Alzheimer’s and Dementia Books: 16 Best Reads for Family Caregivers

This is the first of a few appearances in our list by author Lisa Genova, who holds a doctorate in neuroscience from Harvard. Her novel “Still Alice” depicts Alice Howland, a linguistics professor at Columbia University who leads a fulfilling life in New York City and is diagnosed with Alzheimer’s disease at age 50.

Adria Thompson, a Certified Dementia Practitioner and speech-language pathologist, highly recommends “Still Alice” for dementia caregivers.

“This book provides a great opportunity for caregivers and society in general to get a taste of what the experience might be like from the person living with it,” says Thompson, noting that Genova’s fictional first-person account of dementia is both vivid and rare. “The author spent a lot of time with people with dementia and is very accurate in her descriptions of what is happening.”

There’s also a 2014 film based on Genova’s novel starring Julianne Moore, who won an Academy Aware for her portrayal of Alice Howland.

Thompson raves about Genova’s work in general: “All of her books are fantastic and represent characters with neurological conditions.”

Another novel by Genova, “Inside the O’Briens” takes on Huntington’s disease and its effects on the O’Brien family. Joe, a police officer in his 40s and the patriarch of the family, receives a Huntington’s diagnosis, and his four adult children weigh the option of taking a genetic test that will reveal their chances of getting the disease.

Thompson also highly recommends “What If It’s Not Alzheimer’s? A Caregiver’s Guide to Dementia” by Gary Radin, his mother Lisa Radin, and the late Dr. John Q. Trojanowski, whose expertise included genetics and neurodegenerative diseases at the University of Pennsylvania’s Perelman School of Medicine.

“I love this book,” says Thompson. “It specifically looks at frontotemporal dementia and has chapters written in collaboration with many different medical professionals, including physical, occupational, and speech therapists. It is a great book for those loving someone with frontotemporal dementia (FTD) because their condition can often feel isolating, compared to those with Alzheimer’s.”

Another favorite of Thompson’s is “A Dignified Life, The Best Friends™ Approach to Alzheimer’s Care: A Guide for Care Partners” by Virginia Bell, a gerontological social worker and dementia expert, and David Troxel, MPH.

“This is a really compassionate way to partner with someone with dementia through care and is a foundation for the Best Friends method that is used by mini-care communities across the country,” Thompson says. “This focuses on person-centered care and understanding the life story to provide care for them in a way they would desire.”

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Dementia affects over 55 million people worldwide, with approximately half of the costs attributed to informal caregivers,^[01] so preparing financially is essential.

Maureen Bradley, one of A Place for Mom’s most seasoned senior care experts, recommends “The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias, and Memory Loss” by Nancy L. Mace, MA, and Dr. Peter V. Rabins, MPH.

“‘The 36-Hour Day’ is an oldie but a goodie and is considered a must-read for families of folks living with dementia,” says Bradley, who’s currently pursuing her doctoral thesis on non-pharmacological interventions for cognitive decline in older adults.

This book has it all: from daily struggles to signs and symptoms of dementia to how caring for a loved one with dementia affects you, in addition to financial resources, explanations of nursing homes and other types of living arrangements, and dementia research. Experts and families alike recommend this book as a top-rated resource that answers many commonly asked questions.

Bradley strongly suggests “Creating Moments of Joy for the Person With Alzheimer’s or Dementia: A Journal for Caregivers” by author and nationwide speaker Jolene Brackey.

“This is simply an excellent book on dementia for caregivers,” Bradley says. “For families living with dementia, it’s all about celebrating what’s there and what’s next, instead of focusing on what’s gone.”

This book includes sections designated for journaling. According to a 2016 study in the American Journal of Alzheimer’s Disease and Other Dementias, journaling may help caregivers by allowing them find more meaning in their experience.^[02]

Bradley also loves “How to Say It to Seniors: Closing the Communication Gap With Our Elders” by David Solie. This one is a comprehensive book on closing the communication gap between family caregivers and seniors.

“Although this is not just about people with dementia, it’s valuable for interacting with older folks, in general,” Bradley says. “I really like how it teaches family members how to have meaningful exchanges and be mindful of how the generation gap can influence communication.”

“Minding Our Elders: Caregivers Share Their Personal Stories” is a “portable support group for caregivers of elders” that grew from author Carol Bradley Bursack’s time as a caregiver to seven elderly loved ones. With a foreword by Mary Ellen Erickson, Ph.D., the book features true, personal accounts from caregivers about their experiences.

Bursack, an NCCDP-certified dementia support group facilitator and expert on aging, shares this about her experience and why she wrote “Minding Our Elders”: “My dad had neurosurgery to correct the effects that age had on his WW2-related brain injury. He came out of surgery with dementia. My uncle developed vascular dementia, my mother-in-law’s Alzheimer’s became apparent, and my mother’s memory issues worsened. I was the primary caregiver for them all.”

“When I began my caregiving journey, the internet was limited, and social media was nonexistent,” Bursack says. “I stumbled around, calling doctor’s offices and clinics, trying to learn what resources might be available. There were only a few caregiving-related books, so I mostly coped. This is why I wrote ‘Minding Our Elders: Caregivers Share Their Personal Stories.’ I call it a support group for a reason!”

For help with resistant loved ones, getting better medical care, setting up legal documents, workarounds for common obstacles, and much more, Bursack recommends “When Your Aging Parent Needs Help: A Geriatrician’s Step-by-Step Guide to Memory Loss, Resistance, Safety Worries, and More” by Dr. Leslie Kernisan and Paula Spencer Scott.

“This book also has unique, downloadable guides and checklist printouts, which are a bonus,” Bursack says.

“On Pluto: Inside the Mind of Alzheimer’s” Greg O’Brien, with a foreword by Lisa Genova, neuroscientist and author of “Still Alice,” provides a rare look inside Alzheimer’s, according to Bursack.

The author’s family had a predisposition to a form of early-onset dementia, which affected many of his family members. The condition took O’Brien’s maternal grandfather, his mother, and his paternal uncle, and before his father passed away, he was diagnosed with dementia.

O’Brien’s story is also the subject of a short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James.

“The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help” by Joy Loverde, a business advisor and media spokesperson, is a must-have book offering broad caregiving support, according to Bursack.

“It’s a classic resource that any caregiver will find useful,” she says.

This book guides caregivers through their planning needs, from finances to long-distance care strategies. It’s a comprehensive read that will help you find your footing with checklists, a directory of low or zero-cost resources, and more.

To learn what it’s like to live with Alzheimer’s, Bursack recommends “A Tattoo on My Brain: A Neurologist’s Personal Battle Against Alzheimer’s Disease” by Teresa H. Barker and Dr. Daniel Gibbs, a former neuroscientist and general neurologist who retired from practice in 2013 due to Alzheimer’s.

“A Tattoo on My Brain” is also a short documentary film starring Gibbs and his wife Lois.

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Another personal story recommended by Bursack is Darlene Fuchs’ “Get in the Boat: A Memoir of Love, Loss, and the Dance With Dementia.” Fuchs wrote the book as a final tribute to her parents, who both battled dementia, and based it on her father’s journal entries during his time as a dementia caregiver to his wife, Gail. According to Bursack, Fuchs’ memoir will be relevant for many years to come.

Here’s an excerpt from Chapter 1, titled “Get in the Boat.”

This was my Gail — wife and mother to my children, my beautiful best friend, my queen. She was so peaceful and still, so like herself. I could almost pretend she was just as she ever was, that we were not really at Victory Centre but back in our family home, experiencing life just as we always had.

She opened her eyes, and the dream was gone. “Who are you?” she asked, her voice groggy but clear. Sometimes it was most steady when her memory was least so. But I would take a few unscrambled words from her whenever they came.

“I’m your husband, Richard.” I smiled wide, hoping my cheerfulness might crack the shell.

“Oh…” came her answer, but her eyes glared suspiciously.

Somebody Stole My Iron: A Family Memoir of Dementia,” a book by Vicki Tapia, founder and director of the nonprofit AlzAuthors — a global community of over 200 authors for Alzheimer’s and other dementias — also comes highly recommended by Bursack.

“’Somebody Stole My Iron’ is a classic memoir that remains relevant,” Bursack says about the book, which started as a diary. “[It’s] a harrowing, yet warm tale about how both of her parents were diagnosed with different types of dementia.”

Bursack suggests reading a beautifully written, firsthand story by Ann Campanella, “Motherhood: Lost and Found.”

“This is a classic memoir by poet Ann Campanella that describes her struggle with becoming a mother just as she was losing her own mom bit by bit due to Alzheimer’s,” Bursack explains.

Bursack recommends “What the Hell Happened to My Brain? Living Beyond Dementia” by Kate Swaffer, who holds a master of science in dementia care. The author, who herself became diagnosed at age 50, is also the founder of the Dementia Alliance International, a global advocacy and support group for people living with dementia.

Here’s an excerpt from the book’s foreword by Dr. Henry Brodaty.

Dementia is never one person’s illness. Its ripples spread wide, enveloping family, touching friends and bumping up against professional services and care. Dementia can be cruel — hard for those affected and sometimes even harder for care partners.

While dementia books for caregivers can be helpful sources of inspiration, knowledge, and education, you may come to need additional help as your loved one’s disease progresses.

Consider joining a caregiver support group, utilizing respite care services, or seeking long-term memory care. Contact Senior Living Advisors at A Place for Mom if you’re interested in care support. These experts can assist you in finding a range of local senior living and in-home care options for your loved one, all at no cost to your family.