8 books to help caregivers and loved ones better understand Alzheimer’s Disease

Alzheimer’s is a progressive disease that disrupts typical cell function in the brain causing life-changing symptoms. The leading theory is that plaques and tangles (abnormal deposits and fibers) build up in the brain causing brain cell dysfunction and resulting in cell death. Scientists believe this is the likely cause of the symptoms of dementia that accompany Alzheimer’s, like memory loss that disrupts daily life, challenges in planning or solving problems, and difficulty completing familiar tasks.

Whether you’re looking to learn more about Alzheimer’s, to add to your book club’s list, or to recommend a book to a family member, our list of books related to Alzheimer’s and dementia is sure to inspire you. Looking for insight into what it’s like to live with Alzheimer’s? Or get tips on caregiving? Or understand more of the science behind Alzheimer’s? Our list has you covered. 

1. Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer’s by B. Smith and Dan Gasby
   This New York Times bestseller is about restaurateur, model, and actress B. Smith, who was diagnosed with Alzheimer’s at age 66 but wanted to make sure to tell her story in the hopes of helping others. With her husband Dan by her side, B. tells of the challenges and the harsh realities they faced as a family during this time. Above all, it’s a story of hope and love, along with the recommendation that we keep learning even after the world seems to stand still.
2. Six Steps to Managing Alzheimer’s Disease and Dementia: A Guide for Families by Andrew Budson and Maureen K. O’Connor
   This book, by two Boston University neurologists, offers a detailed guide for families on their caregiving journey, providing guidance on Alzheimer’s topics that range from building a care team to nurturing a relationship with your loved one, to strategies for managing medications and symptoms. As the authors say, “Caring for someone with Alzheimer’s disease or dementia can be one of the most frustrating, exhausting, and heartbreaking activities that one can do — but it can also be fulfilling and rewarding.”
3. Still Alice by Lisa Genova
   Best-selling author and neuroscientist Lisa Genova tells an engaging and heartbreaking story that was ultimately made into an Academy Award-winning movie of the same name. This book sensitively and insightfully describes the journey into early-onset Alzheimer’s Disease by a 50-year-old Harvard professor, and how she and her family cope with the increasing levels of deterioration in her brain.
4. Dementia from the Inside: A Doctor’s Personal Journey of Hope by Dr. Jennifer Bute
   Jennifer Bute was a general practitioner whose patients included those with dementia. She began experiencing symptoms herself and was ultimately diagnosed with early-onset Alzheimer’s. Today, Bute sees her diagnosis as a “glorious opportunity” to help others on their own Alzheimer’s journeys. In her book, she writes about her faith and what it means to enable, rather than disable, people living with dementia.
5. Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s by Patti Davis
   The author is the daughter of former US President Ronald Reagan, who was diagnosed with Alzheimer’s in 1994. In her book, Davis offers guidance for people impacted by dementia, weaving in anecdotes from her family’s experience and from a support group called “Beyond Alzheimer’s” which she founded for caregivers. In her book, Davis, who went through her own mental health struggles simultaneously, says of her father’s diagnosis: “It was bigger than everything that I was going through and I wanted to show up for him.”
6. The Broken Jar by Daniel C. Potts
   The author is a neurologist with the VA. After his father, Lester, was diagnosed with Alzheimer’s at 72, he discovered his artistic talents at his care facility in Alabama, so that watercolor painting became an avenue for him to express his memories, his life experiences, and his frustrations. In The Broken Jar (which highlights some of Lester’s works), the author says one of the lessons he learned from his father’s diagnosis was “to look inside the person and not just see loss — deficits, disability that I’ve been trained to see as a neurologist — but to see what remains and to build on strengths that people have.”
7. Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias: 101 Stories of Caregiving, Coping, and Compassion by Amy Newmark
   The stories in this book will help you understand what someone with Alzheimer’s is going through, and how they see the world around them as the disease progresses. You’ll hear the voices of patients, caregivers, doctors, children, and grandchildren in the stories in the book – and most will remind you that you are not alone on this journey.
8. A Caregiver’s Guide to Dementia: Using Activities and Other Strategies to Prevent, Reduce and Manage Behavioral Symptoms by Laura N. Gitlin and Catherine Verrier Piersol
   This book highlights strategies for families taking care of loved ones with Alzheimer’s that can help reduce and manage typical behavioral symptoms such as agitation, repetitive questions, acting out, wandering, restlessness, hoarding, resistance, and more. The authors are scientists and clinicians in the fields of eldercare and occupational therapy and use their years of research to provide actionable tips and advice for families.

What books would you add to the list? Let us know in the comments.