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February 01, 2008

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Diane

I do not like the name of the book as it implies to "have" or to be living with a debilitating brain condition is a myth. I will not be reading the book and can not imagine anyone saying "brain aging" is a normal thing when it happens to people in their 30's and 40's and they have their lives cut terribly short.

Mona Johnson

Diane,

Thanks for your comment. Having read the book, I think the authors are talking about late onset Alzheimer's, not early onset.

I also do not believe they are downplaying people's suffering, but instead are saying our current approach isn't working.

Mona

Danny George

Dear Diane, thank you for your comment. To respond to your concerns, the word "myth" in the book's title refers to the misapprehension that Alzheimer's condition is a singular condition that is distinguishable from brain aging. In reality, what we call "Alzheimer's" represents multiple processes closely related to brain aging; therefore the idea that we can "cure" Alzheimer's is the equivalent of saying we can cure aging. Another "myth" is that those who are labeled with Alzheimer's become non-persons. I'm confident you would agree that there is still much vitality and human connection to be had even in the throes of the deepest dementia. We need to get over the myth that a singular disease called AD steals selfhood and that we can fix it with a silver bullet drug. Mona is quite right that our book is concerned with late onset dementia (60s, 70s and 80s and beyond). Clearly, those who are suffering from dementia in their 30s and 40s have a genetic condition that can be fairly called a disease. I hope you will give the book a chance and not reject it based on one word in the title. I think you would find affinity with our message. Please feel free to email me, or post on our website www.themythofalzheimers.com. take care,
Danny

DON MOYER

Before I knew about this book and before I read Mona's account I had posted similar comments on my blog 28 Jan 2008:
http://alzsh.blogspot.com

For years Jenny and I have been arguing that our focus should be on enjoying life in spite of memory and neurocognitive challenges and are coauthors of a soon to be published paper which shows how our fellow travelers do enjoy life.

And, we've commissioned a literature search on what we know about activities which help us enjoy life in spite of our challenges. There'll be more news about this by April – Watch: http://alzsh.blogspot.com

Thanks. Don

Deb Peterson

Mona
The first time I heard the title of Dr. Whitehouse's book I had a response similar to Diane's, but after reading your post I realize that we do need to question the category of Alzheimer's. I'm not suggesting that it doesn't exist but that it's not as quantifiable as we might think, merely because the brain is so complex. I think of the ways my mother's dementia has defied prediction and also wonder if our post-diagnostic expectations can be self-fulfilling prophesies? I'm looking forward to getting my hands on this book now! Nice post!

Gail Rae Hudson

Mona! Hey!
Well, finally I'm back, scrounging the journals of others. More layout changes, I see, all nicely done, by the way! I love the utility of scanning the first few paragraphs of posts in order to sample before reading further. Great touch!

Thus, it shouldn't surprise you, considering my experiences with my mother, to know that, even though you directed me to the conference post in one of your recent e's, and my intention is to get to that, from all the "samples" on the index page I chose this one through which to stay my first (after a long absence) course. From what you've written, I have to say that I'm impressed with George's and Whitehouse's thoughts and eager to explore them more fully; I'm glad a website is listed for them. You, personally, know that I've been at odds with some who consider their elders with dementia to be in a Country of No Admittance and mourn their passing before they're dead...and, believe me, taking into consideration not only my mother but my maternal aunt and my grandmother, I've witnessed the worst of which dementia is capable. Even though I tried, I doubt that I was ever admitted to my grandmother's country in the last months of her life.

But, you know, your review of this book encourages me to think that we have come through the fire and are beginning to enter a phase of societal sanity when we think about, observe and relate to dementia, a sanity I suspect many individual friends, relatives and caregivers to Ancient Ones throughout the ages have also found themselves reaching. Thank the gods. I suspect that George's and Whitehouse's book is full of important insights, but, from your article, I'm thinking that it is only the beginning and the insights that follow increasing societal sanity will be even more important and startling, as well. I am especially moved by the personal touch you added to your article regarding your ever evolving thoughts about your father, you and dementia. That's bravery, Mona.

I'm impressed that George responded personally to a commenter. I salute you, Daniel George!

Richard Taylor

Last week I was speaking in Ohio and someone told me the authors of “The Myth of Alzheimer’s” were also speaking nearby at another conference. I got a ride over to their conference and heard them and then WOW!

We sat down and talked for two hours.

Earlier I had spoken with them on the phone, they were reading my book as I was reading their book, and we both wished we could speak to each other.

I spent the afternoon with these two brilliant, thoughtful, thought-filled, caring, and very sensitive brains, authors, human beings thinking out loud, listening, talking, and getting to know them.

The provocative title of their book (The Myth of Alzheimer's) is of course a double edged sword. It probably draws as many people to read the book as it draws as many people to not read the book, but think they know what it is all about by the title.

They challenge what we thought we knew about the disease and how we think about the disease. They are searching, as are we for answers to questions which seem to come from a growing consuses that the claim/hope/hype coming from the pharmaceutical industry and organizations deeply invested in the idea that Alzheimer’s is a discrete disease and there is and will be a pill to cure it, is not in fact true!. All we have to, they keep shouting, is to spend enough money (NOW!) to discover (stumble across) the formula for the pill that will cure the disease. And in the mean time let’s also spend more money on pills to maybe slow down the progress of the disease (even though we really don’t know how or what we mean by the progress of the disease, nor how to measure it).

These authors are in my opinion and I think in theirs also, works and minds in progress as is the book.

When I was a young man I was always amazed that whenever the Beatles came out with a new album it reflected exactly where I was. We (they and yours truly) sort of evolved together, but many miles and dollars apart! These two researchers/thinkers aren't modern day Beatles, but they sure parallel my own thinking process about Alzheimer's disease, symptoms, syndrome, condition, and/or whatever and however you want to characterize the condition!

Although the bottom line for us who are somewhere in the midst of the disease process is how to cope with it, how to maintain a sense of purpose, how to stay in the moment - in today, it is useful to understand how others have framed for us what is wrong with our brain vs. the brains of others. The book wonders aloud how and why we got where we are. What part of this process is generated by what others tell us and what part is generated from within? And, how do these two streams interact? Are we victims of a disease or participants in the natural aging process of the human brain which varies from person to person depending on genes, our education, what we eat, the air and water we inhale and drink, and on and on and on.

Read this book, please. It is to me irrelevant if you fully agree with their interpretation of the science of dementia, what is right-on is their understanding of the psycho social impact of being told you have the disease (or condition, or symptoms, or syndrome) has on people, more specifically yours truly and his family and friends. We have allowed ourselves to be captured by a medical model which just doesn't fit, doesn't serve us, and can't serve us.

We have swallowed messages from drug companies which are full of carefully and creatively worded claims that are based on assumptions about how the brain works, why it works a certain way, and how that causes a condition, a set of behaviors we have labeled as a disease. These assumptions are not a part of "the big picture" of how the brain works. There is no big picture. To start to paint small pictures is dangerous because we still have no firm, research based, universally accepted understand of what the big picture looks like.

The picture is not like an x- ray. It isn't one or two or even three dimensional. It's not fixed. It is interactive, and it is dynamic in ways we only speculate about.

The message, the value for me from this book and my conversations with these thinkers is - the Medical-pharmaceutical complex and the organizations which claim support for us and the elimination of our disease as the reasons for being don't have answers, solutions, even the right questions for us. We must search them out, work them out with each other and with the few knowledgeable professional scattered across the country.

The best and most important action we can take (or at least this is what I believe) is seek each other out. Find/form/try groups, people, organizations, services, and if they aren't working try something or someone(s) else. But, keep trying to find solutions to the psycho-social-physical-real-imagined problems which come attached to the words "you have dementia, probably of this or that type."

Like the military-industrial complex, that defines how best we should "lead the world" through military superiority, the drug company-Alzheimer organizations complex has defined for us what is going on between our ears and how best we should respond to it. In the longer run (although they have said for more than 20 years the run is getting shorter and shorter) research will produce a cure for the disease - so they tell us. More money spent on research should shorten the time it takes to find a cure. More is by definition better than the same or less.

And what of us living in the disease, condition, what-ever they end up calling it? Should we too be patient? Should we advocate more funds for research? Should be follow the leaders, or tend first to ourselves and our families?

Should we watch as more and more dollars are thrown at researchers who sit with mice, models, theories, guesses and hopes? Or should we stand up and advocate for more psycho-social research into how we can better cope with our symptoms?

For me it isn't even a close call. I'm not advocating giving up bench based scientific research, but clearly the people who allocate our tax dollars for research, the people who ask us for our own money to “support people with alzheimer’s disease” have lost site of the consequences of this disease on people in favor of walking for a cure. They have priories that place research before people, tomorrow before today.. One National organization spends sixty cents + of every dollar it raises on supporting the search for a world without Alzheimer’s.. Thatt leaves forty cents to cover overhead, fund raising, advocacy, other National inititiatives, and oh yes with what is left a few cents for dealing with the world with alzheimers.

That’s back-asswards! It’s people who don’t have the disease focusing more on other people who don’t have the disease than on people who do have the disease. What am I missing here? It’s just plain wrong-headed. And now along comes these researchers who suggest it’s more than a case of the wrong priorities. It is a case of misdirected, misspent efforts based on false assumptions. Assumptions promoted by individuals who have much to gain by promoting the assumptions. These aren’t evil people, it’s just the unintended consequences of their well intended actions produce more problems and less solutions for the people for whom they claim to champion.

Let's all stand up, all 5 million of us. Let's let others arm wrestle over brain aging vs. a healthy brain under attack by a disease which is amenable to a cure.

Let's ask for, (dare I say) demand more support and research for our issues, today. Many of the national and local organizations which raise money in the name of our disease have decided for us that research for a cure is much more important (look at how they spend their money), than supporting us.

It's time for an immediate change from a primary emphasis on the search for a cure to a primary emphasis on the search for evidence based strategies and behaviors to support individuals and families who struggle with the symptoms of dementia every day.

Write someone. Call someone. Speak Up! If we don’t speak out for ourselves, who will?

Richard

Gail Rae Hudson

Whew! Thanks for bringing my attention to the above comment, Mona! As I read Richard Taylor's remarks I couldn't help being reminded me of the database you are forming with others of which you speak in the bracketed post [http://www.tangledneuron.info/the_tangled_neuron/2007/12/article-on-alzh.html] and on which you are working.
Carry on, Mona! Carry on Richard! Carry on, George and Whitehouse! For that matter, carry on Mom; and carry on, me!

Lisa Genova

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 my 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 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.

DON MOYER

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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