As an educator, author of children’s books, and caregiver of a loved one with dementia, I felt that I had to write a story about the disease from a child’s point of view. When I became a caregiver, I was struck by the lack of information for children and the misconceptions of the public about the disease. I wanted to create a story that reassures children and gives them guidance on how they can help be a caregiver. I added the Author’s Note to provide accurate information to adults so that more people are aware of the signs of dementia and to build understanding and compassion.
This sensitive, charming book shows how a child learns about what is going on in her granny’s brain.
It addresses the emotions that a young child may feel when they witness confusing changes in a loved one’s behavior. This story provides a wonderful opportunity to discuss dementia and what to do if a child has concerns or questions.
Are you looking for a picture book to talk about dementia or Alzheimer's with a child? This Alzheimer’s book for children explains Alzheimer’s dementia in kid-friendly terms. The book presents memory loss in an easy-to-understand narrative.
Boys and girls alike will benefit from this “must have” children’s read. Alzheimer's has an impact on families around the world. This book allows a family to face this challenge together and make the most of every available moment.
In Granny Needs My Help: A Child's Look at Dementia and Alzheimer's the main character Zéh is excited, happy, and challenged as she helps and…
Family history has always fascinated me. I didn’t want mine to be buried with my loved ones. So, out of curiosity, I asked relatives lots of questions. If unsatisfied, I sought answers elsewhere. I traveled as far as Celle San Vito, Italy, where my grandfather was born, to solve a one-hundred-year-old mystery, and I filmed it for others to enjoy. I’ve memorialized momentous family events in poems, handmade greeting cards, memory books, screenplays, a documentary, and now, in my memoir A Cup of Tea on the Commode. The books on my list are about “family.” I’ve been moved by each, and I hope they move you as well.
Amy’s story is filled with many welcome laughs to break up the many dramatic moments. And I thank her for that.
It’s a beautiful yet tragic love story. After a terminal diagnosis, her husband chose to leave this world with dignity. Amy supports his decision, knowing she’ll spend the rest of her days alone. It raises many questions. “What would I do in this situation?” Could I make the same sacrifice? Could I support my spouse if she chose the same?
I love that we are with them every step of the way. In our country, why can’t we decide how and when to leave this world when faced with a terminal diagnosis? We do this with our pets. I don’t know why we can’t do this for our loved ones instead of draining them of their dignity and the family of their finances.
A poignant love letter to Bloom's husband and a passionate outpouring of grief, In Love reaffirms the power and value of human relationships.
In January 2020, Amy Bloom travelled with her husband Brian to Switzerland, where he was helped by Dignitas to end his life while Amy sat with him and held his hand. Brian was terminally ill and for the last year of his life Amy had struggled to find a way to support his wish to take control of his death, to not submerge 'into the darkness of an expiring existence'.
I have no wilderness survival skills and certainly no wish to be thrown into any of the scenarios in the books I’ve recommended. What I do have is great empathy for those who struggle to survive loss—in whatever form it might come—be it loss of home, or security, or family. I know what it is to struggle through darkness and survive what I would have previously thought “unsurvivable.” That’s why two of my middle grade books, but especially MacKenzie’s Last Run, are about speaking up when you’re hurting or frightened. Lost in the dark woods or lost in grief–it’s all ultimately about survival.
I confess, I wasn’t sure I was going to enjoy this novel. I began reading it primarily to see what was percolating in slightly younger middle grade titles and in particular in books that are rooted in stories about differently-abled characters. Was I ever delightfully surprised when I fell in love with Ellie! I thought the novel was going to be about a lot of mean treatment by kids at school, but in truth, there wasn’t nearly as much of that as I expected (which was an enormous relief!). If you’re thinking, wait, I thought this was going to be a novel about survival, I’m here to tell you that every single day in Ellie’s life is its own survival story.
Surviving being left out of nearly all the activities the rest of the kids find fun; surviving the humiliation of having an aide take her from class to class,…
"A big-hearted story that's as sweet as it is awesome." -R.J. Palacio, author of Wonder "An honest, emotionally rich take on disability, family, and growing up." -Kirkus Reviews (starred review)
In the tradition of Wonder and Out of My Mind, this big-hearted middle grade debut tells the story of an irrepressible girl with cerebral palsy whose life takes an unexpected turn when she moves to a new town.
Ellie's a girl who tells it like it is. That surprises some people, who see a kid in a wheelchair and think she's going to be all sunshine and cuddles. The thing…
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.
When 68 year-old Gregory Tate is diagnosed with Alzheimer’s, his family members reckon with the past and try to move toward an unexpected future with love and honesty. This beautifully written novel offers readers a chance to see the crisis from varying points of view and encourages empathy for every member of the family. In addition, Golden works to raise awareness of the way Alzheimer’s disproportionately affects Black and Latino communities. African Americans are more than twice as likely as whites to develop the disease, and yet, are gravely underrepresented in research and clinical trials. Part of a diverse chorus represented by #AlzAuthors, Golden is a vital voice to follow.
A 2018 NAACP Image Award nominee and an NPR Best Book of 2017, a moving African-American family drama of love, devotion, and Alzheimer's disease.
Diane Tate never expected to slowly lose her talented husband to the debilitating effects of early-onset Alzheimer's disease. As a respected family court judge, she's spent her life making tough calls, but when her sixty-eight-year-old husband's health worsens and Diane is forced to move him into an assisted living facility, it seems her world is spinning out of control.
As Gregory's memory wavers and fades, Diane and her children must reexamine their connection to the man…
I’m a physician and a writer. Together, they create a matrix of practice, research, and writing. I care for patients at the Penn Memory Center and am a professor at the University of Pennsylvania, where I teach and study topics at the intersections of bioethics, aging, and the neurosciences. I wrote The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and essays for The New York Times, The Washington Post, Forbes, The Hill, STAT, and The Philadelphia Inquirer. I raise whippets, and I’m a passionate reader of the physician and poet John Keats.
This first-person account of living with a biomarker-defined diagnosis of Alzheimer’s disease is a clearly written story of two very distinct, even antagonistic experiences. There’s the highly subjective experience of being a patient and the highly objective experience of being a physician who has diagnosed and cared for persons with the same disease. In one book is one narrative of two perspectives embodied in one person. The result is an unadorned account of what it’s like to lose one’s mind just a little bit at a time. Case in point is his account of apathy. I’m routinely prescribing this book to my patients.
Dr Daniel Gibbs is one of 50 million people worldwide with an Alzheimer's disease diagnosis. Unlike most patients with Alzheimer's, however, Dr Gibbs worked as a neurologist for twenty-five years, caring for patients with the very disease now affecting him. Also unusual is that Dr Gibbs had begun to suspect he had Alzheimer's several years before any official diagnosis could be made. Forewarned by genetic testing showing he carried alleles that increased the risk of developing the disease, he noticed symptoms of mild cognitive impairment long before any tests would have alerted him. In this highly personal account, Dr Gibbs…
Like the Bach sisters in my novel Things We Do For Love, my sisters and I have cared for our mother, who battles Alzheimer's. Witnessing her transformation from a vibrant powerhouse to someone resembling the Walking Dead has been heart-wrenching. Despite the emotional rollercoaster, this journey has deeply connected us with our mother. Delving into the depths of her being has been a privilege, offering profound insights into her true essence. This challenging experience has unfolded as a disguised blessing. In this journey, we've discovered the beauty of unconditional love that binds our family together. It reflects the central question of my novel: What truly makes a happy family?
Receiving a dementia diagnosis at just 58 years old can be paralysing, but Wendy Mitchell chose a different path. Instead of preparing for the end, she embraced life with newfound determination.
Wendy became a passionate advocate and speaker for dementia awareness. Her remarkable journey includes earning two honorary doctorates and achieving many of her life's dreams, including becoming a published author to share her deeply personal story.
With engaging wit and unwavering courage, Wendy candidly narrates her daily battle with the illness. Her story is both heartwarming and inspirational, as she shows us that despite the challenges, dementia can also bring unexpected gifts alongside sorrow.
Wendy's character is endearing, and her resilience shines through, leaving readers with a profound sense of hope and a deeper understanding of the human spirit in the face of adversity.
THE RICHARD AND JUDY BOOK CLUB PICK
THE SUNDAY TIMES BESTSELLER
A BBC RADIO 4 BOOK OF THE WEEK
CHOSEN AS A 2018 SUMMER READ BY THE SUNDAY TIMES, FINANCIAL TIMES, DAILY TELEGRAPH, THE TIMES AND THE MAIL ON SUNDAY
'Revelatory' Guardian
'A miracle' Telegraph
'A landmark book' Financial Times
Brave, illuminating and inspiring, Somebody I Used to Know gets to the very heart of what it means to be human.
What do you lose when you lose your memories? What do you value when this loss reframes how you've lived, and how you will live in the future? How…
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.
Gerda Saunders was diagnosed with cerebral microvascular disease, the leading cause of dementia after Alzheimer’s disease, a few days before her sixty-first birthday. This forced her to confront her mortality and to write an end-of-life plan she could live with. Gerda is a brave, inspiring woman. Her book is a rich, thoughtful accounting of life with dementia.
A "courageous and singular book" (Andrew Solomon), Memory's Last Breath is an unsparing, beautifully written memoir -- "an intimate, revealing account of living with dementia" (Shelf Awareness).
Based on the "field notes" she keeps in her journal, Memory's Last Breath is Gerda Saunders' astonishing window into a life distorted by dementia. She writes about shopping trips cut short by unintentional shoplifting, car journeys derailed when she loses her bearings, and the embarrassment of forgetting what she has just said to a room of colleagues. Coping with the complications of losing short-term memory, Saunders, a former university professor, nonetheless embarks on…
Children’s stories about memory loss, Alzheimer’s, and dementia resonate with me because I know firsthand how difficult it is to care for someone with this disease. My Aunt Luella had Alzheimer’s, and I cared for her in my home. When my aunt no longer remembered me, my heart ached. I felt hopeless, afraid. I can only imagine how difficult it is for a child to watch as a beloved grandparent forgets them. I found these five books to be helpful and inspiring. They offer hope. They embrace the love that still exists.
Ice Cream with Grandpa is about the love between a child and his Grandpa.
The child tells the story beginning with the first time his Grandpa gave him ice cream. Their love of ice cream bonds them, but they also enjoy gardening, and walks in the park. When Grandpa moves to an apartment, it took some adjustment. What helped was the ice cream parlor nearby. Grandpa eventually goes into a memory care home.
The child fears Grandpa won’t remember him. His mom explains that Grandpa is still Grandpa. They can still enjoy spending time together. On Grandpa’s last day in hospice, they eat ice cream. Grandpa passes, but the child continues to remember their love each time he eats ice cream.
This story moved me so much that I cried. I love that this book includes a Guide for Parents and Caregivers: Tips for Talking with Children about Dementia, Hospice,…
After his beloved grandpa's health declines and he receives a diagnosis of dementia, a grandson must navigate the changes in their relationship. Through it all, he learns that Grandpa is still Grandpa, and their bond deepens and sweetens through a shared love of ice cream.
Ice Cream with Grandpa is a loving, tender picture book that gently explores the topics of dementia, aging, and loss. Written from a child's point of view, it chronicles the changes in their relationship as his grandpa moves to assisted living, then memory care, and eventually hospice.
By Andrew E. Budson and Maureen K. O'Connor
Author
Why are we passionate about this?
As a neurologist and neuropsychologist team who have spent their entire clinical, teaching, and research careers focused on individuals and their families experiencing memory loss, Alzheimer’s disease, and dementia, our goal is simple. We want to empower individuals and their families with the tools they need to manage memory loss, Alzheimer’s disease, and dementia. We work to balance pharmacological and nonpharmacological management, as well as the needs of the individual with those of their family. Reading books like the ones in our list plus articles in medical journals keeps us current with the progress in the science of dementia and the humanity of individuals and families living with the disease.
First, this book provides a wonderful history of the important discoveries of the different aspects of the disease. You also learn the stories behind many aspects of the disease that are now taken for granted—even with our 25+ years of treating people with this disease and conducting research to understand it better, we learned a lot. Dr. Karlawish also explains why research into dementia languished for more than 50 years. Finally, he raises many thought-provoking ethical issues that people with dementia, doctors, and society will need to wrestle with if we are going to solve “The Problem of Alzheimer’s.”
A definitive and compelling book on one of today's most prevalent illnesses.
In 2020, an estimated 5.8 million Americans had Alzheimer’s, and more than half a million died because of the disease and its devastating complications. 16 million caregivers are responsible for paying as much as half of the $226 billion annual costs of their care. As more people live beyond their seventies and eighties, the number of patients will rise to an estimated 13.8 million by 2050.
Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer’s from its…
During my decades of working with caregivers as a dementia care expert, I have heard many accounts of what the experience is like—from the sad and hollow to experiences rich in significance. Everyone faces obstacles when caring for a loved one; some of these obstacles come in the form of uncomfortable or painful emotional histories or past unresolved conflicts. After each opportunity to raise awareness and understanding about how dementia impacts individuals, their families, and their communities, I have been gratified to witness enhanced feelings of hope and comfort for all involved. It is my hope that through this book I will enter your home or your professional caregiving setting and work alongside you.
The 36-Hour Day is a comprehensive guide for caregivers that is often recommended by physicians to the families caring for a loved one with any cause of dementia symptoms or cognitive decline. I found the information provided very practical on the medical, legal, financial, and emotional aspects of caring for an individual presenting any level of dementia symptoms.
The clinical insights provided were very helpful, and the information for the caregiver throughout on the value of accessing outside help is such an important reminder for them to not try and navigate this dementia care journey alone!
Combining practical advice with specific examples on how to cope with the challenges associated with caring for a loved one with dementia symptoms make this an excellent guide for the family caregiver.
Through five editions, The 36-Hour Day has been an essential resource for families who love and care for people with Alzheimer disease. Whether a person has Alzheimer disease or another form of dementia, he or she will face a host of problems. The 36-Hour Day will help family members and caregivers address these challenges and simultaneously cope with their own emotions and needs. Featuring useful takeaway messages and informed by recent research into the causes of and the search for therapies to prevent or cure dementia, this edition includes new information on * devices to make life simpler and safer…
