Alzheimer's Disease Education and Referral Center

Managing Alzheimer's Disease Communication and Behavior Problems: A Resource List

Caregivers face a variety of challenges when a loved one develops Alzheimer's disease (AD) or a related disorder, including learning how to communicate with the memory-impaired person and how to respond to difficult behaviors. This resource list gives caregivers an overview of some of the many books, DVDs, and other materials that may help family members and other caregivers deal with communication and behavior issues.

Some of the resources on this list are free; others must be purchased. To buy an item, please contact the organization listed in the “available from” section of the description. Contact information was correct at the time this list was published. However, before you send payment for an item, please confirm that price and payment information are current. Many items are also available from retail and online booksellers.

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

  • General Resources
  • Communication Resources
  • Behavior Resources

General Resources

Activities of Daily Living: An ADL Guide for Alzheimer's Care.

Laurenhue, K. Bradenton, FL: Wiser Now, Inc. 2006. 93 p.

Available from Wiser Now, Inc., 11949 Whistling Way, Lakewood Ranch, FL 34202. (800) 999-0795. E-mail: kathy@wisernow.com. Website: www.wisernow.com. PRICE: $7.95 for single copy; $15.00 for copy of this and Alzheimer's Basic Caregiving: An ABC Guide. ISBN: 097863621X.

This reader-friendly, often humorous book offers practical advice for helping people with Alzheimer’s disease (AD) and related dementias with basic activities of daily living. It is meant to be a companion to Alzheimer’s Basic Caregiving: An ABC Guide. The author emphasizes throughout that the behaviors of people with AD that are commonly viewed as problems are actually attempts to communicate, and that caregivers should try to look at the situation from the patient’s perspective. The book starts with basic rules for providing quality care for a person with AD. The next seven chapters focus on specific aspects of ADL care: reasons for resistance to care, dressing, grooming, oral hygiene, continence care, bathing, and nutrition and hydration. A list of resources and a bibliography are included at the end.

Alzheimer's Basic Caregiving: An ABC Guide.

Laurenhue, K. Bradenton, FL: Wiser Now, Inc. 2006. 127 p.

Available from Wiser Now, Inc., 11949 Whistling Way, Lakewood Ranch, FL 34202. (800) 999-0795. E-mail: kathy@wisernow.com. Website: www.wisernow.com. PRICE: $7.95 for single copy; $15.00 for copy of this and Activities of Daily Living: An ADL Guide for Alzheimer's Care. ISBN: 0978636201.

This reader-friendly, lighthearted book offers practical advice on caring for a person with AD or related dementia. It is meant to be a companion to Activities of Daily Living: An ADL Guide for Alzheimer’s Care. Part I provides background information about dementia in general, specific types of dementia (AD, dementia with Lewy bodies, and multi-infarct dementia), and mild cognitive impairment. It also discusses the pattern of progression in AD, how to distinguish between depression and dementia, and how to assess and relieve pain in people with AD. Part II addresses various caregiving issues, including effective communication; understanding agitated and aggressive behaviors; the role of environment; sleep disturbances; mobility, falls, and wanting to go home; shopping, gathering, rearranging, and repeating; and hallucinations, delusions, and paranoia. A list of resources is included at the end.

Caregiver Guide: Tips for Caregivers of People with Alzheimer's Disease (Guia para quienes cuidan personas con la enfermedad de Alzheimer).

Bethesda, MD: National Institute on Aging. December 2008. 24 p.

Available from Alzheimer's Disease Education and Referral (ADEAR) Center. P.O. Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380; FAX: (301) 495-3334. E-mail: adear@nia.nih.gov. Website: www.nia.nih.gov/alzheimers. PRICE: Free online access and free print copy. NIH Publication number: 01-4013.

This booklet offers tips for caregivers of people with AD. It includes suggestions about dealing with the diagnosis and caregiving needs of someone with memory and cognitive problems, such as: communication, bathing, dressing, eating, activities of daily living, exercise, incontinence, sleep problems, hallucinations and delusions, wandering, home safety, driving, visiting the doctor, and coping with holidays. Caregivers can make suggestions to family and friends who want to visit a person with AD. And when the caregiver is no longer able to take care of the person with AD, this booklet offers tips for choosing a nursing home or assisted living facility. The booklet also provides a list of organizations that offer information about AD and caregiving. Also available in Spanish.

Caregivers.

New York, NY: The Home Box Office (HBO). 2009.

Available from HBO Documentary Films. 1100 Avenue of the Americas, New York, NY 10036. (866) 316-4814; (212) 512-7467. New York, NY 10016. E-mail: AlzheimersProject@cegny.com. Website: www.hbo.com/alzheimers. PRICE: free online access and free Screening Kit at www.hbo.com/alzheimers.

“Caregivers” is part of The Alzheimer’s Project, which looks at groundbreaking scientific discoveries and seeks to increase public understanding of AD research and caregiving. This multimedia public health series is co-presented by HBO Documentary Films and the National Institute on Aging in association with the Alzheimer's Association, Fidelity Charitable Gift Fund, and the Geoffrey Beene Gives Back Alzheimer's Initiative. It includes a four-part documentary film series focusing on science and research, children touched by AD, and people across the United States with AD and their caregivers. “Caregivers” highlights the daily sacrifices and successes of people who are primary caregivers of loved ones descending into debilitating stages of dementia. “Grandpa, Do You Know Who I Am?,” narrated by Maria Shriver, shows how dementia can affect children and ways in which younger people can relate to older family members with memory problems. Other segments in the series include “The Memory Loss Tapes,” which provides personal views of seven individuals living with AD, and “Momentum in Science,” which takes viewers into the laboratories and clinics of 24 leading scientists and physicians who are working on cutting-edge research advances. The Alzheimer’s Project website offers free access to these films, as well as15 short films about scientists involved in research, interactive channels, discussion guides, tips, fact sheets, and an Alzheimer’s Tribute Wall on Facebook. A companion book, The Alzheimer’s Project: Momentum in Science, published by Public Affairs Books and a set of all films on DVD are also available.

Caring for a Person with Alzheimer's Disease: Your Easy-to-Use Guide from the National Institute on Aging.

Bethesda, MD: National Institute on Aging. June 2009. 136 p.

Available from the Alzheimer's Disease Education and Referral (ADEAR) Center. PO Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380; (301) 495- 3311; FAX: (301) 495-3334. E-mail: adear@nia.nih.gov. Website: www.nia.nih.gov/alzheimers. PRICE: Free print and free online access at www.nia.nih.gov/alzheimers.

This easy-to-use guide from the National Institute on Aging is designed to assist caregivers in understanding and coping with the many challenges of caring for people with AD. Written in plain language, the guide helps readers to understand how AD changes a person, cope with changes, plan for the future, make the home safe for the person with AD, and manage everyday activities like eating, bathing, dressing, and grooming. It also suggests how caregivers can take care of themselves, get help with caregiving, find out about helpful resources (including websites, support groups, government agencies, and adult day care programs), choose the right care facility for the person with AD, learn about common behavior and medical problems of people with AD, and cope with late-stage AD and end-of-life issues. This colorful publication also includes information about joining a clinical trial, a table summarizing medications used to treat AD and related disorders, and a glossary.

Into the Mist: When Someone You Love Has Alzheimer's Disease.

Uetz, D. Philadelphia, PA: Xlibris Corporation. 2005. 309 p.

Available from Xlibris Corporation, International Plaza II, Suite 410, Philadelphia, PA 19113-1513. (888) 795-4274; FAX (610) 915-0294. E-mail: info@xlibris.com. Website: www2.xlibris.com. PRICE: $19.54 (paperback). ISBN: 1413492606.

This book combines information from researchers, experts, and families into a comprehensive guide for AD caregivers. The first part contains the personal accounts of three families caring for a loved one from the earliest stages to the last stages. The stories of Jack, Frank, and Shirley, told by their daughters, illustrate the commonalities and differences among AD patients and the ways their families handle the most difficult challenges. The second part offers information to help families cope with the psychological aspects of AD, making hard choices, behavior problems, and communication difficulties. The third part addresses such topics as the stages of AD, Medicare, Medicaid, long-term care insurance, geriatric care management, the diagnosis of AD, causes and prevention, and drug treatments. The book also has an interview with a leading scientist about the current state of AD research and a glossary of AD-related terms.

Navigating the Alzheimer’s Journey: A Compass for Caregiving.

Sifton, C.B. Baltimore, MD: Health Professions Press. 2004. 688 p.

Available from Health Professions Press. P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. E-mail: custserv@healthpropress.com. Website: www.healthpropress.com. PRICE: $26.95. ISBN: 9781932529043.

This book is a guide for caregivers of people with AD. Drawing on the author’s professional and personal experience in dementia caregiving, it offers practical advice about managing the daily care of someone with dementia while caring for oneself to avoid burnout. Ten chapters address the following topics: (1) caring for the caregiver; (2) living in the moment; (3) basic information about AD and other dementias; (4) communicating with someone who has dementia; (5) creating a supportive environment; (6) maintaining a familiar lifestyle; (7) success with daily life activities; (8) using leisure activities for the person’s "re-creation"; (9) understanding, preventing, and responding to behavioral symptoms; and (10) care planning. The book includes a list of references and forms for recording the patient’s personal information, daily routines, life story, and preferences. References and resources for further information are given.

Remembering Home: Rediscovering the Self in Dementia.

Chaudhury, H. Baltimore, MD: The Johns Hopkins University Press. 2008. 144 p.

Available from The Johns Hopkins University Press. 2715 North Charles Street, Baltimore, MD 21218-4363. (800) 537-5487. Website: www.press.jhu.edu. PRICE: $20.00 paperback. ISBN: 9780801888274.

Research has shown that stimulating early memories can have positive effects for people with dementia and can energize the relationships between such persons and their families, friends, and caregivers. This book emphasizes the importance of home in the lives of adults with memory disorders. It offers insight into the richness and variety of life experiences associated with the idea of home, and suggests ways in which caregivers can encourage reminiscences to improve the quality of life for those with dementia and related disorders. The book advances the goals of affirming the dignity of and reinforcing personhood in adults with severe memory loss. The author, an environmental gerontologist, draws on research, fieldwork, and the stories of persons with dementia and their loved ones to discuss dementia and the concept of self. He shows how recollections of home can reach people with compromised mental capacity and shares techniques designed to spark conversation and stimulate participation in group and one-on-one activities. The author also encourages health care professionals and activity leaders to embrace a personhood-affirming mode of care and provides tools and information for nonprofessional family caregivers who want to connect with, understand, and better appreciate people with dementia.

Communication Resources

Communicating.

New York City, NY: Alzheimer's Association, New York City. 2006.

Available from the Alzheimer's Association, New York City Chapter. 360 Lexington Avenue, 4th floor, New York, NY 10017. (646) 744-2900; FAX: (212) 490-6037. E-mail: helpline@alznyc.org. Website: www.alznyc.org/caregivers/communicate.asp. PRICE: free online access.

This online guide for caregivers offers suggestions to improve communication with people who have AD. First, it explains how AD affects a person’s ability to communicate. Then, it offers tips for communicating with AD patients, including general guidelines for enhancing communication, specific tips for helping AD patients express themselves, and specific tips for helping AD patients understand others. It also offers tips for telling the patient about the diagnosis, for telling other family members and friends about the diagnosis, and for handling tough questions from the person with AD.

Communication: Best Ways to Interact with the Person with Dementia.

Chicago, IL: Alzheimer's Association. 2005. 12 p.

Available from the Alzheimer's Association. 225 North Michigan Avenue, Floor 17, Chicago, IL 60601. (800) 272-3900; FAX: (312) 335-1110. E-mail: info@alz.org. Website: www.alz.org. PRICE: free print copy from local Association chapter and free online access at www.alz.org/national/documents/brochure_communication.pdf.

This booklet offers suggestions to improve communication with a person with AD. People with dementia have more difficulty expressing thoughts and emotions and also have more trouble understanding others. The booklet suggests ways that you can help the person with dementia communicate and ways that you can best communicate yourself. For example, to help the person with dementia communicate, you should be patient, show interest, give the person time to respond, avoid criticizing or correcting, avoid arguing, and encourage unspoken communication. To improve the way you communicate, you should use simple words and short sentences, talk slowly and clearly, give one-step directions, ask one question at a time, patiently wait for a response, repeat information or questions, avoid confusing expressions, and give visual cues. The booklet provides additional suggestions for people with hearing limitations or visual limitations. It also has a list of 10 quick tips for better communication.

Communication Techniques.

New York, NY: Alzheimer's Foundation of America. August 2005. 2 p.

Available from the Alzheimer's Foundation of America, 322 Eighth Avenue, 7th floor, New York, NY 10001. (866) 232-8484. E-mail: info@alzfdn.org. Website: www.alzfdn.org. PRICE: free online access at www.alzfdn.org/EducationandCare/techniques.html.

This brochure offers tips for communicating with a person with Alzheimer’s disease or a related dementia. For example, when discussing the diagnosis, it is important to be sensitive, continue the discussion later if the person denies your explanation, prepare simple answers to questions, offer reassurance, allow the person to express his feelings, and encourage the person to talk to the doctor about concerns. To enhance interactions in general, you should speak in a calm and reassuring tone, talk slowly and distinctly, use simple words, address the person by name, maintain eye contact while speaking, use positive reinforcements such as smiles and a gentle touch, allow enough time for a response, ask only one question at a time, avoid negative statements, use humor whenever possible, and use nonverbal gestures for cueing.

Creating Moments of Joy for the Person with Alzheimer's or Dementia. 4th ed.

Brackey, J. Polk City, IA: Enhanced Moments. 2007. 331 p.

Available from Jolene Brackey, Enhanced Moments, P.O. Box 326, Polson, MT 59860. Phone and FAX: (406) 883-3770. E-mail: jolene@enhancedmoments.com. Website: www.enhancedmoments.com. PRICE: $17.00; ISBN: 1557533660. Also available in audio CD ($30.00) and training DVD ($100.00). Book is also available from Purdue University Press, P.O. Box 388, 30 Amberwood Parkway, Ashland, OH 44805. (800) 247-6553; FAX: (419) 281-6883. E-mail: order@bookmasters.com. Website: www.thepress.purdue.edu. PRICE: $24.95.

This book is a guide to creating moments of joy for people with AD or other forms of dementia. Using illustrative stories, practical suggestions, and inspirational thoughts and prayers, it explores ways to help individuals with dementia enjoy moments of joy by reliving favorite pastimes and fond memories. Section one explains how, due to short term memory loss, people with AD may be living in another time and/or place in their minds and why caregivers need to understand this to respond with understanding and patience. In the middle stages of AD, caregivers need to understand that the person with AD has diminished mental abilities and less control of their emotions. This book suggests ways to let go of high expectations and provide structure and routine. Section two describes strategies for creating positive outcomes. Examples include: remember their greatness, live their truth, use universal reasons, create a sense of belonging, stop correcting them, and blame it on something or someone else. Section three offers suggestions for positive verbal and nonverbal communication, quality connections, and keeping a positive attitude and mood to overcome resistance or difficult situations. Section four explains how to create an environment at home or when moving to a new caregiving residence that provides a sense of comfort and peace. Section five suggests activities that can bring moments of joy to the care recipient and the care provider.

Enhancing Communication.

Available from the Murray Alzheimer Research and Education Program. RBJ Schlegel—UW Research Institute for Aging, University of Waterloo, LHI, 200 University Ave. West, Waterloo, Ontario Canada N2L 3G1. (519) 888-4567 ext. 32920. E-mail: jnmooney@healthy.uwaterloo.ca. Website: www.marep.uwaterloo.ca. PRICE: $1 plus shipping and handling.

This booklet is one of three “By Us For Us” guides, created by a group of people with dementia. It outlines the main communication-related challenges of people with dementia. It explores communication challenges that can occur with family and friends, in social situations, and when communicating with health care professionals. The guide provides practical solutions and emphasizes the importance of using a wide range of communication strategies to make opinions, feelings, and experiences known. It also suggests ways that family caregivers and health professionals can enhance communication with people with dementia.

The Guide for Providing Quality of Life for Alzheimer Patients: Communicating With the Alzheimer Patient.

Baltimore, MD: Video Press. 2003. DVD.

Available from Video Press, University of Maryland School of Medicine. 100 North Greene Street, Suite 300, Baltimore, MD 21201-1563. (800) 328-7450; FAX: (410) 706-8471. E-mail: videpressmail@som.umaryland.edu. Website: www.videopress.org. PRICE: $150.00 purchase; $75.00 rental. Order no. AD202.

This 20-minute DVD is part of a series on providing quality of life for patients with AD. It focuses on the challenges of communicating with AD patients. In an interactive discussion with staff, Dr. Peter V. Rabins, a geriatric psychiatrist at Johns Hopkins School of Medicine, emphasizes the importance of establishing a link to someone who may be confused, frightened, frustrated, angry, withdrawn, or unresponsive. He explains the importance of communication and offers tips about how to enter into the AD patient’s world and “learn their language.” He also advises staff to be patient, keep it simple, and use repetition.

Happy New Year to You! A Read-Aloud Book for Memory-Challenged Adults.

Burdick, L. Baltimore, MD: Health Professions Press. 2006. 28 p.

Available from Health Professions Press, P.O. Box 10264, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. E-mail: custserv@healthpropress.com. Website: www.healthpropress.com. PRICE: $18.95. ISBN: 9781932529203.

This unique read-aloud book was written specifically to stimulate conversation with adults who have memory impairment caused by AD or another memory disorder. Designed to encourage communication and engagement between the caregiver and the person with the memory disorder, it is large enough to fit across the laps of two people sitting side by side. The family member or caregiver and reading companion can read the book together, sharing thoughts, memories, and songs evoked by the words and pictures. The book has one or two pages devoted to each month of the year. Each month has a different theme, with one short, large-print sentence and a colorful illustration. January’s theme is New Year, February’s is Valentine’s Day, March’s is windy days, April’s is rainy days, May’s is flowers, June’s is weddings, July’s is fireworks, August’s is picnics, September’s is school, October’s is colorful leaves, November’s is Thanksgiving, and December’s is the winter holidays. The book provides sample conversation prompts and songs for each theme as well as general tips for using the book for fun and meaningful interaction.

How to Communicate with Alzheimer's: A Practical Guide & Workbook for Families.

Kohler, S. Venice, CA: Granny's Rocker Publishing. 2004. 152 p.

Available from Bell, Book, and Candle Shop. (866) 743-9624. E-mail: info@BellBookAndCandleShop.com. Website: www.BellBookAndCandleShop.com. PRICE: $17.95, plus $3.75 shipping and handling. ISBN: 0975316508.

This book is designed to help family members communicate with a loved one who has AD, dementia, confusion, or memory loss. It has an easy-to-read, how-to format with chapter dividers and a summary of key points at the end of each chapter. The author, a licensed speech pathologist, discusses the importance of communication, the deterioration of communication skills as AD progresses, the communication strengths of people with AD, communication strategies that are effective with people who have AD, activities to do with people who have AD, solutions for difficult behaviors, and understanding the caregiving role. One chapter lists organizations, agencies, publications, and other resources for information and support. Appendices provide a variety of ideas for stimulating communication, including space for keeping a personal history, topics for conversation, jokes, song lyrics, activities to do at home, and resources and organizations for further information and services.

Learning to Speak Alzheimer's: An Introduction to the Habilitation Approach to Care (DVD).

Chicago, IL: Terra Nova Films, 2008. (32-min. DVD based on the book of the same title by Joanne Koenig Coste).

Available from Terra Nova Films. 9848 South Winchester Avenue, Chicago, IL 60643. (800) 779-8491; FAX: (773) 881-3368. E-mail: tnf@terranova.org. Website: www.terranova.org. PRICE: $179.00 purchase; $59.00 rental fee.

Based on the popular book of the same title, this DVD introduces the habilitation approach to caring for a person with AD. It demonstrates how caregivers can apply the basic concepts of habilitation, defined as caregiving that embraces the remaining abilities of the person with dementia, to create a suitable environment in which the person can lead a quality life through proactive adjustments. Caregivers will learn how to (1) communicate better with individuals with AD, (2) reduce emotional or aggressive-protective reactions by identifying and removing frustration triggers, and (3) engage the person in life-enriching activities that promote positive memories and boost emotional stability and self-esteem. The video offers practical information for caregivers in nursing home, assisted living, hospital, and home settings.

The Sunshine on My Face: A Read-Aloud Book for Memory-Challenged Adults

Burdick, L. Baltimore, MD: Health Professions Press. 2005. 32 p.

Available from Health Professions Press. P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. E-mail: custserv@healthpropress.com. Website: www.healthpropress.com. PRICE: $17.95. ISBN: 9781932529098.

This read-aloud book is designed to promote meaningful interaction with people with dementia. Its colorful illustrations are accompanied by short, easy-to-read, large-print text that describes universally appealing experiences such as feeling the warmth of the sun on your face, listening to music, watching children play, and going for a ride in the countryside. Styled with the simplicity of a children’s book but created for adults, it provides opportunities for conversation and reminiscing, diversion from an upsetting episode, intergenerational exchanges with children, and social interaction between residents and staff. The book includes tips on how to use the material, conversation prompts that are useful for all pages, and prompts that are useful for specific pages.

Validation Techniques for Dementia Care: The Family Guide to Improving Communication.

de Klerk-Rubin, V. Baltimore, MD: Health Professions Press. 2008. 144 p.

Available from Health Professions Press, P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. E-mail: custserv@healthpropress.com. Website: www.healthpropress.com. PRICE: $18.95. ISBN: 9781932529371.

This handbook is designed to teach family and professional caregivers how to use Validation techniques to overcome the communication and relationship challenges of caring for older adults with dementia. The Validation 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. The book provides the information and guidance needed to reframe interactions with older adults and to successfully implement proven Validation strategies. Specific verbal and nonverbal communication techniques are explained in detail and illustrated in photographs. The book also has 10 real-life case studies that demonstrate how to use the approach and how it can relieve common problems such as confusion about the current year, the inability to recognize caregivers, repetitive questions, and the challenges of intergenerational interactions. Appendices provide information on additional Validation resources, a handout for family caregivers, and centering exercises.

When Words Have Lost Their Meaning: Alzheimer's Patients Communicate Through Art.

Abraham, R. Westport, CT: Praeger Publishers. 2005. 224 p.

Available from ABC-CLIO Greenwood, P.O. Box 6926, Portsmouth, NH 03802-6926. (800) 225-5800; FAX: (877) 231-6980. E-mail: customer-service@greenwood.com or ruth@alzheimersart.com. Website: www.abc-clio.com or www.alzheimersart.com. PRICE: $55.00. ISBN: 027597989X.

This book shows how art can provide people with AD with a way to express their thoughts and emotions, when they can no longer communicate well verbally and words have lost their meaning. The author believes it is one’s moral obligation to provide elders with this tool, so they will not be prematurely deemed beyond interaction. She includes chapters on the cognitive, emotional, and behavioral changes in AD that can affect a person’s ability to communicate; the contributions of art therapy to AD patients and their caregivers; guidelines for conducting art therapy with individuals and groups; theoretical perspectives on art therapy for AD patients; three case studies demonstrating the therapeutic impact of art in AD; opportunities for promoting the power of art as therapy; and a personal story about the author’s mother and her struggle with AD. The book includes more than 70 drawings and paintings by people with AD and case histories of the men and women who created them. Illustrations, index, references.

Behavior Resources

Behavioral and Psychiatric Symptoms of Alzheimer’s Disease.

Chicago, IL: Alzheimer's Association. March 2008. 4 p.

Available from the Alzheimer's Association. 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-3900. (800) 272-3900; FAX: (866) 699-1246. E-mail: info@alz.org. Website: www.alz.org. PRICE: free print and free online access at www.alz.org/national/documents/topicsheet_behavepsych.pdf.

People with AD experience two different types of symptoms. The first are cognitive symptoms, which disrupt memory, language, and thinking. The second are behavioral and psychiatric symptoms, which can cause personality changes and agitation. Many people with AD and their families find behavioral symptoms to be the most challenging and distressing effects of the disease. These symptoms are often a key factor in the decision to place a loved one in residential care, and they often have a significant impact on the care and quality of life for people living in long-term care facilities. This fact sheet is designed to help patients and their families recognize the behavioral symptoms of AD, understand the causes, and learn about treatment options. The first section describes the common behavioral and psychiatric symptoms of AD. The second section discusses the causes of behavioral and psychiatric symptoms, which may include medication, certain types of medical conditions, and environmental influences. The rest of the fact sheet discusses treatments, including nondrug management strategies, environmental adaptations, tips for managing agitation, and medications such as antidepressants, antipsychotics, anti-anxiety drugs, and medications for sleep problems.

Behaviors: What Causes Dementia-Related Behavior Like Aggression and How to Respond.

Chicago, IL: Alzheimer's Association. 2005. 12 p.

Available from the Alzheimer's Association. 225 North Michigan Avenue, Floor 17, Chicago, IL 60601. (800) 272-3900; FAX: (866) 699-1246. E-mail: info@alz.org. Website: www.alz.org. PRICE: free print copy from local Association chapter and free online access at www.alz.org/living_with_alzheimers_behaviors.asp.

This booklet discusses some of the difficult behaviors that occur in people with dementia and how to respond to them. First, it outlines some of the factors such as physical discomfort or frustrating interactions that may cause the behavior. It also describes a three-step approach to identifying common behaviors, determining what may have triggered it, and responding effectively. Then, it offers specific recommendations for responding to five common dementia-related behaviors: aggression, anxiety or agitation, confusion, repetition, and suspicion. For example, if a person is exhibiting aggressive behaviors, you should try to identify the immediate cause, think about how the person is feeling, don’t get upset or angry, and try a relaxing activity. The booklet also has a list of 10 quick tips for responding to behaviors.

Caregiver's Guide to Understanding Dementia Behaviors (Guia del cuidador para entender la conductade los pacientes con demencia).

San Francisco, CA: Family Caregiver Alliance. 2004.

Available from the Family Caregiver Alliance. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; FAX: (415) 434-3508. E-mail: info@caregiver.org. Website: www.caregiver.org. PRICE: free online access at www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=391.

This fact sheet, available in English and Spanish, offers practical advice for dealing with the communication and behavioral problems commonly encountered when caring for a person with dementia. First, it provides 10 tips for communicating with a person with dementia. For example, it suggests that you set a positive mood for interaction, get the person’s attention, ask simple questions, wait patiently for a reply, and break activities into a series of steps. Then, it presents general guidelines for understanding and coping with difficult behaviors, followed by suggestions for specific problems such as wandering, incontinence, agitation, repetitive speech or actions, paranoia, sleeplessness and sundowning, eating, bathing, dressing, hallucinations, and sexually inappropriate behavior. Finally, it lists publications, organizations, and programs for additional information and assistance.

Family Guide to Alzheimer's Disease. Volume 2: Behavior Issues (DVD).

Nashville, TN: LifeView Resources, Inc. 2004.

Available from LifeView Resources, Inc., P.O. Box 290787, Nashville, TN 37229-0787. (800) 395-5433; FAX (615) 781-9692. E-mail: info@lifeviewresources.com. Website: www.lifeviewresources.com. PRICE: $24.95 for VHS or DVD video, or $99.95 for 5-volume set.

This 67-minute DVD, part of a series for families affected by AD, addresses the behavioral changes that are commonly seen in this disease. First, it provides an overview of typical behavioral issues in AD, approaches to dealing with behavior problems, and possible causes of these behaviors. Then, it deals with specific behaviors including agitation, aggression, hallucinations, wandering, sleeplessness or sundowning, incontinence, and socially inappropriate behaviors. Finally, it describes two strategies, redirection and “fiblets,” for dealing with challenging behaviors. The videotape comes with a guide booklet that summarizes the material as well as a Spanish-language track.

Safe Return: Alzheimer's Disease Guide for Law Enforcement.

Chicago, IL: Alzheimer's Association. 2006. 5 p.

Available from the Alzheimer's Association, 225 North Michigan Avenue, Floor 17, Chicago, IL 60601-7633. (800) 272-3900; FAX: (866) 699-1246. E-mail: info@alz.org. Website: www.alz.org/national/documents/SafeReturn_lawenforcement.pdf. PRICE: free print and free online access.

This guide is designed to help law enforcement personnel understand AD and how it affects a person’s thinking and behavior. First, it discusses the various situations in which law enforcement personnel are likely to become involved with a person with AD, including searching for or finding an individual who has wandered off and become lost. It also talks about the Alzheimer’s Association Safe Return program and how police officers can check a wandering person for the Safe Return ID number and call the emergency 800-number. Other common encounters with people with AD include auto accidents, erratic driving, false reports and victimization, indecent exposure, shoplifting, and suicide and homicide. The guide also provides tips for law enforcement personnel on how to communicate and interact with someone who may have AD, tips for what to do when a person with dementia is reported missing, a list of the 10 warning signs of AD, and general facts about AD.

March, 2009

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Mon-Fri, 8:30 am-5:00 pm Eastern Time

or send an email to: adear@nia.nih.gov