Families 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 individual and how to respond to their difficult behaviors. This resource list gives caregivers an overview of some of the many books, manuals, reference guides, and information packages that may assist family members with communication and behavior issues. These resources have been selected from the Alzheimer’s subfile of the online Combined Health Information Database (CHID), found at http://chid.nih.gov. The “AZ” identification number at the end of each item description can be used to search CHID for the item.
Contents
Managing Communication Problems
1. Alzheimer's: Finding the Words: A Communication Guide for Those Who Care
Hodgson, H. New York, NY: John Wiley & Sons, Inc. 1995. (1998 paperback edition available from online book dealers) 240 p.
Available from John Wiley & Sons, Inc., One Wiley Drive, Somerset, NJ 08875. (800) 225-5945; (732) 469-4400; FAX (732) 302-2300; WEB: www.wiley.com. Price: $14.95 plus shipping and handling. ISBN: 0471346578.
This book is designed to help caregivers communicate with people who have Alzheimer's disease (AD). The first half of the book focuses on how speech is affected by AD and provides an overview of AD, including early signs, characteristic symptoms, the evaluation process, and the speech changes that occur during the early, moderate, severe, and final stages of the disease. It also describes the types of speech transmission problems that are caused by AD, the types of speech reception problems seen in AD, and other causes of speech deterioration. The second half of the book focuses on caregiver attitudes and behaviors; and discusses common obstacles to caregiving and how to overcome them; common fears, emotions, and behaviors that affect communication with a person who has AD; and factors affecting communication issues such as divergent speech, reality monitoring, boredom, agitation, emotional self-defense, the use of scripts, and music therapy. The book includes a list of communication tips, a short-term memory questionnaire, a glossary, and a bibliography. (AZBK06220)
2. Best Friends Approach to Alzheimer's Care (2nd ed. )
Baltimore, MD: Health Professions Press, Inc. 2003. 250 p.
Available from the Health Professions Press. P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. Website: www.healthpropress.com. PRICE: $24.95. ISBN: 1878812351.
This book describes the ‘Best Friends’ approach to caring for people with Alzheimer’s disease (AD) and other dementias. This approach is based on the view that qualities of good friendship contain important lessons for AD care. In the Best Friends model, the best friend learns about the patient’s history and personality, participates in activities with the patient, listens and talks to the patient, treats the patient as an equal, and works at building a good friendship. This book describes the experience of AD from the patient’s perspective, provides an overview of basic facts about the disease, and presents the Best Friends approach to assessing the patient’s strengths and weaknesses. Then, it describes the Best Friends model of care, including patient rights under this model, elements of good friendship and their implications for AD care, the importance of the patient’s life story in providing care, and the ‘knack’ of providing AD care. It explains how to apply the Best Friends approach in common caregiving situations; how to communicate effectively; and how to select activities that are meaningful, enjoyable, and part of the daily routine. The book also provides examples of the Best Friends model in action in home care, adult day care, and long-term care facilities. Finally, it describes how the Best Friends approach may be applied to caring for the caregiver’s needs. Appendices include organizations for families and caregivers, selected references, short biographies of persons who shared his or her story, and an index. (AZBK09714)
3. Coping with Communication Challenges in Alzheimer's Disease
San Diego, CA: Singular Publishing Group, Inc. 1993. 211 p.
No longer available from Thompsen Learning, P.O. Box 6904, Florence, KY 41022-6904, but is available from online book dealers, such as Alzheimer’s Bookstore in affiliation with Amazon.com. Website: www.alzheimersbooks.com. ISBN: 1879105764.
This book provides practical advice and information to facilitate communication between persons with Alzheimer's disease (AD) and their caregivers, between family members and health care professionals, and between and among family members and friends. The first two chapters provide an overview of the important features of communication and the effects of dementia on communication functions such as memory, thinking, speech, and language. The next three chapters provide more detailed information about the patterns of communication changes seen in early, middle, and late stages of AD. Chapter six suggests general principles and guidelines for enhancing communication with a person with dementia at any stage of the disease. The next three chapters describe specific strategies for maintaining communication with persons with mild, moderate, and severe dementia. The remaining chapters discuss such topics as support groups and other opportunities for communication, communicating with health care professionals, communicating with legal and financial advisors, communicating with government and private service agencies, and the relationship between problem behaviors and the communication difficulties found in AD. A list of resources for further information and assistance is included. (AZBK04374)
4. Creating Moments of Joy for the Person With Alzheimer’s or Dementia
Polk City, IA: Enhanced Living. 1999. 175 p.
Available from Enhanced Moments. PO Box 383, Polk City, IA 50226. (888) JOY-1776, (515) 984-6620; FAX: (515) 984-6620. Website: www.enhancedmoments.com. PRICE: $17.00 plus $5.50 shipping. ISBN: 0967232600 (first edition). Third edition (2003), Audio CD, video CD, and training DVD also available.
This book is a guide to creating moments of joy for people with Alzheimer's disease (AD). 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 the importance of understanding where and when the individual is living in his or her mind. Section two presents tools for creating positive outcomes. Section three explores how to initiate effective communication. Section four explains how to create an environment that provides comfort. Section five addresses daily activities that can bring joy to the care recipient and provider. (AZBK08561)
5. Guide for Providing Quality of Life for the Alzheimer Patient: Communicating With the Alzheimer Patient
Baltimore, MD: Video Press. 2003. (videocassette).
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: gbillups@umaryland.edu. Website: www.videopress.org. PRICE: $150.00 purchase; $75.00 rental.
This videotape is part of a three-tape series on providing quality of life for patients with Alzheimer’s disease (AD). (See AZAV09534 for the segment on recognizing pain.). This tape focuses on the challenges of communicating with AD patients. In an interactive discussion with staff, Dr. Peter V. Rabins 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. (AZAV09521)
6. Hearing the Voice of People With Dementia: Opportunities and Obstacles
Goldsmith, M. Philadelphia, PA: Taylor and Francis, Inc., (Jessica Kingsley Publishers). 1996. 182 p.
Available from Taylor and Francis, Inc., (Jessica Kingsley Publishers). 400 Market Street, Suite 400. Philadelphia, PA 19106. (215) 922-1161; FAX: (215) 922-1474;E-mail: orders@jpk.com. WEB: www.jkp.com. PRICE: $27.95. ISBN: 1853024066.
This book explores the ways in which people with Alzheimer's disease and other dementias can communicate their views about their illness, their preferences, and their satisfaction with the services they receive. It presents evidence that communication with people with dementia is possible and explains how such communication can help family caregivers, professionals, nursing staff, and volunteers can become more responsive to the individual wishes of the people they care for. It examines some of the obstacles to communication, factors that affect the ability to communicate, and strategies for facilitating communication. The book explores what happens to one's personal identity in advancing dementia, the different ways people are affected by dementia, the extent to which communication is possible, and the various forms it may take. Other topics include the empowerment of people with dementia, the importance of taking time and slowing the pace of communication, the value of knowing the person's life story, the effects of the environment on communication, forms of nonverbal communication, communicating through challenging behaviors, the value of therapeutic group work, and issues in communicating the diagnosis of dementia. Table, appended discussion paper, references, and index. (AZBK07309)
7. Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing With the Disease
New York, NY: Houghton Mifflin Company. 2003. 240 p.
Available from local and online book dealers. Houghton Mifflin Company, 215 Park Avenue South, New York, NY 10003. (212) 420-5850. For an online description of the book see www.houghtonmifflinbooks.com in the Medical-Caregiving section. PRICE: $24.00. ISBN: 0618221255 paperback.
This book describes a positive approach to caring for people with Alzheimer’s disease (AD) that emphasizes relating to patients in their own reality. This method, which the author calls ‘habilitation,’ is based on five key tenets: make the physical environment work, know that communication remains possible, focus only on remaining skills, live in the patient’s world, and enrich the patient’s life. The author developed these tenets while caring for her husband, who developed a related disease in his forties. This book has three parts. Part 1 provides information about getting an accurate diagnosis, what to expect as the disease progresses, the habilitation model of caregiving, and the importance of seeing the world from the patient’s perspective. Part 2 explains how to apply the tenets of habilitation to creating a positive milieu in which the patient can enjoy feelings of success. It includes practical suggestions for modifying the physical environment, communicating with the patient, performing activities of daily living, dealing with behavior changes, and enjoying leisure activities. Part 3 discusses the need for caregivers to take care of themselves and highlights the home and facility based care options most conducive to the habilitation principles. The book includes a glossary, food suggestions for people with AD, and list of resources. (AZBK09736)
8. Navigating the Alzheimer’s Journey: A Compass for Caring
Baltimore, MD: Health Professions Press. 2004. 652 p.
Available from the Health Professions Press. P.O. Box 10624, Baltimore, MD 21285-0624. (410) 337-9585; FAX: (410) 337-8539. Website: www.healthpropress.com. PRICE: $32.95. ISBN: 1878812874.
This book is a guide for caregivers of people with Alzheimer’s disease (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. (AZBK09696)
9. Rush Manual for Caregivers (6th ed.)
Chicago, IL: Rush Alzheimer's Disease Center. 2004. 116 p.
Available from the Rush Alzheimer's Disease Center, Rush Presbyterian-St. Luke's Medical Center. 710 South Paulina Street, Suite 8 North, Chicago, IL 60612-3872. (312) 942-4463. Website: www.rush.edu/rumc/page-R12399.html. PRICE: $14.95 for printed version, and free online access.
This manual provides an overview of the issues that family members with relatives with Alzheimer's disease (AD) may need to address to cope with dementia. Chapters describe dementia and give the stages of AD; communication difficulties experienced and suggests ways to bridge the communication gap that dementia creates; the needs of the family in coping, including children and legal matters that may need attention; guidelines for providing daily care (hygiene, home safety, mobility and exercise, and nutrition); and important considerations when handling health and behavior problems. The manual's final chapter addresses ways to obtain outside help, such as from community-based and government resources, and considerations to be addressed when selecting a nursing home or hospice care. The manual concludes with lists of selected readings for families with a member who has dementia, and for professionals, concerning such areas as activities, public policy, and nursing home care. (AZBK04965)
10. Steps to Enhancing Communication: Interacting with Persons with Alzheimer's Disease
Chicago, IL: Alzheimer's Association. 1998. 15 p.
Available from the Alzheimer's Association. 225 North Michigan Avenue, Suite 1700, Chicago, IL 60601-7833. (800) 272-3900; TDD (312) 335- 8882; FAX (312) 335-1110. E-mail: info@alz.org. WEB: www.alz.org. PRICE: $8.00 for 50 print copies; free online access. Order Number: ED 310Z.
This brochure is intended to help caregivers of patients with Alzheimer's disease (AD) recognize communication problems and to enhance their communication. It has been observed that individuals with AD often experience difficulty expressing themselves and understanding others. The first section focuses on identification of communication problems. For example, signs that a problem exists include repeated use of familiar words, reliance on nonverbal gestures, and difficulty organizing words logically. Suggestions for listening to and communicating with an AD patient follow, and suggestions include avoiding arguments, showing interest, focusing on feelings, talking slowly and clearly, and providing visual cues. Special considerations for communicating with the visually and hearing impaired conclude the brochure. (AZBR07757)
11. Talking to Alzheimer's: Simple Ways to Connect When You Visit With a Family Member or Friend
Oakland, CA: New Harbinger Publications. 2001. 161 p.
Available from New Harbinger Publications. 5674 Shattuck Avenue, Oakland, CA 94609. (800) 748-6273; (510) 652-0215: FAX: (510) 652-5472. Website: www.newharbinger.com. PRICE: $12.95. ISBN: 1572242701.
This book offers practical guidance in communication skills for people visiting family or friends with Alzheimer's disease (AD). Focusing on both the dignity of the individual with AD and the continuing potential for mutually rewarding relationships, the book provides numerous examples of ways to create meaningful conversations and close connections. It is organized into eight chapters: (1) getting started; (2) dealing with specific types of situations such as repetition, starting and ending conversations, asking questions, saying 'no,' and dealing with painful emotions; (3) responding to uncomfortable questions and requests; (4) do's and don'ts of interactions; (5) taking care of the visitor; (6) helping grandchildren visit; (7) helping staff get to know the individual; and (8) additional tips to make visits count. A list of organizations, websites, books, newsletters, and other resources is included. (AZBK09094)
12. Validation Breakthrough: Simple Techniques for Communicating With People With Alzheimer's-Type Dementia (2nd ed.)
Baltimore, MD: Health Professions Press. July 2003. 352 p.
Available from the Health Professions Press, P.O. Box 10624. Baltimore, MD 21285-0624. (888) 337-8808; FAX: (410) 337-8539. Website: www.healthpropress.com. PRICE: $29.95. ISBN: 1878812815.
This book demonstrates the use of Validation therapy with people who have Alzheimer’s disease (AD) and related dementias. Validation therapy is a communication approach that can help professional and family caregivers to improve their relationships with care recipients and manage challenging behaviors. The book has three main parts. Part 1 describes the normal process of aging and development, characteristics of the Resolution Stage of life, and the principles and techniques of Validation. It presents case histories of people in progressive stages of Resolution (malorientation, time confusion, repetitive motion, and vegetation) and shows how Validation helped both these individuals and their caregivers. It also discusses the use of Validation with people with early-onset AD, research on the effects of Validation, and the differences between validation and other interventions often used with this population. Part 2 presents composite cases illustrating the use of Validation techniques in real-life situations. These cases describe very old people in different stages of Resolution and various care settings. Part 3 explains how to set up and conduct Validation groups and answers frequently asked questions about Validation. An appendix presents the experiences of professionals using Validation therapy in the United States and abroad. (AZBK09653)
Managing Behavioral Problems
1. Behaviors Associated With Dementia
In: Houts, P.S. and Rubenstein, L.Z., eds. Eldercare at Home. A Comprehensive Guide for Family Caregivers. New York, NY: AGS Foundation for Health in Aging. April 30, 2004 . (chapter 18) 12 p.
Available from the Fry Communications, Inc., The American Geriatrics Society. 800 West Church Road, Mechanicsburg, PA 17055. (800) 334-1429, ext. 2529; FAX: (717) 691-1493. E-mail: staff@healthinaging.org. Website: www.healthinaging.org/public_education/eldercare or www.frycomm.com/ags/eldercare PRICE: free online access; $19.95 workbook plus $4.50 shipping and handling; $149.00 for presentation package (CD ROM with PowerPoint slides, handouts, workbook) plus $6.00 shipping and handling.
This book chapter offers advice to caregivers on managing behaviors of older people at home associated with dementia. It includes sections on understanding the problem, when to get professional help, what you can do to help, carrying out and adjusting your plan, and checking on progress. Suggestions for the family caregiver include: provide stimulation and activity, use medicines with caution, keep a diary of disturbing behaviors, make a routine and stick with it, use visual cues, give extra help when there are changes in the care recipient’s life, learn why the person wanders, avoid questions the person cannot answer, have realistic expectations, organize pleasant activities, use humor and distraction, and take care of yourself. The authors recommend getting professional help immediately if the person’s behavior threatens someone’s safety, and contacting the doctor or nurse during office hours if the person experiences sudden changes in behavior, becomes verbally abusive, has hallucinations or delusional thinking, or is depressed. (AZDC09631)
2. Caregiver's Information Pack
Cookeville, TN: C-Mac Informational Services, Inc. 2003-2004. 28 p.
Available from C-Mac Informational Services, Inc. 120 Clinton Lane, Cookeville, TN 38501. E-MAIL: caregiver_cmi@hotmail.com. Website: www.caregivernews.org. PRICE: $9.95.
This caregiver's information pack is intended to assist families of people with Alzheimer's disease (AD) in providing daily care for their relatives and making appropriate decisions and arrangements for their future well-being. One part provides an overview of AD, its symptoms, and changes that may occur as the patient progresses from the early through the middle and late stages of the disease. Another part offers suggestions for planning ahead regarding legal and financial matters; dealing with caregiver stress; preparing to care for the patient at home; working with dementia patients on a day-to-day basis; and coping with common behaviors such as confusion, suspiciousness, catastrophic reactions, wandering, communication problems, delusions, physical difficulties, incontinence, and sundowning. The information pack also discusses illnesses and injuries, the use of medications, ways of making the home safe, day-care programs, the issue of when a dementia patient should stop driving, how to care for the caregiver, how to select an elder law attorney, and the importance of documenting the patient's wishes through advance directives (living wills, health care proxies, and powers of attorney). (AZBR09350)
3. Caring For a Person with Memory Loss and Confusion: An Easy Guide For Caregivers
Santa Cruz, CA: Journeyworks Publishing. 2002. 32 p.
Available from Journeyworks Publishing. PO Box 8466, Santa Cruz, CA 95061-8466. (800) 775-1998; (831) 423-1400; FAX (831) 423-8102; WEB: www.journeyworks.com. PRICE: $3.95 plus $0.40 shipping. ISBN: 156885059X. Also available in Spanish.
This easy-to-read guide is designed for family caregivers and home health aides caring for people with any form of brain impairment, including Alzheimer's disease, Parkinson's, or stroke-related dementia. It provides practical, easy-to-read information on day-to-day tasks of caregiving. The guide discusses the basics of daily care and offers advice about the following issues: adapting everyday activities, coping with anxiety and restlessness, creating a safe environment, dealing with wandering, keeping safe when anger is a symptom, making bathing and personal care easier, making mealtime easier, managing bladder and bowel problems, taking steps to improve communication, and getting a better night's sleep. It also includes suggestions about self-care for the caregiver. Also available in Spanish. (AZBK05986)
4. Caring for People With Challenging Behaviors: Essential Skills and Successful Strategies in Long-Term Care
Baltimore, MD: Health Professions Press. February 2005. 164 p.
Available from Health Professions Press, P.O. Box 10624, Baltimore, MD 21285-0624. (888) 337-8808; (410) 337-9585; FAX: (410) 337-8539. Website: www.healthpropress.com. PRICE: $32.95. ISBN: 1878812912.
This book helps professional caregivers find effective ways to prevent, reduce, or eliminate the disruptive behaviors of residents in long-term care settings. Using vignettes of readily recognizable resident types, including those with dementia and other mental disorders, this guidebook helps staff understand what triggers and reinforces challenging behaviors. Solutions are derived by identifying the ‘ABCs’ of behavior (antecedents, behaviors, and consequences), and using practical communication techniques and other effective psychological approaches to encourage positive behavior. The book includes advice to help staff recognize and manage on-the-job stressors; avoid common intervention mistakes; respond to obstacles to effective intervention; promote teamwork and improve interpersonal relations; set and execute realistic, achievable goals in treatment planning; and encourage residents’ autonomy. Written in easy-to-understand language, the book can be used as a self-help tool, a curriculum for in-services, or a training guide for students. It includes numerous handouts and displays, exercises, blank forms, bibliography, and an index. (AZBK09867).
5. Fact Sheet: Caregiver’s Guide to Understanding Dementia Behaviors
San Francisco, CA: Family Caregiver Alliance. 2004. 8 p.
Available from the Family Caregiver Alliance, National Center on Caregiving. 180 Montgomery Street, Suite 1100, San Francisco, CA 94104. (800) 445-8106; (415) 434-3388; FAX: (415) 434-3508. E-mail: info@caregiver.org. Website: www.caregiver.org. PRICE: free online access, and $1.00 for print copy.
This fact sheet offers practical strategies for dealing with the communication and behavioral problems commonly encountered when caring for a person with dementia. First, it provides 10 tips for improving communication with a person with dementia. 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 recommended readings, resources, and other publications for additional information. (AZDC09668)
6. Family Guide to Alzheimer’s Disease. Volume 2: Behavior Issues
Nashville, TN: LifeView Resources, Inc. 2004.
Available from LifeView Resources, Inc., P.O. Box 290787, Nashville, TN 37229-0787. (800) 395-5433. Website: www.lifeviewresources.com. PRICE: $24.95 for VHS or DVD video, or $99.95 for 5-volume set.
This videotape or DVD, part of a series for families affected by Alzheimer’s disease (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. (See also AZAV09660 and AZAV09661 for other videos and DVDs in the set). (AZAV09659)
7. Guide to Alzheimer's Disease
Boston, MA: Harvard Health Letter. 2002. 44 p.
Available from the Harvard Medical School Health Publications Group. PO Box 421073, Palm Coast, FL 32142. (800) 829-9045; (877) 649-9457. E-mail: HarvardProd@strategicfulfillment.com. WEB: www.health.harvard.edu/
special_health_reports/A_Guide_to_Alzheimers_Disease.htm. PRICE: $16.00 (includes shipping and handling). To obtain multiple-copy discount rates, contact the publisher. Available in print and electronic format.
This report describes the signs, possible causes, alternative diagnoses, and therapies that can help caregivers understand Alzheimer' s disease (AD). Topics include: the prevalence of AD; differences among forgetfulness, AD, and other dementias; AD symptoms and stages; genetic, epidemiological, and clinical research on possible causes of AD; causes and treatments of dementias; making a definitive diagnosis of AD; and therapy for AD and behavior problems. An appendix provides practical advice on day-to-day tasks (bathing, dental care, dressing and grooming, mealtime, toileting, and sleeping). A glossary and list of resources conclude the report. (AZDC08672)
8. Healing Arts Therapies and Person-Centered Dementia Care
Philadelphia, PA: Jessica Kingsley Publishers. 2002. 137 p.
Available from Special Sales Department, Taylor and Francis-Routledge Books, Inc. 29 West 35th Street, 10th floor, New York, NY 10001-2299. (800) 797-3803, ext. 7856; (212) 216-7856; FAX: (212) 244-1563. E-mail: Brian.Roach@taylorandfrancis.com. Website: www.routledge-ny.com. PRICE: $19.95. ISBN: 184310038X.
This book for healing arts therapists and health care professionals offers practical advice on providing person-centered dementia care. It emphasizes the importance of putting the individual before the illness to provide holistic, person-centered support for people with dementia. The contributors are practicing healing arts therapists who show how art therapy, dance/movement therapy, and music therapy can be incorporated into person-centered care to promote improved memory, reduced anxiety, increased self-esteem, better communication, and successful group interaction. They use case studies to demonstrate the ways in which therapists can encourage engagement of people with dementia with sound, touch, movement, and visual art forms. (AZBK09623)
9. How to Care for Aging Parents (2nd ed.)
New York, NY: Workman Publishing Company, Inc. 2004. 691 p.
Available from the Workman Publishing Company, Inc. 708 Broadway, New York, NY 10003-9555. (212) 254-5900; FAX: (2120 254-8098. E-mail: info@workman.com. Website: www.workman.com. PRICE: $18.95. ISBN: 0761134263.
This book is a comprehensive resource for people caring for aging parents. It addresses such topics as talking with parents about their future, adjusting to new roles, caring for the caregiver, healthy aging, tips for daily living, getting help from family and friends, using community and home care services, working with the doctor, physical and mental problems in older age, coping with hospital stays, finance and insurance issues, legal matters, relocating to a new care setting, caring for a parent with dementia, death and end-of-life care, funerals and grieving. The book includes new sections on housing options, alternative therapies, balancing career and caregiving, and dealing with difficult parents. Three chapters are devoted to Alzheimer’s disease (AD) and related dementias. A chapter on the aging brain explains the differences between normal age-related brain changes and dementia, the early signs of dementia, the stages of AD, diagnosis, and treatment. Another chapter offers suggestions to help make living with dementia easier for both the caregiver and the parent. A third chapter provides tips for managing daily activities and coping with behavior problems. At the end of the book is a 100-page ‘Yellow Pages’ guide to resources and services in the eldercare industry. (AZBK09746)
10. Mayo Clinic on Alzheimer's Disease: Practical Answers on Memory Loss, Aging, Research, Treatment and Caregiving
Rochester, MN: Mayo Clinic Health Information. 2002. 210 p.
Available from Mayo Clinic Bookstore. P.O. Box 3301, Big Sandy, TX 75755-9343. (800) 291-1128. E-mail: customerservice@mayopublications.com. Website: http://bookstore.mayoclinic.com. PRICE: $16.95 retail price; $9.50 per book for 25 to 49 copies, plus shipping and handling. ISBN: 1893005224.
This book discusses current knowledge of Alzheimer's disease (AD) and its relationship to other forms of dementia. It also provides an overview of treatment and caregiving. Much of the information comes directly from the experience of physicians, psychiatrists, neurologists, and allied healthcare professionals at the Mayo Clinic. Topics include: normal aging and AD, how the brain works and what can go wrong, how AD affects a person and how it progresses, what causes AD, how AD is diagnosed , treatments for the symptoms of AD, new directions in AD research, becoming a caregiver, day to day care, and planning for long term care. A quick guide for caregivers offers practical suggestions about activities of daily living, difficult moods and behaviors, difficult issues and decisions, and common medical concerns. The book includes a list of additional resources and an index. (AZBK09074)
11. S.A.F.E. Response Techniques in Crisis Situations: A Training Video with Supportive Printed Materials
Plantsville, CT: Alzheimer's Resource Center of Connecticut. 2001. (videocassette with training workbook).
Available from the Alzheimer's Resource Center, 1261 South Main Street, Plantsville, CT 06479. (860) 628-9000; FAX: (860) 621-8083. PRICE: $125.00 plus shipping and handling.
This educational program for caregivers of people with Alzheimer’s disease (AD) is designed to teach the S.A.F.E. Response Techniques for crisis situations. The S.A.F.E. techniques are safe and appropriate responses to aggressive behaviors such as hair pulling, biting, choking, squeezing, and grabbing. The program includes a videotape and workbook. The videotape reviews the basic principles of the S.A.F.E. response techniques and demonstrates their application during various crisis situations. The workbook presents this material in print format, with illustrations and step-by-step instructions for using the different techniques. It also suggests general strategies for reducing agitated and aggressive behaviors in people with Alzheimer’s disease. These include tips for communicating, approaching, creating an optimal environment, and assessing for discomfort and pain. The workbook also provides a form for reflecting on and evaluating a crisis situation and a pre-test/post-test for the program. (AZAV09648)
12. Steps to Understanding Challenging Behaviors: Responding to Persons with Alzheimer's Disease
Chicago, IL: Alzheimer's Association. 1998 (reprinted 2001). 11 p.
Available from the Alzheimer's Association. 225 North Michigan Avenue, Suite 1700, Chicago, IL 60601-7833. (800) 272-3900; (312) 335-8882 (TDD); FAX: (312) 335-1110. E-mail: info@alz.org. WEB: www.alz.org. PRICE: Single copy free; $9.00 for 50 print copies; free online access. Order Number ED311Z.
This brochure is intended to help caregivers respond to difficult behaviors exhibited by individuals with Alzheimer's disease (AD), focusing on repetitive actions, aggression, suspicious thoughts, recognition difficulties, and agitation. It is important to recognize that an AD patient is not being difficult on purpose , and to understand that behavior changes may be caused by physical discomfort, unfamiliar surroundings, complicated tasks, and frustrating interactions. Caregivers should identify and examine undesirable behaviors and explore potential solutions and responses . It may be necessary to try more than one approach before an effective solution is found. Possible solutions for repetitive actions include turning the action into an activity or offering an alternative activity, reassuring the person with a calm voice, and using memory aids. Potential responses to aggressive behaviors include staying calm and speaking slowly with a soft tone and using music, massage, or exercise to help soothe the person with AD. According to the booklet, if a AD patient has suspicious thoughts, the caregiver should not take offense or argue, but rather acknowledge the thoughts and switch the AD patient's attention to something else. Possible solutions for anxious or agitated behaviors include reassuring the AD patient, involving him or her in activities, and changing the environment. (AZBR07759)
13. Understanding Difficult Behaviors: Some Practical Suggestions for Coping with Alzheimer's Disease and Related Illnesses
Robinson, A., Spencer, B., White, L. Ann Arbor, MI: The Alzheimer's Education Program, Eastern Michigan University. 2001.
Available from the Alzheimer's Education Program. PO Box 981337, Ypsilanti, MI 48198-1337. (734) 487-2335; FAX (734) 487-0298; WEB: www.emich.edu/alzheimers/publications.html. PRICE: $16.00 for single copy, plus $2.67 shipping and handling. Available soon in Spanish.
This manual was designed to help family caregivers of Alzheimer's disease patients better understand the various causes of behaviors such as wandering, resistance to care, incontinence, and agitation to enable better management in caregiving. Problem-solving strategies also are discussed. The manual presents information about the importance of understanding the causes of difficult behaviors and how behaviors can be managed, the importance of good caregiver-patient communication skills, and information about specific behavioral problems. Behaviors discussed include angry or agitated behavior; hallucinations or paranoia; incontinence; problems with bathing, dressing, eating, sleeping, and wandering; repetitive actions; screaming or verbal noises; and unwillingness to remain in the care setting. Lists of selected readings and audiovisual materials are appended. (AZDC07885).
For more information, contact the ADEAR Center:
Phone: 1-800-438-4380
Web: www.nia.nih.gov/Alzheimers
E-mail: adear@nia.nih.gov
Updated October 2005
