The best books to understand dementia

Andrew E. Budson and Maureen K. O'Connor Author Of Six Steps to Managing Alzheimer's Disease and Dementia: A Guide for Families
By Andrew E. Budson and Maureen K. O'Connor

Who are we?

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. 


We wrote...

Six Steps to Managing Alzheimer's Disease and Dementia: A Guide for Families

By Andrew E. Budson, Maureen K. O'Connor,

Book cover of Six Steps to Managing Alzheimer's Disease and Dementia: A Guide for Families

What is our book about?

In our book, Six Steps to Managing Alzheimer's Disease and Dementia: A Guide for Families, we begin by explaining dementia and its various causes, including Alzheimer’s disease, vascular dementia, Lewy body disease, and others. We then describe how families can manage issues with memory, language, vision, behavior, agitation, aggression, driving, incontinence, sleep, and more, all without medications. Which medications can be helpful—and which can make things worse (more than 100 listed by name)—are then discussed. We close by reviewing how to care for yourself as a caregiver, build your care team, sustain your relationship with your loved one, and plan for the future.

The books we picked & why

Shepherd is reader supported. We may earn an affiliate commission when you buy through links on our website. This is how we fund this project for readers and authors (learn more).

The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do about It

By Jason Karlawish,

Book cover of The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do about It

Why this book?

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.” 


Floating in the Deep End: How Caregivers Can See Beyond Alzheimer's

By Patti Davis,

Book cover of Floating in the Deep End: How Caregivers Can See Beyond Alzheimer's

Why this book?

Reading Patti Davis’s book is like sitting in her living room talking with her, one caregiver to another. Because she not only lived through Alzheimer’s disease and dementia with her father, Ronald Reagan, but ran a support group for a number of years, her knowledge is vast and she shares it with you. For example, chapters with titles such as, “Grief Arrives Early,” “Creative Lying,” “The Battle Over Bathing,” and “Where is the Person I Knew?” discuss important topics in relatable ways. Her story and the way she tells it also make this book a wonderful read.


Still Alice

By Lisa Genova,

Book cover of Still Alice

Why this book?

There are many people who try to write a novel from the perspective of someone with Alzheimer’s disease; Dr. Genova succeeds where many fail. We love how you can really put yourself in Alice’s shoes and empathize with her as she makes difficult decisions and then has more and more difficulty in comprehending what is happening around her. It was a fantastic book when she first self-published it in 2007 and it is a fantastic book today.


Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease

By Joanne Koenig Coste,

Book cover of Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease

Why this book?

This book is wonderful for so many reasons. It reminds us that simple, commonsense approaches often work to solve or ameliorate daily problems. It shows us ways that communication is possible even when language fails. It encourages us to see through the individual’s eyes and live in their world. It urges us to focus on what the person is still able to do, and to compensate for or simply ignore what they cannot. And it inspires us to create moments of success and laughter along the way. 


The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias

By Nancy L. Mace, Peter V. Rabins,

Book cover of The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias

Why this book?

Now in its 7th edition, this book is the classic guide to caregiving for individuals with dementia. Comprehensive, and filled with stories and anecdotes, it is packed with valuable information on dementia and the behaviors that dementia engenders. We have read it several times and have recommended it to hundreds if not thousands of families. 


5 book lists we think you will like!

Interested in Alzheimer's disease, dementia, and caregiver?

5,809 authors have recommended their favorite books and what they love about them. Browse their picks for the best books about Alzheimer's disease, dementia, and caregiver.

Alzheimer's Disease Explore 43 books about Alzheimer's disease
Dementia Explore 57 books about dementia
Caregiver Explore 36 books about caregiver

And, 3 books we think you will enjoy!

We think you will like Dignity and Grace, Creative Care, and On Vanishing if you like this list.