I just finished reading Peter Whitehouse and Daniel George’s book The Myth of Alzheimer’s.

How dare you! you want to say when you first see the title. My mother went through hell with this disease, and you’re saying it’s all imaginary? HOW DARE YOU!

Then you read the book and understand.

I’m not sure I agree with the entire revision of the story of Alzheimer’s, but I did like the tenor of the book. It’s compassionate toward those who suffer from dementia and even more so toward those who suffer from the stigma of dementia. It is angry at Big Pharma—the machine that markets fear of dementia so they can sell their mostly ineffective drugs. And it is angry at the medical establishment that succumbs to that marketing—toward doctors who accept gifts (in disguise) in exchange for prescribing Big Pharma drugs to their patients.

Dr. Whitehouse stresses that he was one of the cogs in that machine. His research helped write the story of Alzheimer’s as a disease, and his advice was sought after by pharmaceutical companies as they worked to develop drugs like Aricept and Namenda.

He was part of the machine until he realized he had helped create a monster that now feeds on the stigma of dementia such that no one is allowed to age with dignity if aging includes any level of dementia. The stigma of dementia has been blown up so large that anyone with a tinge of it is considered finished. People are no longer a mixed bag of assets and deficits. Once a person’s memory starts to go, he has no value unless the “deficit” is “fixed.”

Dr. Whitehouse points out instead that even with cognitive deficits, human beings still have plenty of assets to draw from in living fully satisfying lives.

So what is the myth?

The myth is that Alzheimer’s is a disease you “get” all of a sudden most likely because of some genetic time bomb you happen to be carrying. The myth is that we will find a cure if we pump enough money into drug R&D.

The truth, according to Whitehouse and George, is that aging causes physical and mental decline; the truth is that you can have beta amyloid plaque with dementia, dementia without plaque, and plaque without dementia; the truth is that everybody’s brain ages at different rates, and we are seeing increasing dementia because there are a lot more people aging these days, because we’re not living healthily, and because we keep extending man’s lifespan.

All researchers agree that age is the single most important factor in the onset of Alzheimer’s, so why not just call it what it is: brain aging?

Sadly, the biggest truth hidden by the myth is that you can have a full life despite some mental deficits (and Dr. Whitehouse tells story after amazing story to prove it).

Throughout most of this book I felt hugged and calmed.

That said, I have some questions after reading The Myth.

According to this book, the first “Alzheimer’s” patient was a young-ish woman code named Auguste D. Auguste D. was in her late 40’s when she started showing symptoms of dementia and aggression. Dr. Alzheimer thought it very odd that someone so young should succumb to dementia. He autopsied her when she died at 50-something and found the famous amyloid plaques and tau tangles in her brain. The average age of death at the time was 51.

My question is, if the average age of death was 51, why did Dr. Alzheimer think Auguste D. shockingly young? If people’s bodies aged quicker in 1906 than they do now, why not also expect that their brains would age quicker? And if we have managed to extend the body’s lifespan, why hasn’t the mind followed, given that the two are interconnected? (I suppose the simple answer is that back in the day, people died of other causes than age?)

I also have a problem with part of Dr. Whitehouse’s perspective. From the advice given in the book, it seems that he deals mostly with older people suffering from the beginnings of dementia; people who are retired and don’t have to make a living anymore. The advice to keep mentally vibrant by volunteering, reading, and traveling is laughable if you consider the segment of the population that is hit with early-onset dementia and can’t afford to keep their homes or feed their families without an income, let alone travel!

People with dementia lose jobs. It’s not pacifying to say they don’t really have a disease; that their brain is simply aging a little bit faster than the norm. There is something terrible about losing your mind in your prime.

For anyone in this category, a diagnosis of Alzheimer’s can be the only way to get financial and medical help. And until someone comes up with a more accurate diagnosis that is recognized by the system, let it be Alzheimer’s.

To be fair, on this point Dr. Whitehouse agrees, and he does reluctantly offer a diagnosis of dementia as disease (Alzheimer’s) to those who need insurance coverage even as he encourages these patients to look beyond the label and make the waning years count.

But there’s a certain amount of circular reasoning in Dr. Whitehouse’s argument. From page 37:

We can still pursue every treatment available—including drugs—while shaping a gentler and more holistic brain-aging narrative.

Problem is, if you dismiss Alzheimer’s as a myth, there is no basis for research into drugs that may help the condition. By dismissing Alzheimer’s as a label that can be abused by Big Pharma, you also remove the basis for funding into understanding the aging brain. Sure, greed feeds on money, but so does genuine altruistic research.

Does anyone have a better perspective? Unfortunately, the question of Alzheimer’s as either “normal aging” or “disease” is still unanswered in the research community at large.

This week I attended a webinar that discussed a new hypothesis of Alzheimer’s as an accelerated process of aging set off by an initial injury such as a head trauma or infection. The hypothesis acknowledges that the pathology of Alzheimer’s is the same as normal aging, yet it allows for an unnatural first cause, thus making it a “disease.”

This new story of Alzheimer’s didn’t seem to make lift-off because there was a lack of definition for “initial injury.” One panelist proposed that instead of a single event, the initial injury could be a cumulative set of factors. It was agreed that this could be so, which brought the hypothesis right back to the paradigm of normal aging.

Still, I agree with researchers looking for that elusive element that makes some people appear to jump tracks in the aging process. Dr. Whitehouse uses the hand with its five extended fingers marking different trajectories to illustrate the differences in aging curves. I want to ask him, what of those whose trajectories start at the elbow? Do we really chalk up early-onset dementia as one of several normal aging trajectories?

I saw my grandparents age close-up. All but my father’s father (who died at 81-too young to fall prey to senile dementia) drifted into dementia at a ripe old age (late 80’s to mid 90’s). None of them seemed particularly perturbed by the process. They were loved and well cared for.

But my parents suffered debilitating cognitive loss while still relatively young (my mother from her mid 60’s and my father in his mid 70’s). Dr. Whitehouse talks about a “matrix of causal factors” leading to dementia. My parents were models of the mental health matrix:

    They were highly educated
    They loved books
    They were surrounded by people of all ages
    They volunteered
    They stayed away from alcohol and nicotine
    They traveled
    They were teachers, and when they could no longer speak, they were kept on as consultants
    They were given to prayer and meditation
    They had no history of early dementia in their families
    They spoke multiple languages
    My father tended orchids, my mother painted portraits
    They drank high anti-oxidant tea and ate lots of fruit

Their example is baffling. You would think they wrote the book on cognitive longevity. Why did they fall prey to dementia so early? What went on differently for them than the normal aging process, and is that “extra component” something that can be stopped in its tracks?

I don’t blame researchers who believe there is such a component and persist in looking for it.

[My pet theory for my parents’ cases? Toxins! Environmental toxins (pesticides, insecticides), medical toxins (antibiotics overuse), and emotional toxins (stress from difficult years as foster parents)—all exacerbated by sugar]

As for dealing with the social stigma of the dementia label (stigma-tazing, as I call it), here, too, is circular talk.

Get Busy Living, Or Get Busy Dying T Shirt shirtI belong to a Facebook group for early-onset Alzheimer’s sufferers and their caregivers. The group shares the whole range of human experience on a daily basis. They share their anguish, elation, silliness, and deep wisdom. The overarching goal is to raise awareness of Alzheimer’s, and particularly of early-onset dementia in order to erase the life-sucking stigma of this condition.

One of the group’s mottos is “Get busy living, or get busy dying.” Those on the site with dementia are not asking for society to accepted them as normal because they’re not. They wish for society to accept them as they are—broken, but still carrying a zest for life.

Sometimes I wonder if this fight for awareness is asking people who are busy living to get busy dying a little. If it is, why would we expect perfect strangers to chose death if our own goal is to shut the door on dying and get busy living?

The last chapter in The Myth of Alzheimer’s touches precisely on this point, and expresses what I think is the most important truth of all: we all have to die before we can truly live. We have to come to terms with our mortality, with the fact that we will age and break down, before we can devote ourselves to living fully. And we have to die so others can live. In the world of aging and dementia, caregivers are very busy dying so that their loved ones can keep on living.

Dying and Living is not an either/or question. We need to enter into the death of those who are suffering so that, together, we may live.