Christmas and Hanukah will soon be upon us! Families living with Alzheimer’s or other memory loss may appreciate receiving a book that helps them understand the disease affecting their lives. I have culled through my own library, and selected books that may be helpful to anyone who is caring or loving someone with dementia.

 

Books that Guide

 

The 36-Hour Day, 6^th Edition
Nancy L. Mace, M.A. and Peter V. Rabins, M.D., M.P.H.

This book has stood the test of time as the “go to” book that provides thoughtful , frank and insightful information about the disease and the many issues it can raise for a family. The authors have updated the text many times to reflect advances in research, medication and care options. Make sure you purchase the 6^th edition (unless, of course, they sneak out a 7^th edition before Christmas).

 

Creating Moments of Joy
Jolene Brackey

This is a wonderful, positive resource! The book consists of many short chapters that lends itself to reading one or two suggestion at a time. Ms. Brackey’s approach is both practical and uplifting, and may just provide you with the solution you need.

 

Books Giving Context to Alzheimer’s

 

Learning to Speak Alzheimer’s
Joanne Koenig Coste

Ms. Koenig Coste was one of the first people to set out the habilitation approach to Alzheimer’s. Her book introduces readers to the world as seen by the person with Alzheimer’s, allowing caregivers to respond to the demands of those with the disease in more effective ways.

 

The Forgetting Alzheimer’s: Portrait of an Epidemic
David Shenk

Although this book is now dated, it is still worth the read, as it provides a great history of the discovery of Alzheimer’s and wonderful vignettes of exceptional people who had the disease and how they coped, including Ralph Waldo Emerson, Frederick Law Olmsted and Ronald Regan. Last, but not least, it draws back a curtain on the politics and economics of drug development.

 

Dementia Beyond Drugs
Allen Power, M.D.

This focus of this book is on institutional care and its reliance on medication to control behavioral problems. The author is a physician at St. John’s Home in Rochester, New York, a very large nursing home that is planning to build Green House® homes to replace many of its traditional beds.

 

Personal Journeys

 

Still Alice
Lisa Genova

This is a work of fiction about a Harvard professor who develops early onset Alzheimer’s disease. It is different from other books in that it imagines how the world appears to someone with Alzheimer’s.

 

Can’t We Talk About Something More Pleasant?
Roz Chast

This is the personal story of Ms. Chast, the well known New Yorker cartoonist, and the challenges of caring for her parents during their final years of life. It is written in a cartoon style, but the subject is very painful. And although Ms. Chast finds humor in her situation, her story is frank and very tender.

 

Books Addressing Serious Illness

 

Knocking on Heaven’s Door
Katy Butler

This book traces the fate of Ms. Butler’s parents, one of whom died slowly over many years after a massive stroke, the other quickly after refusing aggressive medical treatment. Ms. Butler is a science reporter and her knowledge and curiosity turn this memoire into a manifesto about the need to be fully involved and informed when making treatment decisions as you age. My previous review of this book is here.

 

Being Mortal
Atul Gawande

This book was just published this fall, and it traces how we individually and as a society make choices as our health fails. His conclusion is that medicine can fail us by doing too much, a conclusion that raises compelling questions about how to make decisions to achieve the best possible life.

 

The Best Care Possible
Ira Byock, M.D.

Written by the Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center, this book explains what palliative care means in action. Telling the stories of his patients, the reader gains an appreciation for what compassionate care can achieve for patients and their families.