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.

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The books we picked & why

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 did I love 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.” 

By Jason Karlawish, Jason Karlawish,

Why should I read it?

2 authors picked The Problem of Alzheimer's as one of their favorite books, and they share why you should read it.

What is this book about?

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…

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

Why did I love 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.

By Patti Davis,

Why should I read it?

1 author picked Floating in the Deep End as one of their favorite books, and they share why you should read it.

What is this book about?

"For the decade of my father's illness, I felt as if I was floating in the deep end, tossed by waves, carried by currents but not drowning." In a singular account of battling Alzheimer's, Patti Davis eloquently weaves personal anecdotes with practical advice tailored specifically for the overlooked caregiver. After losing her father, Ronald Reagan, Davis founded a support group for family members and friends of Alzheimer's patients; drawing on those years, Davis reveals the surprising struggles and gifts of this cruel disease. From the challenges of navigating disorientation to the moments when guilt and resentments creep in, readers are…

Still Alice

By Lisa Genova,

Book cover of Still Alice

Why did I love 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.

By Lisa Genova,

Why should I read it?

3 authors picked Still Alice as one of their favorite books, and they share why you should read it.

What is this book about?

A moving story of a woman with early onset Alzheimer's disease, now a major Academy Award-winning film starring Julianne Moore and Kristen Stewart.

Alice Howland is proud of the life she worked so hard to build. At fifty, she's a cognitive psychology professor at Harvard and a renowned expert in linguistics, with a successful husband and three grown children. When she begins to grow forgetful and disoriented, she dismisses it for as long as she can until a tragic diagnosis changes her life - and her relationship with her family and the world around her - for ever.

Unable to…

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

Why did I love 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. 

By Joanne Koenig Coste,

Why should I read it?

1 author picked Learning to Speak Alzheimer's as one of their favorite books, and they share why you should read it.

What is this book about?

A guide to more successful communication for the millions of Americans caring for someone with dementia: “Offers a fresh approach and hope.”—NPR

Revolutionizing the way we perceive and live with Alzheimer’s, Joanne Koenig Coste offers a practical approach to the emotional well-being of both patients and caregivers that emphasizes relating to patients in their own reality. Her accessible and comprehensive method, which she calls habilitation, works to enhance communication between carepartners and patients and has proven successful with thousands of people living with dementia.

Learning to Speak Alzheimer’s also offers hundreds of practical tips, including how to
-Cope with the…

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

Why did I love 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. 

By Nancy L. Mace, Peter V. Rabins,

Why should I read it?

1 author picked The 36-Hour Day as one of their favorite books, and they share why you should read it.

What is this book about?

With over 3.5 million copies sold, the bestselling guide to understanding and caring for people with dementia is now completely revised and updated!

For 40 years, The 36-Hour Day has been the leading work in the field for caregivers of those with dementia. Written by experts with decades of experience caring for individuals with memory loss, Alzheimer's, and other dementias, the book is widely known for its authoritativeness and compassionate approach to care. Featuring everything from the causes of dementia to managing its early stages to advice on caring for those in the later stages of the disease, it is…

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