We seem to be rethinking everything right now - the energy we use, the pollution we create, the foods we eat. Peter Whitehouse, a prominent Alzheimer’s researcher and doctor, is also rethinking the disease we call late onset Alzheimer’s.
In his new book, The Myth of Alzheimer's: What You Aren't Being Told About Today's Most Dreaded Diagnosis, written with Danny George, Dr. Whitehouse questions just about everything we think we know about Alzheimer’s and memory loss. Their book comes at a time when I’ve started to rethink my late father’s dementia after two years of blogging about Alzheimer’s research.
In some ways, The Myth of Alzheimer’s is a practical how-to manual, with information about treatments, alternative medicine, avoiding toxins, and the role of diet, exercise and stress reduction. It includes clear explanations of the science and theories behind Alzheimer’s, and ideas on how to manage your relationship with your doctors.
In other ways, the book is the story of Dr. Whitehouse’s personal journey. He’s a well-respected Alzheimer’s researcher, was instrumental in developing cholinesterase inhibitors, and is active in national and international committees making recommendations on treatment of dementia.
But he eventually realized that everything we “know” about Alzheimer’s did not fit with his personal experience as a scientist, a doctor and a human being. For example, he observed that:
*Despite their disabilities, many patients who meet the criteria for diagnosis of Alzheimer’s continue to live full lives
*Each patient’s memory loss is unique, and does not necessarily fit the standard set of symptoms and progression
*The plaques and tangles pathology that defines Alzheimer’s doesn’t always match the degree of cognitive problems
*Patients respond better to treatment that takes into account the whole person, rather than treatments aimed at a pathology we don’t understand.
Dr. Whitehouse came to the conclusion that what we call late onset Alzheimer’s is really brain aging caused by a variety of factors. Given this “reframing” of Alzheimer’s, he lost faith in the promise that a cure is around the corner. “After thirty years of research and tens of billions of dollar spent, we’re not even close,” he writes. “In fact, our expensive genetic tests and neuroimaging devices have actually caused us to drift deeper into confusion….”
But if the current understanding of late onset Alzheimer’s is off-target, and we lose our hope for a cure, how do we make sense of Alzheimer’s and memory loss? How I am to understand Dad’s dementia if science can’t explain it or cure it?
“A realistic hope is better than false hope,” says Dr. Whitehouse. “Hope comes from being in the same boat as others (brain aging) rather than being in a different stigmatized boat (Alzheimer’s). It comes from telling your own story rather than waiting for some scientist to produce a cure as part of a story he or she is trying to sell. Hope comes from accepting mortality and contributing to the next generation, rather than hanging on to selfish goals.”
What if both Dad and I had taken this point of view, and accepted his “brain aging” rather than trying to figure out what was “wrong” with him? Would I have focused more on just enjoying his company? Would he have been less frustrated and embarrassed about his memory loss? Would I have been more open to accepting his mortality when he told me he’d already had a good life? I’m still trying to work out the answers to these questions.
The Myth of Alzheimer’s goes beyond questioning Alzheimer’s to questioning how we deal with aging, our approach to life and death and the legacies we’re leaving. Somewhat ironically, the book’s medical advice is much the same as the mainstream message about brain health – eat well, exercise, reduce stress and stay engaged in life. But the “reframing” from medical treatment of a disease to the larger issues of prevention, personhood, and quality of life and care makes for a very different discussion.
“Our book is motivated from a real desire to help people address their aging associated cognitive challenges,” says Dr. Whitehouse. “Current ways are not sustainable or even desirable. Our approach goes far beyond dementia. Reflect on what we say and we all have the opportunity to be better human beings that are all cognitively impaired to one degree or another but still full of life.”
This book is sure to ruffle some feathers. I don’t know if we’re ready to rethink our approach to Alzheimer’s, but I’m glad Peter Whitehouse and Danny George have started this conversation.