The Forgetting: Alzheimer's: Portrait of an Epidemic by David Shenk

The Forgetting: Alzheimer's: Portrait of an Epidemic Reviews

• 
  John Thorndike

  This is the classic text on Alzheimer’s. It’s now a decade old, but reads like it was written yesterday. Shenk tells us how the disease was discovered, how it develops in the brain and how it plays out in the daily lives of patients.
  
  I read this within a month of my father’s diagnosis of advanced second stage dementia, and I’ve never been so comforted by a book. Even now, a few years later, I occasionally take The Forgetting down from the shelf and hold it. I read a few pages. I feel secure with it, I’m in the hands of a skilled, trustworthy and empathic writer.
  
  Reading the book the first time, I was electrified to recognize in my father almost every symptom Shenk described. At the same time I was soothed, because I understood that it wasn’t my father who was so bizarre, it was the disease playing out in his hippocampus, amygdala and temporal lobes. To me it was a relief to know that his brain was going bad in an entirely common way: that he was not, if you will, a strange human being, but entirely normal for a patient with Alzheimer’s.
  
  David Shenk is the ideal journalist, sympathetic without the least hint of sentimentality. His prose is perfectly crafted, never an awkward sentence, with an ideal balance of exposition and narrative. That is, he gives us technical explanations about the disease, but we’re never far from the stories of a lively set of characters. We hear about Frau Auguste D., the original dementia patient of Alois Alzheimer, and Ronald Reagan, and Ralph Waldo Emerson and Jonathan Swift, two writers who suffered extreme memory loss and the inability to make sense of even the words they’d written themselves. It’s a richly peopled world, and Shenk makes it clear that this is a timeless disease, one that has been with us always.
  
  I was surprised by the Acknowledgments section of the book, which goes on for three full pages and names a hundred people. You can see there how much research went into the book. But while reading it, I felt as if Shenk had sat down and typed it out without the least effort. Like a great athlete, he makes the job look effortless.
• 
  India M. Clamp

  
  Often, we excogitate the brain and more specifically “Who are we?” In brief, we are the sum of our memories and connections. Within us exists a universe of systems. There is the rhythmic undulation of flowing, wet, and fluid memories vibrating and thier comingling giving rise to our ever-evolving character adapting (or not) to our personal cosmos. On a quotidian basis we ponder mortality and ways to perpetuate it. How do we prolong this?
  
  “Studies continue to suggest, with increasing confidence, that participation in hobbies and social activities may reduce one’s chances of developing dementia by as much as forty percent. Use it or lose it.”
  ---David Shenk
  
  Long-life (given our advances in medicine) is a reality and “Alzheimer’s: The Forgetting” covers an "epidemic” costing us 700 billion in the next 50 years. This book is a choleric blend of neuroscience and “Observations du patient” characterized by David Shenk. Forgetting is the onset of dementia---judgment and personality---soon after the patient slides into an incontinent, bedridden, mute and delirious trough like existence.
  
  Despite epigenetic forces, we are schooled by David Shenk to understand the brain is 3 lb. organ the size and shape of two adult fists put together. The hard cheese like consistency—of the brain---is the pinnacle of complexity and is engineered to evolve (homeostasis) as you do. Imagine a 100 billion neurons linking in an ocean of one hundred trillion separate pathways is extraordinarily rousing. Brilliant writing. Read, learn and evolve!
• 
  Erica

  A beautiful "biography" of Alzheimer's disease, if a bit outdated. I especially enjoyed the description of the trials of Ralph Raldo Emerson, Jonathan Swift, and Willem de Kooning.
• 
  Katie

  I am taking a training class for my job about Alzheimer's and I decided to read this book because I wanted more information about the disease. This book was very readable and simple to understand, but still had a fair amount of valuable medical information.
  
  In the beginning sections of the book, I kept thinking how amazing the human brain is. I guess it is really no wonder that it doesn't always hold out as long as the rest of the body. When I think about it, I am just totally in awe of the fact that all the neurons in my brain are firing in exactly the right way that I can be sitting here, typing, forming coherent thoughts, recognizing everything around me, etc. The brain is just an amazing organ.
  
  This book provided a well-balanced portrayal of the disease by alternating medical information with personal stories of individuals affected by Alzheimer's. I thought it provided a very humanizing account of the disease. For much of the book, I was depressed thinking about all of the horrible things that Alzheimer's disease does to individuals. However, the end of the book was slightly uplifting. Alzheimer's is still a tragic disease, but in the last few chapters of the book, the author really makes a case for how the disease really has some things to teach us about life and humanity and the way we care for each other.
• 
  Steven Meyers

  A few decades ago I read the late Dr. Sherwin Nuland’s informative 1994 book entitled ‘How We Die.’ One of the chapters addressed Alzheimer’s and it scared the everlovin’ bejeezus out of me. The history on my father’s side of the family is riddled with elderly ones suffering from dementia once they got into their eighties and nineties. Our dad is turning ninety this year and, fortunately, is living independently along with our eighty-six-year-old mom in their home of over sixty years. They’re still playing around with most of their marbles. I intended to revisit the topic of Alzheimer’s because of our family’s medical history and finally stumbled across Mr. Shenk’s book after all these years. Alzheimer’s is currently such a disease that, as the noted Austrian neurologist, psychiatrist, philosopher, author, and Holocaust survivor Viktor Frankl once stated we are sometimes “the helpless victim of a hopeless situation.”
  
  ‘The Forgetting’ was published in 2001 but is still very relevant today. It deals with the topic in a gentle informative manner. The book is broken up into three sections; the early stages, the middle stages, and the end stage. Mr. Shenk does not write in heavy technical jargon and avoids any of the New Agey style bromides. It is a small book at 261 pages in the paperback edition. ‘The Forgetting’ is based upon solid science. It also provides many examples of people at different stages of the disease. It was easy to connect with the people’s struggles, this includes the family caregivers. The horrible situation is ripe for potentially fracturing families. ‘The Forgetting’ explains about the creation of support groups; our brain’s complexity and how memory works; the history of Alzheimer’s; the nutty superstitions, junk science, and false cures that are out and about; and helpful tools for diagnosing as well as caring for loved ones. The author highlights the mental deterioration of such notables as Ralph Waldon Emerson, Willem de Kooning, and Ronald Reagan. Each chapter begins with either a victim or caregiver briefly explaining their struggles with different stages of the disease. Mr. Shenk also talks about a four-and-a-half-day Alzheimer’s conference he attended; the ethics and practices of scientific advancement; some oddly unexpected benefits in contracting the disease; and he concludes with a philosophical lecture on the nature of mortality.
  
  ‘The Forgetting’ may make you appreciate what you’ve currently got upstairs in the brain department as well as instructions and expectations on how to manage Alzheimer’s for (god forbid) yourself or loved ones. Mr. Shenk spent four years doing research and writing his book and states, “…it’s worth noting that, personally, I migrated over several years’ time from morbid fascination and dread of Alzheimer’s to a new kind of peace and reconciliation.” The author’s book also had the same affect on me. ‘The Forgetting’ was a godsend. However, based upon his descriptions in the book, if there is such a thing as reincarnation, I sure as hell don’t want to come back as a lab mouse.
  
• 
  Heather Hunter

  “To exist alongside the frighteningly unknown is often simply intolerable. In order to cope, we all need some comprehensible grasp of events outside of our control, whether or not the interim explanation turns out to be true.”
  
  I found out about this book through the Podcast by the same name with the author of this book, David Shenk, and Gregg O’Brien, who has early onset Alzheimer’s.
  
  This book was tough to open and, at times, tough to turn the pages. As the book progresses, so does the disease. It was written in a way that is easily understandable, explained with science in a way that makes you nod in understanding as opposed to confusion.
  
  Again, quoting the author because he says it best, “I understand that, through no particular actions of my own, this book is a totem.
  
  “It is a concrete representation of a disease that can never really be seen.
  
  “Opening the book, one fears, is a tantamount to looking straight into the face of Alzheimer’s- and perhaps to one’s own dark future.
  
  “The fear of Alzheimer’s is the fear of losing your identity while your healthy body walks on into oblivion.
  
  “It is the fear of becoming a ghost.”
  
  Most importantly, “CONVERSATION WILL HELP US CONQUER IT.”
• 
  Anya

  Very strong, soulful and patient writing on the subject. Structuring the story how he did was masterful (Early, Middle & End Stages). 'A meditation' is right.
  
  I came into this knowing almost nothing, having watched Away from Her (2006) recently and that's about it. And I walked away knowing a lot of the map/ the guide (which can lead me further through the territory, if the need arises).
  
  Re: the epilogue, it may have been easier for me to pick up and read this book (to "stare into the abyss") than for others. I have no one currently in my life who is affected by Alzheimer's. I do wonder if those with Alzheimer's would have been better off practicing meditation in their earlier adult lives, to learn to not fear the disorientation. I want to see studies of monks with Alzheimer's.
  
  The only thing I'm sad to see (but it was written in early 00's) is the perpetuation of the "people used to die in their 30s & 40s!" myth. Average life expectancy doesn't mean what it seems to at first glance, you have to take infant mortality out of the picture first. And the funny thing is the author goes to list a number of hints that people used to live decently long lives (maybe not into their 80s/ 90s, but at least 60s/ 70s). Plenty of the figures he mentions pre 20th c are shown to live 70+ years.
  
  "Given [the myth], perhaps the most remarkable thing about the history of senile dementia is that it has been so conspicuous. In practical terms, it was a hidden disease with very few victims before the twentieth century, and yet references to senility are strangely ubiquitous throughout recorded history [...] The question is, Why was senile dementia such a popular topic when the sufferers were so few and its practical impact on society was minimal?" (pp. 165-166) Well, the reason is there weren't quite as 'few' people with dementia as he believes.
  Confirmation bias has nothing on this thinking lol.
• 
  Andrea

  Far better than I expected! I went in expecting a relatively dry look at the particulars of Alzheimer's. What I got was a deeply literary and philosophical exploration of the disease. This book covers the specifics of disease progression and scientific advancements (up to about 2000 just before the book was published) but what impressed me most was the look at the experience of Alzheimer's and its connection to the core of human experience. On the one hand this is a horrifying look at a disease that takes everything, but on the other is a hopeful exploration of what it is to make meaning out of suffering and to know what it is to be fallibly human. Would be five stars except it could use an update now as it's over 20 years old. I was a bit devastated to find that the promising scientific advances outlined here have not played out in reality. We have little more to battle Alzheimer's with than we did 20 years ago. The prognosis remains about the same. I didn't expect to be really riveted by this book, but I couldn't put it down. Shenk doesn't spare the reader the horror of Alzheimer's but he also places it in the context of human experience in a way that will likely bring at least a little peace to those facing a diagnosis for themselves or their loved ones.
• 
  Stephen

  An informative and engaging look at the long history of what we now know as Alzheimer's, a medical issue that promises to continue growing as a public health problems as our elderly population increases. Shenk is as adept at telling stories from ancient and more recent history of notable people who clearly suffered from Alzheimer's (including the doctor for whom the disease is named) as he is at summarizing the state of the research at the time the book was written. Alas, an update is needed as progress has been made since 2002 though there is still no cure in sight. Still well worth reading for the historical insights and introduction to numerous people who have Alzheimer's, are researching it or, in a few cases, both.
• 
  Jennifer

  I wish I didn't have cause to read this book, but I am also glad that I ended up braving the first page-- and then finding myself completely sucked in to this moving "biography of a disease". Shenk somehow manages to write about Alzheimer's/dementia/senility in a way that manages to be bleak and comforting at the same time, with such profound gentleness and respect for the power of mortality and this specific road towards it.
  
  Even with the historical accounts and detailed descriptions of what happens during the early, middle, and late-stages of the disease, this book ends on a hopeful note-- not in the promise of a cure, but in the humanity that is revealed through the guarantee of death. There are entire sections and chapters where Shenk thoughtfully contemplates and explores the nature of dying and how the human body and modern advances and comforts have really pushed us past our natural limits; I never thought about how our bodies are like racecars built to last only a certain number of miles, but the analogy (much better written in the book!) is really provocative and rings true.
  
  Then there's the vignettes that pop up every so often of the conference in Taos, and how the stereotype of the science community as mild-mannered nerds is really just a smokescreen covering the political and capitalistic nature of the field. The real-life accounts of caregivers that are sprinkled throughout are heartbreaking and effective, and hands-down my favorite "character" (if I can call him that) is
  Morris Friedell. What a trip that must have been for him to process his own decline with such grace and dignity, in the public eye and on his own terms.
  
  The urgency with which I read this is paralleled only by the time I found out I was pregnant with my first child, voraciously consuming all the information I could get my hands on to prepare me for life as a parent. I suppose it is fitting, then, that as I looked to books at the beginning my journey of "conventional parenting" I am now doing the same as I start this long path of "reverse parenting". I feel less alone, more informed, and continue to be in shock over how terrifying this disease is that I am watching play out in real-time with my father.
  
  This book may be reaching a quarter of a century old, and yet I am so glad that it exists as a resource for people who need its unvarnished truth, comforting reassurance, and compilation of resources; I have a plethora of books on hold and tabs pulled up online with so much information to continue learning on how to navigate this with my parents. (Also, I am mostly surprised by how prevalent this disease seems to be, which begs the question: who isn't going to get some form of dementia when they're older? My goodness, the roster of famous names is stacked, much less the everyday, ordinary lives that are touched by this.)
• 
  So-yee

  Great resource for the historical scientific context of Alzheimer’s. I enjoyed the author’s choice to mirror the progression of the disease with the sections of his book. By weaving the chronology of discoveries and controversies with personal experiences by those with Alzheimer’s and their loved ones, the book felt both easy to read and chock full of well researched perspectives. I was pleasantly surprised by the philosophical discussion throughout on memory’s essential role in our identities and relationships. Though not a light topic, the author balances difficult truths with the momentum of our progress in understanding this disease and, consequently, shedding light on life’s meaning.
• 
  Colleen Manning

  Lots of scientific, anecdotal, and literary information about Alzheimer's in this book. I gained insight into the disease and its history, the research up until the publication date of 2003, and how Alzheimer's (and dementia in general) affects those who experience it and those who care for them. I would rate it higher if the last chapters had been more organized. I can't quite put my finger on it, but the focus of the book seems to scatter toward the end. The book is worth reading, however, for all the insight provided in the better chapters.
• 
  Sue

  The only reason that I'm rating this book so low is that, as of the current time, it is dated. If an updated edition of the book is released, then by all means, buy it, because the juxtaposition of patient's stories and science is well done. As it is, the very saddest thing in the book is that, 19 years ago when it was published, medical science thought that a miracle drug was within 20 years of completion. Sadly, that prediction has not come true.
• 
  Avery Chadd

  Read this for a class on dementia. Very informative (but presented in an interesting, not too fact-heavy way), and gave me an entirely new outlook on dementia that I appreciate much more. I would recommend this book to anyone genuinely interested in learning more about Alzheimer’s!
• 
  Eric Satlow

  This was just a well written book. Shenk interweaves the story of the disease, the science (at the time), and the human experience. The book is just a pleasure to read and obviously, at the same time, in many places, terrifying.
• 
  Sheila Garry

  Re: Alzheimers
  
  Good to know my husband is in good company with Ronald Regan, Emerson, Jonathan Swift, and Fredrick Law Olmsted.
  
  Just didn’t like the old time references to these folks. I wanted something more timely.
• 
  Debbie King

  It has taken me 3 years to read this book. Not because it isn’t good but because it was painful at times to read what is to come in the life of someone I love dearly. However, I am glad I read it because I now have a much stronger framework for understanding and caring for my loved one.
• 
  Raluca N.

  Very interesting, powerful and well written. I enjoyed the stories about the celebrities suffering from Alzheimer’s.
  I somehow expected more, but don’t know in what sense:) Nevertheless a very passionate reading.
• 
  Susie Turnbull

  Actually read the version entitled "understanding Alzheimer's: a biography of a disease" which I guess was an earlier version. Not an easy read, but with accessible science for the non-scientific, and miniature portraits of victims which I could usefully relate to.
• 
  Bram

  Equal parts fascinating and terrifying. I got a little lost in the scientific technicalities at times, but even for a non-science layperson like myself it was a brilliant read.
• 
  Lindsey

  A must read for anyone who has dealt with Alzheimer’s. Very well written look into the history of the disease and it’s effects.
• 
  Liz Yerby

  Helpful only a little deeply sad
• 
  Cristina Gabriela Banyai

  Not a classical text book about Alzheimers but a full research and historical documentation of the disease and its symptoms.
• 
  Signe Mežinska

  A 'biography' of Alzheimer's disease - excellent and rich in details.
• 
  Joe Wallace

  A must read for anyone trying to learn more about Alzheimer's and its complexities. A fascinating read and invaluable resource.