Here are 100 books that American Dementia fans have personally recommended if you like
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My father was a NASA scientist during the Mercury, Gemini, and Apollo programs, so while most people knew the Space Race as a spectacle of thundering rockets and grainy lunar footage, I remember the very human costs and excitement of scientific progress. My space-cadet years come in snippets–the emotional break in my dad’s voice when Neil Armstrong hopped around the Moon; the strange peace I felt as I bobbed on a surfboard and watched another Saturn 1b flame into the sky. Later, as a journalist and author, I would see that such moments are couched in societal waves as profound and mysterious as the wheeling of hundreds of starlings overhead.
On the surface, this seems a dry treatise on the process of scientific change, but as you get into it, you encounter again and again the stories of hardheaded researchers convinced that the world explained by current theory just doesn’t make sense and shows how they were driven, often reluctantly, to make sense of things. Priestley’s and Lavoisier’s experiments are included with many others but always set within the framework of a discipline in a “crisis” that needs to be resolved.
The personal costs are not neglected–ridicule, isolation from the accepted “establishment,” sometimes far worse. Scientific progress is often portrayed as a triumph of individual imagination confirmed by wider testing and collaboration. Kuhn’s work took that self-serving myth and tossed it out the window.
A good book may have the power to change the way we see the world, but a great book actually becomes part of our daily consciousness, pervading our thinking to the point that we take it for granted, and we forget how provocative and challenging its ideas once were-and still are. "The Structure of Scientific Revolutions" is that kind of book. When it was first published in 1962, it was a landmark event in the history and philosophy of science. And fifty years later, it still has many lessons to teach. With "The Structure of Scientific Revolutions", Kuhn challenged long-standing…
I am a professor of neurology at the University of Cincinnati, interested in the many ways in which we acquire impairments in movements, in cognition, or in both. I have sought to measure these behaviors, quantify their responses to different pharmacological treatments, and determine how they inform the biology of the aging brain. In publications along the way, I have increasingly questioned how we classify neurological diseases and treat those affected.
This book offers a captivating tale of how the increasing knowledge of one disease, syphilis, created the foundations to understanding that the brain and mind are one and the same. The authors narrate the stories of patients whose “hysteria” (today referred to as functional neurological disorder) were traced to degenerative brain lesions that only belatedly were understood to be complications caused by remote infections with the bacterium Treponema pallidum. Several chapters follow the story of the important characters depicted by André Brouillet in the Une leçon clinique à la Salpêtrière (A Clinical Lesson at the Salpêtrière), one of the most recognized paintings by neurologists, as it depicts Jean-Martin Charcot, shown among many of his disciples, demonstrating a “hysteric” seizure in one of his patients. The authors illustrate how we have gotten away with conceptualizing behaviors without biological basis and put the reader on notice that “mental illnesses” are neurological problems…
In 1882, Jean-Martin Charcot was the premiere physician in Paris, having just established a neurology clinic at the infamous Salpetriere Hospital, a place that was called a 'grand asylum of human misery'. Assessing the dismal conditions, he quickly upgraded the facilities, and in doing so, revolutionized the treatment of mental illness.
Many of Charcot's patients had neurosyphilis (the advanced form of syphilis), a disease of mad poets, novelists, painters, and musicians, and a driving force behind the overflow of patients in Europe's asylums. A sexually transmitted disease, it is known as 'the great…
I am a professor of neurology at the University of Cincinnati, interested in the many ways in which we acquire impairments in movements, in cognition, or in both. I have sought to measure these behaviors, quantify their responses to different pharmacological treatments, and determine how they inform the biology of the aging brain. In publications along the way, I have increasingly questioned how we classify neurological diseases and treat those affected.
Stan Prusiner received the Nobel Prize of Medicine in 1997 for identifying what at the time was considered a novel mechanism of neurodegeneration: the prions. These “infectious proteins” were responsible for ravaging the brains of animals suffering from scrapie and mad cow disease, and of humans with Creutzfeldt-Jakob disease. Although I have come to doubt that prions are a cause of rapidly progressive dementia and may instead represent a consequence, Prusiner’s memoir is filled with moments of skepticism, self-doubt, adversity, and intellectual rivalries –the ingredients for a gripping drama in neurosciences.
A first-person account of a revolutionary scientific discovery that is now helping to unravel the mysteries of brain diseases
In 1997, Stanley B. Prusiner received a Nobel Prize, the world's most prestigious award for achievement in physiology or medicine. That he was the sole recipient of the award for the year was entirely appropriate. His struggle to identify the agent responsible for ravaging the brains of animals suffering from scrapie and mad cow disease, and of humans with Creutzfeldt-Jakob disease, had been waged largely alone and in some cases in the face of strenuous disagreement.
A fresh take on the difference between trauma and hardship in order to help accurately spot the difference and avoid over-generalizations.
The book integrates the latest findings in brain science, child development, psycho-social context, theory, and clinical experiences to make the case that trauma is much more than a cluster…
I am a professor of neurology at the University of Cincinnati, interested in the many ways in which we acquire impairments in movements, in cognition, or in both. I have sought to measure these behaviors, quantify their responses to different pharmacological treatments, and determine how they inform the biology of the aging brain. In publications along the way, I have increasingly questioned how we classify neurological diseases and treat those affected.
This collection of essays blew my mind. Researchers in a range of disciplines were asked to elaborate on why a given idea in their field should be put to rest. There is a chapter dedicated to big data, nature versus nurture, cause and effect, race, Linnaean classification, etc. The book’s essays inspired me to shape a section on “Reductionism and related ideas that will die” as part of a solicited article I wrote with Tony Lang in 2018 aiming to predict the future of Parkinson’s disease research in the 2020s (Ben Stecher credited it as his reason to relocate to Cincinnati to work with us in our CCBP study). This book is also a reminder that progress requires new ideas, and most cannot emerge without first abandoning outdated ones (as Kuhn articulated).
An idea that must die in neurology is the clinico-pathologic model of classifying neurodegenerative diseases: abnormalities on brain…
The bestselling editor of This Explains Everything brings together 175 of the world's most brilliant minds to tackle Edge.org's 2014 question: What scientific idea has become a relic blocking human progress? Each year, John Brockman, publisher of Edge.org-"The world's smartest website" (The Guardian)-challenges some of the world's greatest scientists, artists, and philosophers to answer a provocative question crucial to our time. In 2014 he asked 175 brilliant minds to ponder: What scientific idea needs to be put aside in order to make room for new ideas to advance? The answers are as surprising as they are illuminating. In : *…
An author of a caregiving memoir myself, I’m also a former magazine and newspaper editor who has had the opportunity to read and write about many topics. For the past five years, I have been a manager and director of AlzAuthors, an online global organization that offers the world’s most comprehensive collection of books and blogs on Alzheimer’s and dementia. To say I have done a lot of reading on this subject is an understatement. I’ve been honored to work with so many talented and big-hearted authors who share their Alzheimer’s and dementia experiences. Being immersed in the Alzheimer’s world through AlzAuthors has given me insight into many of the best memoirs on this subject.
I can’t even imagine having both parents diagnosed with Alzheimer’s on the same day. But Jean Lee handles this situation with grace and devotion. Through her parents’ letters, she shares their love story. Ed and Ibby have a beautiful bond as do their daughters, yet the girls face a challenging road of caregiving that is sad, humorous, and touching, but always a model for how to love well. In Jean’s book, she casts a spell of nostalgia, faith, and whimsy, pulling the reader into a circle of intimacy.
What would you do if both parents were diagnosed with Alzheimer’s?At the time of their diagnosis, Ed Church struggles to his feet, yelling, “How dare you use the A. word with me,” while Ibby wags her finger at the doctor scolding, “Shame on you.”They protect each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.”About his driving Ed defends, “I’m an excellent driver, I’ve never had an accident.” When their daughter, Rosie, finds dings in Ed’s car, he dismisses, “Someone must have bumped into me.”After Rosie moves them to assisted living, convinced they are…
Both of my parents were diagnosed with Alzheimer’s on the same day. The time period from the beginning hints of subtle oddities in their behavior and cognition, through their diagnosis and until their deaths was a decade. I worked full time as an elementary teacher during their illness and had always read to solve problems. Therefore, I sought any authors who would share their personal experiences with me. These stories sustained me. They saved me. They allowed me to know I was not alone. From that experience grew my own memoir, Alzheimer’s Daughter.
Susan Landeis dealt with rejection and jealousy from her own mom as she was a little girl and through her teenage years. What does one do when an estranged parent is diagnosed with dementia and needs care? It is a rare individual who reacts with the kindness and forgiveness of Landeis. Because of that generosity and love, or perhaps because her mother forgot the meanness and rejection she inflicted on her daughter in years past, Susan and her mom grew a beautiful relationship during those caregiving years, giving them both comfort in the end.
Susan always knew her relationship with her mother was different from that of other mothers and daughters. As a young girl, she struggled to cope with her mother's unpredictable behavior, rejection, and abandonment. At the age of sixteen, she left home and put it all behind her. Years later, her mother was diagnosed with a devastating illness, and Susan was suddenly faced with the difficult decision to care for both of her parents. In this inspiring, soul-searching memoir, Susan tells the story of a troubled childhood, her struggles as an adult, and her determination to find peace with her mother…
After Dr. Shawn Jennings, a busy family physician, suffered a brainstem stroke on May 13, 1999, he woke from a coma locked inside his body, aware and alert but unable to communicate or move. Once he regained limited movement in his left…
The inspiration to write about Alzheimer’s came from my own life. My grandfather had the disease. He and I were very close and it broke my heart when I realized I’d been forgotten. He only remembered my voice, that it sounded like a little girl he used to know. I wanted to capture the truth of that in a story. Sadly, dementia is so common, but for some reason, we don’t talk about Alzheimer’s as openly as we do other diseases. Kids need to be able to have everyday conversations about what they might be experiencing in regards to whomever they know with the disease. My hope is that books like Flowers can help.
Sticky Notes centers on a parent who has early-onset Alzheimer’s and is told from the perspective of a 10-year-old boy, Foster. The voice is a genuine one and the writing is heartfelt, as Foster compares his own forgetting to Dad’s forgetting and sometimes convinces himself that there is no need to worry. The confusion and lack of clear discussion with Foster about what is happening is a real challenge for many dealing with the disease. As the forgetting gets worse and Dad begins to change, Touchell documents the family changes that Foster and his mother go through too, with a sensitive touch.
For fans of The Thing About Jellyfish, a touching story about the power of love and family in the face of a parent's early-onset Alzheimer's disease.
Ten-year-old Foster has always loved listening to his dad's stories. But lately, Dad's memory hasn't been so great, and Mom's placed sticky notes around the house to help him. As Dad's condition worsens, it's Foster who will need to look deep into his heart and remember for them both.
Sticky Notes is a touching story about the power of love and family in the face of a parent's Alzheimer's disease, and a moving reminder…
I am a caregiver who became an author. Both my parents had dementia. I found few books written from a personal perspective to give me guidance, so the journal I kept ultimately became the book I wished I could have read during our dementia journey. The journey didn’t end for me with the death of my parents. It led me to form a non-profit with two other dementia authors. This passion project has become a global community of authors who have written about Alzheimer’s and dementia from personal experience. Now more than 300 strong, we provide quality resources for caregivers and others concerned about dementia. Learn more at AlzAuthors.com.
I was drawn in by Marianne Sciucco’s novel about a man caring for his wife with Alzheimer’s. It’s a love story between a long-married couple, one of whom has dementia. It’s about a husband’s determination to honor his wife’s request to stay in their home, even though his own health is failing. It’s about the magic of the day they “escape.” I loved this book because it showed me that love endures despite dementia; despite what life throws our way.
What if the person who knew you best and loved you most forgot your face, and couldn't remember your name? The PromiseA care facility is everyone's solution for what to do about Sara, but her husband, Jack, can't bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer’s disease. He and Sara retired years ago to the house of their dreams, and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas. Jack has made an impossible promise: He and Sara will stay together in…
An author of a caregiving memoir myself, I’m also a former magazine and newspaper editor who has had the opportunity to read and write about many topics. For the past five years, I have been a manager and director of AlzAuthors, an online global organization that offers the world’s most comprehensive collection of books and blogs on Alzheimer’s and dementia. To say I have done a lot of reading on this subject is an understatement. I’ve been honored to work with so many talented and big-hearted authors who share their Alzheimer’s and dementia experiences. Being immersed in the Alzheimer’s world through AlzAuthors has given me insight into many of the best memoirs on this subject.
Honest and humble, Vicki Tapia shares her story in Somebody Stole My Iron of caring for both parents at the same time as they descend into dementia. Despite her mother's strong personality and her father's somewhat distant and oblivious nature, Vicki reveals the real issues of loving parents – particularly her mother – who have challenging personalities. Vicki’s loyalty in the midst of difficulty is inspiring. She also shares dementia caregiving tips at the end of each chapter, which provide comfort and affirmation for others caring for aging parents.
Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved. After Vicki Tapia's mother was diagnosed with Alzheimer's disease, followed closely by her father with Parkinson's disease-related dementia, she struggled to find practical, helpful information to light her way. Somebody Stole My Iron began as a diary to help her cope, but emerged as a road map for others. It offers a glimpse into her family's life as they rode the waves of dementia, sometimes sailing, other times capsizing. This engaging memoir offers useful information from experts within the field of Alzheimer's research, personal…
I am a registered nurse, author, and dementia daughter. As a nurse and hospital case manager, I spent many years caring for people living with dementia and their families. This inspired me to write a novel, Blue Hydrangeas, an Alzheimer’s love story. I soon encountered difficulties marketing my book. I reached out to two other dementia daughters I’d met online who had also written books on the subject from personal experience and together we founded the non-profit organization AlzAuthors.com. Our mission is to carefully vet resources – stories of personal caregiving – to help busy caregivers find the information and inspiration they need for their own journeys. To date, we are 300+ authors strong.
Michael was an executive in a Fortune 500 company when he was diagnosed with early-onset Alzheimer’s at age 49. What followed was a cascade of losses: career, income, purpose. Not one to give up easily, Michael turned his efforts and energy to dementia advocacy, speaking across the country and internationally at conferences and before Congress. His book tells the story of his newfound passion and work with raw honesty.
Imagine having a mysterious illness take over your mind. Over the next 10 years, you try to navigate a health care and social system that is not equipped to address what is happening to you. As you slowly lose your ability to think and remember, you have to try to hide the losses to protect you and your family financially. You encounter doctors who are at best baffled, and order a series of nonspecific, redundant, and uninformative studies. If you want to know what it is like to walk in the shoes of one person with Alzheimer’s, read this book,…
