Reading List for Care Givers

Grandfather and young girl share a moment coloring at a kitchen table, in front of sunny window

Learning about dementia makes care giving easier

Caring for someone with Alzheimer’s or dementia is a tough challenge.

Plus, many of the most effective care and communication techniques aren’t easily figured out and might even go against our intuition. Not knowing these helpful techniques can cause added frustration and stress for both you and your older adult. That’s why educating yourself is so important. Learning as much as you can about the disease helps you solve everyday issues and improves quality of life for both of you.

To make caring for your older adult a little easier, we rounded up 9 top Alzheimer’s and dementia care giving books that are helpful for both new and experienced caregivers. They’re praised and recommended by experts and family caregivers alike.

Modules and webinars are not the only trainings available to you. Books and scholarly articles on dementia care do count towards the New Hampshire dementia care training requirement outlined in NH RSA 151. See your education supervisor to be sure you have met minimum annual training requirements for dementia care. The following books do meet the requirements for dementia education as defined in section: 151:48.


10 must-read Alzheimer’s books for caregivers

These 10 books help with practical care tasks, explain how to manage challenging dementia symptoms, share tips for coping with stress, give ideas for realistic and engaging activities, and share personal stories.


1. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Other Dementias, and Memory Loss, 6th edition

by Nancy L. Mace and Peter V. Rabins


The 36-Hour Day is often referred to as the “gold standard” book for families who are caring for someone with Alzheimer’s or dementia.

This is an extensive book for families that are new to caring for a loved one with Alzheimer’s. It covers all aspects of care including emotional issues, financial details, and day-to-day coping with dementia behaviors. You can also find valuable information about nursing homes and other types of residential living in these pages. 

The latest edition also includes new info on:

  • Devices to make life simpler and safer for people who have dementia
  • Strategies for delaying behavioral and neuropsychiatric symptoms
  • Changes in Medicare and other health care insurance laws
  • Palliative care, hospice care, durable power of attorney, and guardianship
  • Dementia due to traumatic brain injury
  • Choosing a residential care facility
  • Support groups for caregivers, friends, and family members

What caregivers are saying:
“Recommended to me by a neuropsychiatrist treating family member. A good guide for those dealing with someone with dementia. It gives good guidelines as to what to expect, how to deal with it and plans for the inevitable future consequence of this disease.”

“I first purchased this book about 23 years ago when I was caring for my mother who had dementia. It helped me greatly. My niece is now caring for another relative with dementia and I decided to purchase the updated version for her and one for me also. It is very, very helpful.”

“Very helpful in understanding what’s going on if you have a loved one beginning to show signs of dementia. Also helps families to understand the issues they will be dealing with as a family, the strains it can place on families, and how to try to mitigate them and how to avoid letting your loved one’s dementia tear your family apart. That’s what’s been the most helpful for me, that and knowing that the behaviors aren’t on purpose or something the person can control, so you can be prepared to not take it personally or overreact. A good resource, I’m glad my family found it.”


2. Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease

by Joanne Koenig Coste

Joanne Koenig Coste has a practical approach to the emotional well-being of both the person with dementia and their caregiver.

More than four million Americans suffer from Alzheimer’s, and as many as twenty million have close relatives or friends with the disease. 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 care partners and patients and has proven successful with thousands of people living with dementia.

She emphasizes relating to people with dementia in their own reality and focuses on improving communication – proven successful with thousands of people living with dementia.

This book also offers hundreds of practical tips, including how to:

  • Cope with the diagnosis and adjust to the disease’s progression
  • Help the patient talk about the illness
  • Face the issue of driving
  • Make meals and bath times as pleasant as possible
  • Adjust room design for the patient’s comfort
  • Deal with wandering, paranoia, and aggression

What caregivers are saying:
“A really nice reference for all stages of Alzheimer’s. I appreciate the “to the point” talk and suggestions and feel much better approaching challenges of being a caregiver.”

“Written by someone who knows from experience what a caregiver’s life entails. She gives so many practical hints for making life better for the caregiver and the one with dementia.”

“This is an excellent book to help understand how to care for someone with dementia. I highly recommend it. It is eye-opening and invaluable for helping and interacting with someone who has dementia. And it will allow the caregivers/family members to have a far more enriched relationship with the dementia sufferer. I strongly believe that this helps me and my sisters improve the quality of our father’s life.”


3. Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers, 5th edition

by Jolene Brackey


Jolene Brackey’s vision is that we’ll focus on creating moments of joy that put a smile on their face or a twinkle in their eyes. Even if they won’t remember what we said or did, the positive feelings will stay with them.

The newest edition of this book is filled with even more practical advice sprinkled with hope, encouragement, new stories, and humor.

What caregivers are saying: “I like that the book has questions/scenarios so you can quickly read about the different daily occurring topics, which are right on for our family.”

“This book has made me laugh out loud during moments when I felt like sobbing. I am the primary caregiver for my Mom; I have two sisters who are here for Mom and for me as much as they can be. Reading this has helped me create moments of joy for all of us. I AM the nutty caregiver the author urges us to be. Nothing is too outrageous to say or do in order to make Mom laugh. I have let go of my inhibitions; I have let go of my preconceived notions of how I think Mom should act; I have let go of the thought that I know what’s best for her to eat or wear.”

“Good book, helped me do things with my mom that brought her joy. I am so happy I read this and implemented some of the ideas in it because she died six months after I bought the book,and I am SO HAPPY that I was able to bring her joy in her last months of life. She was so confused and angry and depressed about her dementia, and the ideas in here made her forget about it, even if only for a little while…”


4. Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers

by Paula Spencer Scott


In her book, Paula Spencer Scott talks about what every family caregiver needs to know – how to help someone with dementia without sacrificing yourself.

This new edition of Surviving Alzheimer’s offers the best, most current thinking on how to help a loved one with memory loss and related symptoms without sacrificing YOU.

You’ll learn:

  • What’s behind odd, frustrating behaviors like repetition, wandering, personality changes, bathing resistance, and aggression-and what you can do.
  • How to defuse resentment, guilt, and family friction.
  • What to say for better communication and more cooperation.
  • Special advice for spouses, out-of-town caregivers, and other specific situations.
  • 100s of confidence-raising solutions from top doctors, social workers, dementia specialists, and family caregivers All in a fast, scannable format perfect for busy or overwhelmed dementia helpers.
  • The best, most current thinking on how to enhance quality of life and safety while minimizing stress on everyone involved.
  • The “Why This, Try This” approach to understanding what’s behind odd, frustrating behaviors – and what you can do about them.
  • How to defuse resentment, guilt, anger, and family friction.
  • Lifesaving insights from a team of top dementia-care experts from geriatrics, psychiatry, social work, law, dementia therapy, and caregiver advocacy.
  • Stories and ideas from real families.
  • A fast, scannable format that’s perfect for the short-on-time caregiver.

What caregivers are saying:
“An excellent and extremely helpful book for anyone caring for someone with dementia. It has helped me and my sisters improve the quality of our father’s life as he is being affected by this cruel disease. It has also helped us improve the quality of OUR interaction with him, learning how best to communicate with him, and learning how to keep him engaged and focused as much as possible. Truly remarkable!”

“This book has save me from so much stress and help figure things I wasn’t aware my mother was suffering from. You learn the code to speak with them…”

“Love the format – quick and easy to look up a symptom and find reassuring advice.”


5. Thoughtful Dementia Care: Understanding the Dementia Experience

by Jennifer Ghent-Fuller


Jennifer Ghent-Fuller explains the loss of different types of memory and other thinking processes and describes how that affects someone’s daily life and their understanding of the world around them.

She also shares practical suggestions based on the way people with dementia view common life situations and real-life experiences that clarify and deepen the explanations.

The author carefully explains the loss of various types of memory and other thinking processes. She describes how these losses affect the day to day life of people with dementia, their understanding of the world around them and their personal situations. The many portrayals of real life experiences clarify and deepen the explanations. Jennifer is a nurse who worked for many years as an educator and counselor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. This book is intentionally written in easily understood plain language.

What caregivers are saying:
“READ this book! You will understand why your loved one seems perfectly fine on the phone to those who don’t live with them when you know perfectly well that they aren’t fine. It will help you change your approach and lessen the stress all the way around. It’s an easy read, too.”

“I recently became a caregiver for my father who has Alzheimer’s Disease and didn’t understand what he is going through cognitively or why I was getting so stressed out until I began reading this book. I highly recommend it to others who have loved ones with dementia or who, like me , find themselves suddenly thrust into the role of caregiver for a parent with Alzheimer’s.”


6. Activities to do with Your Parent who has Alzheimer’s Dementia

by Judith A. Levy EdM OTR

Everyone needs to feel engaged & entertained. But finding activities that someone with dementia can enjoy is a constant challenge.

The activities in this book help maintain your older adult’s self-care skills, mobility, and socialization. The tasks encourage success, boost self-esteem, and give you different opportunities to interact with your older adult.

These tasks encourage success and feelings of self worth, and offer imaginative ways to interact with your parent. The Activity Assessment Form objectively allows you to look at each of these tasks. It can help to determine the setup and environment that works best with your parent. This written format is a tool which also encourages consistency between caregivers.

The book also includes:

  • Over 50 activity ideas with suggestions on how to do them
  • Caregiver burnout prevention ideas
  • Alzheimer’s dementia support sources
  • Room by room safety suggestions
  • Home and personal safety assessment
  • Definitions of frequently used medical terms

Activities to Do with Your Parent Who Has Alzheimer’s Dementia provides a selection of user-friendly activities that will help maintain your parent’s self-care skills, mobility, and socialization.


7. The Dementia Handbook: How to Provide Dementia Care at Home

by Judy Cornish

Providing dementia care is profoundly stressful for families and caregivers. People with dementia or Alzheimer’s experience emotional distress, which leads to behavioral complications and the need for institutional care. However, if families and caregivers are able to identify the emotional needs caused by dementia and understand which skills are lost and which remain, they can lower the behavioral complications and their own stress.

Judy Cornish is the founder of the Dementia & Alzheimer’s Wellbeing Network® (DAWN). She approaches dementia care with clear and empathetic methods that improve the lives of the person with dementia and those caring for them.

Judy has identified a pattern in the abilities and disabilities of people living with dementia. Based on this, she developed methods for caregivers to ease emotional distress, which can quickly and safely resolve challenging behaviors.

Though people with dementia lose a sense of self, they are still the same person you always loved. Judy Cornish understands this. The Dementia Handbook: How to Provide Dementia Care at Home is the supportive guide you’ve been looking for as you walk alongside your loved one on this difficult—but potentially rewarding—new path.

What caregivers are saying:
“This book has such an unique simple way to explain how to handle some of the common problems that arise in the early stages of Alzheimer’s and how to handle them with the least amount of resistance.”

“I got more useful information and strategies for dealing with dementia from this book than I have from any physician. I highly recommend this book.”


8. When Reasoning No Longer Works: A Practical Guide for Caregivers Dealing with Dementia & Alzheimer’s Care

by Angel Smits


Nearly five million families deal with Alzheimer’s Disease and other forms of dementia on a daily basis. They do this with little training, and often only their good intentions guide them. When Reasoning No Longer Works is the training manual these family caregivers have been searching for.

Written by Angel Smits, a gerontologist with over 20 years of experience, like a training manual for family caregivers caring for someone with dementia. This reference gives the reader an easy to understand view of what dementia does to the brain, how it is diagnosed, and most importantly, how to deal with its effects.

It gives an easy-to-understand view of what dementia does to the brain, how it’s diagnosed, and most importantly, how to deal with its effects.

Topics include:

  • How to avoid a catastrophic reaction
  • Specific approaches for aggressive behavior
  • How to deal with disruptive behaviors
  • Ways to diminish wandering
  • What to do when a wanderer is missing
  • When to look for outside help

9. The Forgetting: Alzheimer’s: Portrait of an Epidemic

By: David Shenk

David Shenk, a journalist and NPR commentator, helps every caregiver explore the nature of memory and the history of Alzheimer’s from its discovery to present. He discusses the role of scientists, caregivers, and policymakers in the treatment history of the disease. This book is great for laying a foundation in your understanding of Alzheimer’s. 

Afflicting nearly half of all people over the age of 85, Alzheimer’s disease kills nearly 100,000 Americans a year as it insidiously robs them of their memory and wreaks havoc on the lives of their loved ones. It was once minimized and misunderstood as forgetfulness in the elderly, but Alzheimer’s is now at the forefront of many medical and scientific agendas, for as the world’s population ages, the disease will touch the lives of virtually everyone. David Shenk movingly captures the disease’s impact on its victims and their families, and he looks back through history, explaining how Alzheimer’s most likely afflicted such figures as Jonathan Swift, Ralph Waldo Emerson, and Willem de Kooning. The result is a searing and graceful account of Alzheimer’s disease, offering a sobering, compassionate, and ultimately encouraging portrait.

10. The Best Friends Approach to Alzheimer’s Care: A Dignified Life


By: Virginia Bell and David Troxel

We love this book because it’s a program that focuses on adapting to each person’s remaining strengths and abilities. It touches on the essential elements of friendship: respect, empathy, support, trust, and humor which create an effective care model. It discusses how to ensure the highest quality of life for someone with Alzheimer’s by preventing catastrophic episodes and making each day as consistent as possible.

A Dignified Life helps combat the burnout and frustration that often accompany the task of caring for an Alzheimer’s patient. Author David Troxel, an Alzheimer’s expert and executive director of the California Central Coast Chapter of the Alzheimer’s Association, maintains that at its simplest this approach is based on treating the person like a best friend and working from their strengths, not their weaknesses.

“It was amazing! How we meet daily challenges of caring. Meet daily challenges. gain confidence. communicate successfully. Handle family disagreements. Work with doctor. find community resources. Select things to do together. take care of self. Learn the best friends method. memory making–how to write and use the person’s life story.”

“Best book I’ve read on Alzheimer’s disease yet”

 

This article wasn’t sponsored, but does contain some links to find these publications. These titles are also available at local book sellers or libraries.

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