and stay mentally active.  Convincing people that Alzheimer’s is not a disease and should not be diagnosed will needlessly keep people who are suffering with dementia away from doctors, away from Aricept and Namenda, away from planning responsibly for their future. In denial. Not to mention frustrated and scared.
Maybe, in the future, we will be able to treat this disease without saying the words “You have Alzheimer’s Disease.”  My grandfather died in 1978 of heart failure at the age of 69.  My father had high cholesterol in his fifties and went on a statin. He walks several miles a day. He is now 67, and his cholesterol levels are low. He has never had a chest pain. He was never told that he had heart disease. He was at risk. I hope he outlives my grandfather by a couple of decades.
Maybe, in the future, the treatment of Alzheimer’s will look more like this, more preventative. Family history, an amyloid-specific scan, and some neuropsychological testing show you’re at risk for developing Alzheimer’s, so you go on medication and stave off symptoms to maintain quality of life for as long as possible.
Growing old without Alzheimer’s.
But we have to bust Whitehouse and George’s myth and acknowledge first that Alzheimer’s is a disease.
Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

  3 Responses to “Busting The Myth of Alzheimer’s”

  1. The book may push the argument a bit too far and may be more provocative than some would like, but I do think that there are some very important messages in the book.Wearing my science historian hat I can talk about very many episodes where naming an apparent phenomenon led to reifying a mistaken idea, which misled people to waste a lot of effort before it was seen that the apparent phenomenon was a complex combination of phenomena not at all well represented by a singular name. One might argue that cancer researchers were misled for a long time as they imagined that cancer was a singular disease where a cause could be found and cured.Reification of "diseases" can mislead clinicians and researchers and can surely hurt diagnosed persons. An open conversation about the reality of any "disease" is certainly healthy and should be welcomed not quashed. We all need to do the work to understand all sides of this conversation.We too much encounter the question, "how do you feel about having a dread disease" rather than help for managing the challenges and for enjoying life. We, living with the challenges, have deep knowledge of the many ways the words "Alzheimer's disease" are profoundly harmful to diagnosed persons – and harmful to their health. There are ways to communicate diagnosis and prognosis which, rather than doing harm, lead to help managing existing and future challenges.Note, how "injury" and even "disability" are far less onerous. And, note how injuries and disabilities are seen as normal consequences of life, which we treat with respect as we help persons manage their challenges.It may turn out that all cases of "Alzheimer's disease" are caused by injuries and that genetic risk factors etc. are not causes but facilitators allowing post-injury repair to go haywire.

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  3. I am new to this – my domestic partner was recently diagnosed with dementia. Having just read "The Myth of Alzheimer's", I have a different take. The authors are not nearly as cut-and-dried about these things as you make out. Whitehouse cautions about the various drugs available, but says basically that, while they may be useless for many or even harmful in some cases, in other cases they can be valuable.
    The authors advocate for checking with doctors and learning about cognitive loss; they in no way discourage getting medical advice and assistance. I found them to be nuanced and very aware of human variability.
    You, on the other hand, seem overly ready to accept drugs that should be looked at with caution. One of our local Alzheimer's Association people attended a recent expert presentation at which Alzheimer's drugs in general were given the following ratings: 25% helpful, 25% harmful, 50% neither harmful nor helpful. Considering the cost and the still unknown long-term effects of these drugs, that hardly justifies a blanket endorsement. In checking the two you mention with WebMD, Namenda got and average rating of moderate for effectiveness and satisfaction, while Aricept got low-to-moderate on both.
    By the way, I just learned about Still Alice (from checking out one of the resources listed by Whitehouse and George), and plan to read that also.

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