Alzheimer's Disease Education and Referral Center

Communication and Behavior Problems: Resources for Alzheimer's Caregivers.

Caregivers face a variety of challenges when a loved one develops Alzheimer’s disease or another dementia, including communicating with the memory-impaired person and responding to difficult behaviors. This resource list offers a selection of articles, books, videos, and other materials that may help.

Some resources on this list are free; others must be purchased. To buy an item, please contact the publisher to confirm price and payment information. Many items are also available from traditional and online bookstores.

The items in this resource list are organized in three categories:

Communication Resources

Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging (2013, 104 p.)

This free guide helps caregivers understand and cope with the many challenges of caring for people with Alzheimer’s disease. Among other topics, it provides caregiving strategies for coping with changes in communication skills and changes in personality and behavior, such as agitation, sleep problems, and hallucinations.

Published by the National Institute on Aging’s Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800- 438-4380. Email: adear@nia.nih.gov. Free online access.

Changes in Communication Skills (2012, 2 p.)

This 2-page tip sheet explains common communication problems in people with Alzheimer’s disease and how caregivers can help make communication easier. It gives specific examples of requests and questions caregivers can use and which ones to avoid.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Communicating (2009).

This online guide offers suggestions to improve communication with people who have Alzheimer’s disease. It explains how Alzheimer’s affects a person’s ability to communicate. It also provides guidelines for enhancing communication and specific tips for helping people with the disease express themselves and understand others.

Published by the Alzheimer’s Association, New York City Chapter. Phone: 1-646-744-2900. Email: helpline@alznyc.org. Free online access.

Communicating with Patients who Have Dementia (2013, 1 p.)

Learn what works and what doesn’t in this brief but informative tip sheet. Specific tips for communicating verbally and nonverbally with a person who has Alzheimer’s emphasize the importance of using simple, nonpatronizing language.

Published by the Arizona Geriatric Education Center. Free online access.

Communication: Tips for Successful Communication at All Stages of the Disease (2013, 8 p.)

This booklet suggests ways to improve two-way communication with a person with Alzheimer’s disease who has difficulty expressing thoughts and emotions and understanding others. The booklet provides additional suggestions for communicating with people who have hearing or visual limitations.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: info@alz.org. Free online access.

Communication: Techniques

This online tip sheet has several tips for communicating with a person with Alzheimer’s disease or a related dementia. It discusses tone of voice, word choice, eye contact, body language, and more.

Published by the Alzheimer’s Foundation of America. Phone: 1-866-232-8484. Email: info@alzfdn.org. Free online access.

Creating Moments of Joy for the Person with Alzheimer’s or Dementia. 4th ed. (2007, 306 p.)

Jolene Brackey’s guide explores ways to help individuals with dementia experience moments of joy by reliving favorite pastimes and fond memories. It discusses the importance of patience and understanding, letting go of high expectations, and providing structure and routine. Also described are suggestions for positive verbal and nonverbal communication and for keeping a positive attitude and mood.

Published by Purdue University Press. Paperback $24.95.

Enhancing Communication.

Created by a group of people with dementia, this online booklet outlines the main communication-related challenges of people with dementia. One of three “By Us For Us” guides, it provides practical solutions and strategies to make opinions, feelings, and experiences known. It also suggests ways family caregivers and health professionals can enhance communication with people with dementia.

Published by the Murray Alzheimer Research and Education Program. Phone: 1-519-888-4567. Free online access.

How to Communicate with Alzheimer’s: A Practical Guide & Workbook for Families (2004, 152 p.)

This book by a speech pathologist Susan Kohler is designed to help family members communicate with a loved one who has Alzheimer’s disease, another dementia, confusion, or memory loss. In an easy-to-read format, it discusses the communication strengths and weaknesses of people with Alzheimer’s and effective communication strategies for them and friends and family.

Published by Granny’s Rocker Publishing. Phone: 1-866-743-9624. Email: susankohler@grpublishing.com. $17.95.

Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease (2004, 241 p.)

This book by Joanne Koenig Coste describes the “habilitation” approach to caring for a person with Alzheimer’s disease, in which caregivers relate to the person with dementia’s current reality and abilities to promote emotional well-being. Caregivers can learn practical tips for communicating with individuals with Alzheimer’s and for reducing anxiety, agitation, and aggression.

Published by Houghton Mifflin. Available from online booksellers. Paperback $12.76. A related video is available from Terra Nova Films.

Validation Techniques for Dementia Care: The Family Guide to Improving Communication (2008, 144 p.)

This handbook teaches family and professional caregivers how to use the “validation” approach to overcome the communication and relationship challenges of caring for older adults with dementia. This approach was developed to help caregivers improve communication, avoid conflict, and maintain connections by validating expressed feelings rather than by focusing on the person’s confusion. Verbal and nonverbal communication techniques are illustrated in real-life case studies.

Published by Health Professions Press. Phone: 1-888-337-8808. Email: custserv@healthpropress.com. Paperback $22.95.

When Words Have Lost Their Meaning: Alzheimer’s Patients Communicate Through Art (2004, 224 p.)

Art can give people with Alzheimer’s a way to express their thoughts and emotions when they can no longer communicate well verbally. This book describes the cognitive, emotional, and behavioral changes that can affect a person’s ability to communicate. Guidelines for conducting art therapy with individuals and groups, case studies, and more than 70 drawings and paintings are included.

Published by ABC-CLIO. Phone: 1-800-368-6868. Email: customerservice@abc-clio.com. Hardcover $55; available as an e-book.

Behavior Resources

Bathing Without a Battle: Person-Directed Care of Individuals with Dementia. 2nd ed. (2008, 208 p.)

This book for professional and family caregivers offers an individualized approach to bathing and personal care of individuals with dementia. Its purpose is to change bathing practices that create unnecessary distress and discomfort for people with dementia. The strategies and techniques have been shown to work in both institutional and home settings.

Published by Springer Publishing Co. Phone: 1-877-687-7476. Email: cs@springerpub.com. Softcover $60; available as an e-book.

Behavioral and Psychiatric Alzheimer’s Symptoms (PDF, 501K) (2011, 4 p.)

Many caregivers find behavioral symptoms to be the most challenging effects of Alzheimer’s disease. These symptoms are often a key factor in the decision to place a loved one in residential care. This fact sheet helps people recognize the behavioral symptoms of Alzheimer’s, understand the causes, and learn about medication and nonpharmacological treatments.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: info@alz.org. Free online access.

Behaviors: How to Respond When Dementia Causes Unpredictable Behaviors (PDF, 868K) (2012, 16 p.)

This booklet describes difficult behaviors—aggression, anxiety, agitation, confusion, repetition, and suspicion—seen in people with dementia and how to respond to them. It outlines factors such as physical discomfort or frustration that may cause the behavior and describes how to identify common behaviors, determine their triggers, and respond effectively.

Published by the Alzheimer’s Association. Phone: 1-800-272-3900. Email: info@alz.org. Free online access.

Coping with Agitation and Aggression (PDF, 1.2M) (2012, 2 p.)

This tip sheet defines agitation and aggression, lists their possible causes, and gives caregivers suggestions for coping by, for example, making changes in the environment and giving reassurance.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Family Guide to Alzheimer’s Disease: Volume 2—Behavior Issues (2004, 67 min.)

Part of a series for families affected by Alzheimer’s disease, this video describes typical behavior issues, approaches to dealing with behavior problems, and possible causes of these behaviors. Specific topics addressed include agitation, aggression, hallucinations, wandering, sleeplessness, sundowning, incontinence, and socially inappropriate behaviors. The video also describes the use of redirection and “fiblets” as responses to challenging behaviors.

Published by LifeView Resources. Phone: 1-800-395-5433. Email: info@lifeviewresources.com. $24.95.

Hallucinations, Delusions, and Paranoia (PDF, 616K) (2012, 2 p.)

This tip sheet succinctly describes these behaviors and offers tips for coping with them. It explains that in some cases there may be a good reason for a person with Alzheimer’s to become paranoid, for example, if she or she has been a victim of abuse.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Managing Personality and Behavior Changes (PDF, 977K) (2012, 2 p.)

Common changes in personality and behavior are described in this online tip sheet, along with their possible causes, which may be related to the person’s health or environment. It offers concrete tips for responding to these changes.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Rummaging and Hiding Things (PDF, 608K) (2012, 2 p.)

A person with Alzheimer’s may start searching through cabinets and drawers or hiding things around the home. This tip sheet offers steps to allow the person to rummage while protecting belongings and keeping the person safe.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

Safe Return: Alzheimer’s Disease Guide for Law Enforcement (PDF, 231K) (2006, 5 p.)

This guide is designed to help law enforcement personnel understand Alzheimer’s disease and how it affects a person’s thinking and behavior. It discusses situations—such as a person wandering and getting lost, auto accidents, false reports, indecent exposure, and shoplifting—that may be encountered. The guide also discusses what to do when a person with dementia is reported missing and lists the 10 warning signs of Alzheimer’s.

Published by the Alzheimer’s Association. Phone: 1-800- 272-3900. Email: info@alz.org. Free online access.

Sundowning (PDF, 216K) (2013, 2 p.)

In this brief tip sheet, sundowning is defined as restlessness, agitation, irritability or confusion that can begin or worsen as daylights begin to fade. The tip sheet tells caregivers how to spot signs of sundowning and what to do when they occur. Tips for preventing the behavior are also given.

Published by the National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) Center. Phone: 1-800-438-4380. Email: adear@nia.nih.gov. Free online access.

General Resources

Activities of Daily Living: An ADL Guide for Alzheimer’s Care. (2006, 93 p.)

This book by Kathy Laurenhue offers practical advice to help people with Alzheimer’s disease or a related dementia with basic activities of daily living. The author emphasizes that “problem” behaviors of people with Alzheimer’s are often attempts to communicate, and that caregivers should try to look at situations from the person’s perspective.

Available from online bookstores. Paperback $7.16.

Alzheimer’s Basic Caregiving: An ABC Guide (2006, 127 p.).

Kathy Laurenhue offers practical advice on caring for a person with Alzheimer’s disease or a related dementia. The book addresses, for example, effective communication and understanding agitated and aggressive behaviors

Available from online bookstores. $7.16 paperback.

Caregiver’s Guide to Understanding Dementia Behaviors (Guia del cuidador para entender la conducta de los pacientes con demencia) (2004)

This online guide offers practical advice for dealing with common communication and behavioral problems when caring for a person with dementia. General guidelines for understanding and coping with difficult behaviors are followed by suggestions for specific problems such as wandering, incontinence, agitation, sleeplessness, sundowning, and hallucinations.

Published by the Family Caregiver Alliance. Phone: 1-800- 445-8106. Email: info@caregiver.org. Free online access.

Navigating the Alzheimer’s Journey: A Compass for Caregiving (2004, 688 p.)

This guidebook draws on the author Carol Bowlby Sifton’s professional and personal experience in dementia caregiving, offering practical advice about managing the daily care of a person with dementia while caring for oneself to avoid burnout. Topics covered include communicating with someone who has dementia and understanding, preventing, and responding to behavioral symptoms.

Published by Health Professions Press. Phone: 1-888-337-8808. Email: custserv@healthpropress.com. Paperback $26.95.

Remembering Home: Rediscovering the Self in Dementia (2008, 144 p.)

Research has shown that stimulating early memories can have positive effects for people with dementia and can energize their relationships. This book by gerontologist Habib Chaudhury emphasizes the importance of home in the lives of adults with memory disorders and suggests ways that caregivers can use that concept to spark conversation and encourage reminiscing. The author encourages healthcare professionals and activity leaders to embrace a person-centered approach to care and provides tools and information for family caregivers.

Published by The Johns Hopkins University Press. Phone: 1-800-537-5487. Paperback $40.

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