I’d planned on reviewing a few different books on Alzheimer’s disease today, but one struck me as so riveting and essential to thought on this topic that it overwhelmingly merited it’s own distinct post. The refreshing and future-changing thoughts of the author, Dr. Whitehouse, in their holistic framework, spark an incredibly important expansion to conventional thought in the field and how we will shape dementia care.
The Myth of Alzheimer’s, by Peter J. Whitehouse, a geriatric neurologist, does not set out to prove that AD doesn’t exist, as you might guess from the title. Instead, the author continually provokes the reader to think outside the box by challenging mainstream medical and pharmaceutical philosophy regarding dementia. He dares us to depart from conventional thinking and recognize that each person affected is always unique, larger than his or her disease symptoms, and ever evolving and coping in ways that may be quite healthy, even during a decline that may look disconcerting at best from the outside.
I loved that Dr. Whitehouse takes nothing for granted in his thinking about aging, and has blatantly spoken out against the powerful institutions that have funded and supported his career, including medical associations and pharmaceutical companies. He describes a major change among the latter in the late 90’s. Drug companies up to that point had come to him to capture his views as an expert in the field, to apply it to their work with pharmaceuticals accordingly, to shape their views and assumptions. After the late 90’s, Whitehouse has seen a complete reversal, where such companies feel their job is to first create a product to sell, and then come to experts like him to shape HIS view, which he finds both disturbing and unethical.
Speaking of ethics, Dr. Whitehouse blew me away, almost to tears, when he spoke about testing new FDA approved drugs on himself, not an AD sufferer, to better understand the way they might affect his vulnerable patients. For those of us who struggle with dementia personally or in the family, one of the hardest aspects can be conveying to doctors how significant and life-impairing drug side-effects can be. Can you imagine your prescribing doctor having the compassionate audacity to offer to try a few doses of a medicine of concern to see what you’re going through?
Here are some of the highlights in the book I appreciated that we can never hear enough:
- The disease is never bigger than the person and rarely accurately describes what is truly going on, in all her/his human complexity. Does giving yourself or your loved one the name of a dementia-related disease help quality of life in the long run, or does it squelch and insult the vitality of a unique and continuing life? Such labels may provoke undo suffering and can even cause suicidal thoughts in previously coping individuals.
- Accepting and adapting to dementia may be a wiser strategy than fighting it.
- Dementia is not a loss of self, but a change of self.
- Consider engaging the whole aging person rather than treating their aging brain pharmacologically.
- “Studies have consistently shown that the very act of going to see a doctor has therapeutic benefit, and that ongoing interaction with medical personnel can improve clinical outcome even when no biological treatment is involved.” Whitehouse, p.136
Whitehouse speaks for a gentler, deeper, more thoughtful, and thus overall smarter approach to dementia symptoms, questioning much of our anxiety, impatience, and seduction by scientific “breakthroughs” and headline hype.
“Because our standard one-hundred year old medicalized myth of Alzheimer’s causes us to interpret the waning period of a person’s cognitive vitality as a tragic loss of self, we reflexively impose suffering and woe onto loved ones who are succumbing to the neurodegenerative process when they may actually be moving closer to a state of inward calm and simplicity. Families often fail to find redemption and meaning in the gradually changing state of their loved one. We change in every stage of life, and progressive dementia actually creates the opportunity-difficult as it is-to deepen relationships and re-embrace a familial dependence that our fast-paced lives often fracture.” (Whitehouse, p.28)
“It creates an interdependency that may not have existed before, an opportunity to return kindness, compassion, and warmth to our parents in their time of need. And if our relationship was strained, late-stage brain aging may even present an opportunity for reconciliation and redemption.” (Whitehouse, p.28)
Especially exciting to me was to discover that the author had helped to collaboratively develop the world’s first community-based intergenerational charter school, The Intergenerational School. http://www.tisonline.org/
The book is densely packed with intelligent, research-based commentary on many other issues I don’t have space to address in this post, including genetics and bioethics, prevention, early detection, navigating the doctor’s visit, and using holistic therapies.
If you were lucky, and unlike me discovered this book when it first came out a few years ago. If not, it is still ahead of our times and our thinking on aging, and worth many rereads. If I were to choose one non-fiction book to read this year on aging and dementia, The Alzheimer’s Myth, would be my top pick so far.