Families face a variety of challenges when a loved one develops Alzheimer's disease or a related disorder. Caring for a memory-impaired person can be overwhelming. Families can prepare for these challenges and learn to cope with the demands of caregiving, in part, by educating themselves and reading accounts by others who have gone through the same experience. This resource list gives an overview of the many available books, articles, guides, videos, and audio cassettes about coping with Alzheimer's disease.
Caregivers may be able to borrow or rent some of these items from a local Alzheimer's Association chapter or a hospital, public, or school library. To purchase an item, please contact the organization listed in the "available from" section of the description. Availability information was correct at the time this list was printed. However, before you send payment for an item, we suggest that you confirm with the organization that the price and payment address are current. Many of these items may also be available from retail or online booksellers.
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Caregiver Coping
1. Alzheimer's Sourcebook for Caregivers: A Practical Guide for Getting Through the Day. 3rd ed.
Gray-Davidson, F. McGraw-Hill-NTC. 1999. 288 p.
Available from McGraw-Hill Companies. P.O. Box 548, Blacklick, OH 43004. (800)262-4729. PRICE: $16.95. ISBN: 0737301317.
This source book is intended to provide families with facts and suggestions to help make caregiving a meaningful and rewarding experience both for the person with Alzheimer's disease (AD) and for caregivers. It provides an overview of the issues faced by caregivers of people with AD; behavioral changes that may indicate a person has early-stage AD; and current knowledge about AD, its causes, and possible treatments. It explores unhealthy family reactions to AD, issues surrounding the distribution of caregiving among family members, and the family council approach to resolving such issues and developing a plan to meet the needs of the person with AD. It discusses the importance of becoming educated about AD caregiving, accepting the situation, and showing unconditional love for the person with AD. It also offers suggestions for communicating with the person with AD, managing activities of daily living, handling problem behaviors, planning enjoyable activities, caring for the caregiver, selecting a nursing home or home care residence, and facing the terminal stage of the disease. The book includes answers to 10 commonly asked questions about AD, information about resources, an outline for compiling a personal resources list, and a directory of State Agencies on Aging. (AZBK06432)
2.Managing Grief and Bereavement.
Ballard, E.L. Durham, NC: Duke Family Support Program, Duke University Medical Center. 1993. 24 p.
Available from the Duke Family Support Program, Box 3600, Duke University Medical Center, Durham, NC 27710. (919) 660-7510; FAX (919) 684-8569. PRICE: $5.00 for single copy; $3.00 per copy for orders of 25 or more.
This guide was written primarily for families and professionals caring for patients with Alzheimer's disease. The guide is divided into two sections. The first section addresses caregivers' anticipatory grief, which is grief experienced in advance of the patient's death. Families report that receiving information about the feelings and reactions in anticipatory grief and bereavement benefits caregivers and directly influences their ability to cope and care for the patient. The second section addresses grief reactions following the death of the patient. In this type of grief and bereavement, information about typical feelings and reactions is known to be crucial to the healthy resolution of suffering from the loss of a loved one. (AZBR02426)
3. When Someone You Love Has Alzheimer's Disease: The Caregiver's Journey.
Grollman, E.A. Kosik, K.S. Boston, MA: Beacon Press. 1997. 192 p.
Available from Beacon Press, Unitarian Universalist Association Bookstore. 25 Beacon Street, Boston, MA 02108. (617) 742-2110; FAX: (617) 723-3097; WEB: www.beacon.org. PRICE: $12.00. ISBN: 0807027219.
This book is designed for families and friends of Alzheimer's disease (AD) patients. The authors provide insights based on their own experiences. The book reviews the symptoms and diagnosis of AD and the range of emotions that families and loved ones may experience. The authors provide guidelines for caring for AD patients as well as caregiver support strategies; discuss spiritual and emotional issues among patients and caregivers; and respond to frequently asked questions about symptoms, disease progression, patient care, genetic factors, and safety. References included. (AZBK05963)
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Coping When a Spouse or Parent Has AD
4. Do I Know You?: Living Through the End of a Parent's Life.
Moskowitz, B.A. New York, NY: Kodansha International. 1998. 184 p.
Available from Oxford University Press. 2001 Evans Road, Cary, NC 27513. (800) 451-7556; FAX (919) 677-1303. PRICE: $20.00. ISBN: 1568362102.
This book is a first-person account of a parent's aging and cognitive decline by an adult daughter. The author tells the story of her mother, who moved to Florida after her husband's death and spent 10 happy years there before her health and memory began to fail. The book is not intended to be a practical guide to caregivers, but rather to offer support to other families trying to cope with the emotional strain of watching a parent age while handling their care. The author addresses such questions as when to become the parent to one's own parent, and how to protect the dignity and independence of older people while keeping them safe. She explores these issues as she describes the telltale signs of her mother's mental decline, the difficult decision to move her to a nursing home, and the pain and humor of her life there. (AZBK07124)
5. Gone Without a Trace.
Caldwell, M.D. Forest Knolls, CA: Elder Books. 1995. 106 p.
Available from Elder Books. PO Box 490, Forest Knolls, CA 94933. (800) 909-2673 or (415) 488-9002; FAX (415) 488-4720; PRICE: $10.95 plus $2.75 for shipping and handling. ISBN: 094387324X.
This book provides insight into the emotional turmoil families may experience in the rare circumstance that a loved one with Alzheimer's disease or another dementia mysteriously vanishes. It presents the personal account of a daughter's anguish, grief, and confusion in the years since her mother's disappearance. The author describes her struggle to resume a normal life amid terrible anxieties and the unceasing search for answers. Guidance is provided on how to comfort families who may have a child or adult member missing under mysterious circumstances and a step-by-step approach on organizing a missing adult search. Among the topics covered are the following: how to prepare a written profile of the lost person, how to contact relevant agencies, samples of inquiries which should be circulated, the importance of getting publicity at an early stage, dealing with small police departments, and information on the Alzheimer's Safe Return Program. Appendixes provide examples of documents one can use in the search effort. (AZBK05352)
6. In Sickness and in Health: Caring for a Loved One With Alzheimer's.
Grubbs, W.M. Forest Knolls, CA: Elder Books. 1997. 153 p.
Available from Elder Books. PO Box 490, Forest Knolls, CA 94933. (800) 909-2673 or (415) 488-9002; FAX (415) 488-4720; PRICE: $14.95 plus $2.75 shipping and handling. ISBN: 0943873126.
This book presents the author's personal experiences caring for his wife who had Alzheimer's disease (AD). He briefly describes how he met his wife, what their lives were like before the onset of AD, the early signs that something was wrong, and the effect of getting a diagnosis of a dementing illness. The author discusses the effect of AD on his wife and on himself; and describes how he cared for his wife while struggling to maintain his own mental, physical, and emotional well-being. He discusses his changing role as caregiver, the importance of reaching out for support, the use of a volunteer day-care center, the decision to move his wife to a nursing home, the nursing home experience, legal and insurance issues, and the difficulty of facing his wife's death. The book includes a discussion of the need for special care units and other models of care that may better meet the needs of people with AD and their families. (AZBK06584)
7. Surviving Today and Revising Tomorrow: Caregiving Strategies for the Alzheimer's Spouse.
Tully, M. Blotzer, M.A. Bethesda, MD: Alzheimer's Association of Greater Washington. 1993. 32 p.
Available from the Alzheimer's Association of Greater Washington. 11240 Waples Mill Road, Suite 402, Fairfax, VA 22030. (866) 259-0042;PRICE: $3.00 plus tax and $2.75 shipping.
This brochure focuses on short range caregiving strategies for spouses of people with Alzheimer's disease (AD). It discusses routines of daily life that help reduce stress, manage the patient, and cope with powerful emotions. It then explores how caring for someone with AD fundamentally alters one's dreams for the future and offers methods for salvaging some elements of those dreams. The final section discusses the new challenges and adjustments that occur and coping strategies for use when an AD patient must be placed in a nursing home or other assisted living facility. The authors recommend maintaining structure in one's life, planning short periodic trips away from home, staying involved in the patient's care, periodically reviewing financial status, and staying open to new challenges and changes in one's life. (AZBR04750)
8. When We Become the Parent to Our Parents.
Allen, M.E. Plymouth, NH: MEA Productions. 1998. 62 p.
MEA Productions. 55 Binks Hill Road, Plymouth, NH 03264. (603) 536-2641; FAX: (603) 536-4851; E-MAIL: me.allen@juno.com. PRICE: $9.95 plus $2.00 postage and handling. ISBN: 0965167518.
This book presents the experiences of a woman caring for her mother and her aunt, both of whom had Alzheimer's disease (AD). The author discusses her views on and experiences with coping with AD when it strikes family members. She stresses how blessed one can become by the experience rather than beaten by it. Chapters discuss beginning acceptance of AD as another phase of life and managing to enjoy moments with her mother despite the dementia; coping when her mother did not recognize her; keeping her sense of humor; and preparing her children to face the disease and enjoy their visits. The opportunity to preserve family legacy when loved ones begin living in the past is explained, as are tips on recording these histories. Final chapters concern her decision to use a nursing home and her feelings about it, suggestions for choosing a nursing home, assuming responsibility for parent's finances, and coping after realizing that one is the sole caregiver for a parent or in-law. Appendices provide lists of books on coping with AD and resource organizations offering information. (AZBK07358)
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Humor and Positive Attitude
9. Acres of Diamonds: The Importance of Laughter When Nothing Seems Funny.
Grossman, B. Fairfax, VA: Alzheimer's Association of Greater Washington. 1993. (audiocassette).
Available from the Alzheimer's Association of Greater Washington. 11240 Waples Mill Road, Suite 402, Fairfax, VA 22030. (866) 259-0042;PRICE: $10.00 plus $2.75 postage and handling.
This audiocassette discusses the role of humor in coping with Alzheimer's disease. The tape is aimed at helping caregivers recognize the importance of humor in keeping a sense of perspective when providing care for an individual with dementia. The speaker mixes jokes and lighthearted conversation with practical information about coping with daily caregiver stresses such as isolation, exhaustion, guilt, and anger. He emphasizes that regaining and maintaining a sense of humor is an effective way to counteract the negative impact of caregiver stress on personal health, outlook, and relationships. (AZAV04372)
10. A Funny Thing Happened on the Way to the Nursing Home: A Different Handbook for Carers of Dementia Patients.
Connor, J. Ourimbah, Australia: BookBound Publishing. 1998. 75 p.
Available from Basing House Books, Judd Avenue, Hammondville NSW 2170, Australia. 61 2 9825-5083; FAX 61 2 9825-5078. PRICE: $21.95 plus $5.00 air mail or $4.00 surface mail to the United States. ISBN: 1876231181.
This book is intended to help families cope with caring for a relative with dementia. The author describes how he cared for his wife at home after she developed both Alzheimer's disease (AD) and Parkinson's disease (PD). He uses a series of short stories to relate some of the challenges he faced, such as hallucinations, incontinence, and loss of intimacy, and how he dealt with those challenges. He emphasizes the importance of trying to see humor in what might otherwise be embarrassing or difficult situations, and in getting support from a caregivers' group. The book includes some general information about dementia, PD, AD, and resources for caregivers in Australia. (AZBK06928)
11. Magic of Humor in Caregiving.
Sherman, J.R. Golden Valley, MN: Pathway Books. 1995. 97 p.
Available from Pathway Books. PO Box 27790, Golden Valley, MN 55427. (800) 958-3375 (access #32). PRICE: $5.00 plus $2.00 shipping and handling for one copy. ISBN: 0935538194.
This book explains the healing benefits of laughter in reducing stress and tension. Without being disrespectful of the conditions that bring caregivers and care receivers together, it shows how playfulness can be used to increase personal effectiveness, promote wellness, and lighten the impact of one of life's misfortunes. It also helps caregivers see caregiving in new and refreshing ways and suggests that laughter is often the best medicine for a caregiver. Throughout the book, reflection questions are posed to the reader and space is provided for notations. The book concludes with a list of available resources that can provide help as needed. (AZBK05328)
12. Pop.
Meyerowitz, J. New York, New York: First Run Features. 1998. videocassette. 78 minutes.
Available from First Run Features. 153 Waverly Place, New York, NY 10014. (800) 229-8575; FAX: (212) 989-7649; WEB: www.firstrunfeatures.com. PRICE: $29.95 plus $4.50 shipping and handling.
This poignant and humorous documentary film by photographer Joel Meyerowitz follows the film maker, his 87-year old father, Hy, and his grown son on a 2-week car trip back to New York City, where Hy was born. Now affected by Alzheimer's disease, Hy's memories are fading, and he is intermittently anxious about being separated from his wife of many years. But as the three stop along the route from Florida to New York, encountering new people and interesting sights, Hy's confusion often gives way to his street-wise humor, unconditional friendliness, and continuing optimism about life. (AZAV07852)
13. Positive Caregiver Attitudes.
Sherman, J.R. Golden Valley, MN: Pathway Books. 1994. 85 p.
Available from the Pathway Books. PO Box 27790, Golden Valley, MN 55427. (800) 958-3375 (access #32). PRICE: $5.00 plus $2.00 shipping and handling for one copy. ISBN: 0935538186.
This book, written for caregivers of people with Alzheimer's disease and related dementias, presents practical strategies for developing and maintaining positive attitudes toward patients, caregiving, and life in general. It identifies the source of negative feelings and illustrates the destructive effect negative attitudes can produce if left unresolved, concluding with a plan of action for attaining more positive attitudes and establishing a greater self-image. (AZBK05141)
14. Safe Return Home: An Inspirational Book for Caregivers of Alzheimer's.
Batuik, T.; Ayers, C. Kansas City, MO. Andrews McMeel Publishing. 1998. 112 p.
Available from Andrews McMeel Publishing, 4520 Main Street, Kansas City, MO 64111-7701. (800) 223-2336; FAX (800) 943-9831. WEB: www.andrewsmcmeel.com. PRICE: $12.95. ISBN: 0836269136.
The authors explore the impact of Alzheimer's disease (AD) on patients and their families via the cartoon "Crankshaft" as well as through personal reminiscences. The characters of Lucy and Helen received enormous attention when they are introduced to "Crankshaft" readers, who then watched them suffer from progressively worsening AD. This book is a special collection of "Crankshaft" cartoons that feature the story of these two women and their families' experiences with AD. (AZBK07344)
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Spirituality and Coping
15. Alzheimer's: Making Sense of Suffering.
Strecker, T.R. Lafayette, LA: Vital Issues Press. 1997. 197 p.
Available from Huntington House Publishers/Vital Issues Press. PO Box 53788, Lafayette, LA 70505. (800) 749-4009; FAX (318) 237-7060; PRICE: $11.99. ISBN: 1563841339.
This book is the personal account of a family's experience with Alzheimer's disease (AD). Written first from the perspective of a wife (the author's mother), and then from that of an adult daughter (the author), the book traces their journey from the father's earliest signs of AD to his death. It is intended to document the feelings of anger, guilt, confusion, loneliness, and grief shared by family members, and to explore the spiritual issues that arise in caring for someone with AD. The book includes poems, short stories, and scriptural passages along with factual information about AD, its diagnosis, and its effects on the caregiver. It addresses such issues as dealing with difficult behaviors, the role of support groups, the role of family and friends, the decision to place the family member in a care facility, caregiving in the nursing home, grieving the loss, and issues in terminal care. Appendices contain additional scriptural readings, suggestions for caregivers and loved ones, and bibliography on AD and spirituality, and a list of organizations for people with AD and their families. (AZBK07316)
16. God Never Forgets: Faith, Hope, and Alzheimer's Disease.
McKim, D.ed. Louisville, KY: Westminster John Knox Press. 1998. 117 p.
Available from Presbyterian Publishing Company/Westminster John Knox Press. 100 Witherspoon Street, Louisville, KY 40202-1396. (800) 227-2872; FAX (502) 569-5113. PRICE: $14.95 plus $2.50 shipping and handling. ISBN: 0664257046.
This book on the theological issues raised by Alzheimer's disease (AD) is intended to help people with AD, their families, friends, and clergy find God's presence in the midst of difficult times. It presents six papers from the conference entitled, Memory and Hope: Alzheimer's Disease in Biblical and Theological Perspectives, hosted by the Memphis Theological Seminary on October 10-12, 1994. These papers explore AD in relation to Christian understandings of the human person, God, and what the church believes about God's grace, salvation, and life eternal. They remind the reader that God does not forget those affected by AD, even when their emotional pain makes it difficult to sustain their religious faith. The papers include information about stages of the disease and emphasize basic principles involved in working with a person who has AD: a person with AD is still a person and if memory loss is suspected, be sure the person is seen by a physician. Practical advice is given for interacting with a person with AD. The important role of serving as an advocate for someone with AD is explained. The significance of individual and community memory is discussed. One paper, on caregiving, examines the changes that occur in family dynamics when a loved one has AD and highlights Paul Tillich's three theological principles (love, wisdom, and justice) that can assist clergy and lay caregivers in dealing with families' caregiving issues. Ethical decision making is discussed, using the perspectives of several theologians. Another paper describes the tendency to act as though people with AD are invisible, once a diagnosis has been made; people talk over and around them when they are present. Communities of faith are urged to relieve the social isolation commonly experienced by people with AD. The concluding paper discusses the importance of retaining a hopeful spiritual perspective. Notes and indexes. (AZBK06937)
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