There’s power in the written word, particularly in reading stories and books that convey a shared experience, shedding light on the ways in which we might, in our own lives, cope with a challenge, heal from a loss or trauma, or become more informed before making difficult decisions for ourselves or for a loved one. All of these are reasons we might turn to reading, both fiction and nonfiction, about how other people navigate a diagnosis of dementia or Alzheimer’s disease.
Several authors have written about dementia and Alzheimer’s disease, exploring how to come to terms with the diagnosis, tips for seeking care, and finding hope and meaning in the days that remain to be lived.
Below, we highlight a few of these authors and their memoir, novel, or non-fiction ‘practical guide.’ Not just for adults, you’ll find books that can be helpful for young adults and children who will also need support as they witness mental decline in a beloved family member.
Novels
Conversations with My Mother by Ronald-Stéphane Gilbert is set on the Maine coast where Yvette Allaire has lived her life. As she succumbs to dementia, her nomadic son and acerbic daughter attempt to cope. The novel draws parallels between the erasure of memory brought on by the illness and the deterioration of Maine’s once idyllic coast. It’s a deeply moving story about the ways in which dementia touches the lives of family members, bringing them to find hope in the present moment—for there is no other moment in time when losing a loved one to dementia.
Still Alice by Lisa Genova is a remarkable novel about Alice Howland’s rapid spiral into Alzheimer’s disease at just 50 years old. A Harvard professor with everything going for her, Alice must re-evaluate everything in her life—work, family, relationships, identity—and find her new place in the world, while being still Alice. Genova, who lives in Massachusetts, is a Harvard trained neuroscientist, who has written several novels dealing with the mystery of memory—how it is formed and what happens to people’s lives as it slips away.
Nonfiction
The Inheritance Drawing from several years of in-depth research, Boston-based journalist Niki Kapsambelis tells the story of Alzheimer’s through the humanizing lens of an ordinary family made extraordinary by both their terrible circumstances and their bravery. The DeMoe family has an inherited genetic mutation that causes Alzheimer’s in one hundred percent of cases and has a fifty percent chance of being passed on to future generations. The DeMoe’s story is intertwined with the dramatic narrative exploring the cutting-edge research looking for a possible cure and an in-depth account of the physicians spearheading this groundbreaking research.
My Father’s Brain: Life in the Shadow of Alzheimer’s by Sandeep Jauhar, M.D. is a deeply affecting memoir of the author’s father’s descent into dementia. With humility, humor, and heartbreak, Jauhar, a practicing cardiologist based on Long Island, explores the moral and psychological concerns that arise when family members must become caregivers, when children’s and parents’ roles reverse, and what it means to be oneself. Throughout we gain insight into why the brain and memory degenerate with age, the bioethics of research, and how researchers, doctors, and caregivers are left to confront with this devastating illness.
For Young Readers
Cassie and the House of Mirrors, a graphic novel by Dean Stuart depicting the enduring bond between a grandfather and grandchild as the grandfather succumbs to dementia. With sensitivity and care, the books takes readers on a journey into the mind of Alzheimer’s When Cassie’s grandfather wanders off, sets out to find him but instead finds herself in “grandpa’s memory place”—a mysterious place not unlike a house of mirrors or a Salvadore Dali painting, which gives Cassie access to her grandfather’s memories and state of mind. Not merely story, the graphic novel is informative in an age-appropriate way allowing Cassie to appreciate her grandfather’s life and understand him as he grapples with dementia.
A Loved One with Dementia: Insights and Tips for Teenagers by Jean Rawitt gives young adults insight into what dementia is and offers meaningful ways for continuing to have positive interactions with their loved one. With thoughtful guidance from professionals and glimpses into coping from other young adults who have experienced dementia in a loved one, this is a wonderful guide helping young people cope with the mix of difficult emotions that arise when a family member is losing their memory.
Additional book titles and lists
The Complete Family Guide to Dementia
Auntie P, Music & Me by Pamela Krist Atwood
Dementia Action Alliance Reading List
Books to help children understand dementia
