For nearly 7 years I watched my father decline from Alzheimer’s. It was perhaps the most difficult journey I’ve ever taken. My book, My Father’s Brain, is a memoir of my relationship with my father as he succumbed to his disease, but it is also a scientific and historical inquiry into the fragility of the brain. In the book, I set my father’s descent into dementia alongside my own journey, as a doctor, writer, and son, toward understanding this mysterious and devastating disease.
A British neuroscientist, Jebelli travels around the world to discover the latest in dementia research.
He goes to Papua New Guinea, Japan, India, and China to learn about experimental (but mostly futile) treatments, including stem cells, blood transfusions and repurposed cancer drugs.
In the end, he acknowledges how little medicine currently has to offer patients living with dementia, even as he holds out hope (far-fetched, in my view) for a cure in 10 years.
For readers of Atul Gawande, Siddhartha Mukherjee, and Henry Marsh, a riveting, gorgeously written biography of one of history's most fascinating and confounding diseases -- Alzheimer's -- from its discovery more than 100 years ago to today's race towards a cure.
Alzheimer's is the great global epidemic of our time, affecting millions worldwide -- there are more than 5 million people diagnosed in the US alone. And as our population ages, scientists are working against the clock to find a cure.
Neuroscientist Joseph Jebelli is among them. His beloved grandfather had Alzheimer's and now he's written the book he needed…
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.
Leaving Tinkertown is a romp of a memoir that takes the reader behind the scenes of Tinkertown, her father’s colorful roadside attraction in New Mexico. As Ross Ward descends into Alzheimer's, we learn what it was like growing up with this man and how Tanya’s complicated but tender history with him both repels and pulls her back home. Tanya’s writing is gorgeous, and this memoir is both vivid and heartbreaking! It’s a story you won’t soon forget.
When Tanya Ward Goodman came home to New Mexico to visit her dad at the end of 1996, he was fifty-five years old and just beginning to show symptoms of the Alzheimer's disease that would kill him six years later. Early onset dementia is a shock and a challenge to every family, but the Wards were not an ordinary family. Ross Ward was an eccentric artist and collector whose unique museum, Tinkertown, brought visitors from all over the world to the Sandia Mountains outside Albuquerque. In this book Tanya tells Ross's story and her own, sharing the tragedy and the…
With more than 6-million Americans living with Alzheimer’s, my story is a shared narrative. Because reading creates empathy, I work to widen the perspective of my writing and include voices different from my own. Thanks to neuroplasticity, healthy brains have the ability to keep changing and learning. Each one of these books offers a helpful nudge in a new direction. My essays and articles have appeared in numerous publications including the Washington Post, Luxe, and Variable West, and are listed as notable in the 2019 Best American Science and Nature Writing. I’m currently at work on a second memoir about motherhood and the way travel cultivates a willing acceptance of uncertainty.
I was a new mother when I read this Alzheimer’s memoir and immediately felt that I’d found a friend. Elizabeth Cohen is funny, lyrical, and sometimes (understandably) frustrated as she takes on the bruising balance of managing a career while simultaneously caring for her aging father and her young daughter. The book is a testimony to the healing power of story and provided a valuable model to me as I sought to make sense of my own family experience by committing my memories to the page.
'Daddy walks around, dropping pieces of language behind him, the baby following, picking them up. He asks for 'the liquid substance from the spigot'. She asks for 'wawa'. He wants a tissue to wipe his 'blowing device'. She says 'Wipe, Mummy' and points to her runny nose. The brain of my father and the brain of my daughter have crossed. On their ways to opposite sides of life, they have made an X-On his way out of life, Daddy has passed her the keys.' Soon after her daughter's first birthday, her husband walked out of their rambling old house in…
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.
Stark-McGinnis tackles Alzheimer’s of a parent, in this case, a mother. The disease is already well-progressed as we meet Cassie; her mother has already forgotten her name. Told in the present tense interspersed with a series of flashbacks to before Cassie’s Mom had the disease, we see all that has been lost. Linking memories to math, in that each can be broken down into more finite parts, Cassie draws “memory sketches” in the hopes that connecting all the dots in Mom’s life will make her remember. It doesn’t of course, but with her father, Cassie finds a path toward acceptance.
From the acclaimed author of Extraordinary Birds, a powerful story about family, friendship, and the light that can be found even in the darkest of places.
Cassie's always looked up to her mom, a vibrant woman bursting with grand ideas. Together they planned to check off every dream on their think-big bucket list, no matter how far the adventures took them. The future seemed unlimited.
But then came the diagnosis, and Mom started to lose her memories. Even the ones Cassie thought she'd never forget. Even Cassie's name.
Cassie tries her hardest to keep Mom happy . . . to…
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 explains the tight connection between Alzheimer’s disease and education, health, income, and environment, and why the rate of Alzheimer’s disease in the population actually decreased in the decades following the most important societal changes enacted after World War II. Social safety, environmental protections, and income inequality have had far greater impact than any of the pharmacological approaches ever attempted. The authors make the compelling case that brain health is intimately connected to societal health.
Have the social safety nets, environmental protections, and policies to redress wealth and income inequality enacted after World War II contributed to declining rates of dementia today-and how do we improve brain health in the future?
For decades, researchers have chased a pharmaceutical cure for memory loss. But despite the fact that no disease-modifying biotech treatments have emerged, new research suggests that dementia rates have actually declined in the United States and Western Europe over the last decade. Why is this happening? And what does it mean for brain health in the future?
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…
I am an artist and mathematical neuroscientist. I’ve spent my life cracking some of reality’s greatest mysteries, including consciousness, self-consciousness, language, music, suffering, pain, anesthesia, compassionate love, extraterrestrial communication, and autism.
This is it. The Bible of the Mind. The Codex of Consciousness. The Scroll of the Soul. Stephen Grossberg’s masterwork is a comprehensive mathematical account of human cognition.
Pick any part of the brain, any mental function—a sodium channel, a pyramidal neuron, a circadian circuit, a cerebellar lobe, audio recognition, hate, melodic preferences, linguistic meaning, throwing a spear at a target, visual memory, schizophrenia, free will—and Dr. Grossberg has put math to it. You’ll find that math in this book.
But be forewarned: this book is very, very, very challenging. The math isn’t derived from some other field of science. Because consciousness is not a subset of electromagnetism or a variety of planetary orbit. Consciousness is its own unique thing in the cosmos, and demands its own unique math.
Sophisticated, ornery math. Inaccessible math for most of us, sadly, but if you want to take a shot at the Finnegan’s…
How does your mind work? How does your brain give rise to your mind? These are questions that all of us have wondered about at some point in our lives, if only because everything that we know is experienced in our minds. They are also very hard questions to answer. After all, how can a mind understand itself? How can you understand something as complex as the tool that is being used to understand it?
This book provides an introductory and self-contained description of some of the exciting answers to these questions that modern theories of mind and brain have…
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,…
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.
Ann Campanella’s memoir details her journey through caregiving for her mother with Alzheimer’s at the same time she was struggling to start her own family. I felt it all: the anxiety, the frustration, as well as the pain, as she watched her mother decline while coping with an inability to conceive. Ann’s book reminded me to appreciate life’s joys, no matter how small, whether riding a beloved horse, marveling at a sunset, smelling a beautiful flower, or offering a simple hug.
Ann Campanella, a freelance writer and horsewoman, returns to North Carolina after a several year absence. In her mid thirties and ready to start a family, she is used to setting goals and accomplishing them. But when Ann experiences a series of miscarriages at the same time her mother shows signs of Alzheimer’s, she plunges into an emotional journey that leads her to a deeper understanding of herself and what it means to love.
"One of the best Alzheimer's books of all time." - Book Authority
As a person who has lived with chronic illness and disability for over a decade, I've often found it difficult to advocate for myself because I was afraid and because I just didn’t know that I had a right to speak up. Not just in medical settings but also with family and friends. So often, others with “authority” think they know what’s best for us, but in the end, we know our bodies best. I’ve learned to set boundaries, say no, and advocate for myself as a means of survival. These five books are wonderful examples of strong girls and young women using their voices to protect their bodily agency and build their body confidence.
Iveliz is angry and depressed, about a lot of things, including the death of her father. In an attempt to help Iveliz manage her anger and depression she sees a therapist and takes medication.
Iveliz knows taking her medications will help her, but what if the meds aren’t helping anymore? And what if seeing a therapist and talking about her problems isn’t what Iveliz wants to do? Why does no one want to listen to what she wants?
Iveliz struggles to say no and to advocate for herself and she pours all her thoughts and feelings into her journal, until she realizes that maybe using her voice is a better way to be heard. I loved the way Iveliz’s emotional journey and mental health are chronicled and treated with respect and care in this award-winning middle-grade novel in verse.
NEWBERY HONOR AWARD WINNER • In this timely and moving novel in verse, a preteen girl navigates seventh grade while facing mental health challenges. A hopeful, poetic story about learning to advocate for the help and understanding you deserve.
"Powerful." —Lisa Fipps, Printz Honor-winning author of Starfish
How do you speak up when it feels like no one is listening?
The end of elementary school? Worst time of my life. And the start of middle school? I just wasn’t quite right. But this year? YO VOY A MI.
Seventh grade is going to be Iveliz’s year. She’s going to make…
