U.S. NATIONAL INSTITUTES OF HEALTH
N I A Logo
LEADING THE FEDERAL EFFORT ON AGING RESEARCH

Alzheimer's Disease: A Caregiver and Patient Resource List


Especially for the Caregiver

1. Alzheimer's: Answers to Hard Questions for Families.

Nelson, J.L. Nelson, H.L. New York, NY: Doubleday Dell Publishing Group. 1997. 224 p.

Available from Random House, Doubleday Dell Publishing Group. 1540 Broadway, New York, NY 10036. (212) 782-9791. PRICE: $12.95. www.randomhouse.com/catalog. ISBN: 0385485336.

This book is designed to give practical advice regarding ethical and moral issues faced by families and caregivers of people with Alzheimer's disease. By describing hypothetical situations, the authors illustrate common problems encountered by caregivers at different stages of the illness, and they suggest ways to make choices that are right for both the patient and family members. They encourage family meetings in which someone records the responsibilities each family member accepts and the long-term plans agreed on as a family. If the family member is in the early stages of the illness, the authors recommend including him or her in at least some of the family meetings and some of the advance planning. The stories highlight the importance of communication among family members and planning for the future, whether it includes the decision to put the patient in a nursing home or decisions about the continuation of medical treatment late in the illness. The authors suggest using community resources, from services for the patient to support groups for the caregiver. An extensive appendix provides telephone numbers, addresses, and World Wide Web sites of Alzheimer's disease associations and support groups. (AZBK05942)

2. Alzheimer's Home Companion. [Newsletter].

Reno, NV: Eymann Publications, Inc. 1998-. Monthly. [4 p. average].

Available from Eymann Publications, Inc. PO Box 3577, Reno, NV 89505. (800) 354-3371; FAX (702) 358-1476; E-mail: order@care4elders.com. PRICE: $24.95 for a 1-year subscription.

This newsletter, published monthly, is designed to offer practical advice and information to caregivers of people with Alzheimer's disease (AD). A typical issue might include information about dealing with distraction; why the person does embarrassing things; the benefits of exercise for people with dementia; the use of validation therapy as a behavior modification tool; warning signs of AD; and communication problems in AD. The newsletter comes with a set of 10 activity idea cards for people with AD. (AZJA06719)

3. Alzheimer's Early Stages: First Steps in Caring and Treatment.

Kuhn, Daniel. Alameda, CA: Hunter House Publishers, Inc. 1999.

Available from Hunter House Publishers, Inc., PO Box 2914, Alameda, CA 94501. (800) 266-5592; Fax: (510) 865-4295; E-mail: ordering@hunterhouse.com. PRICE: $14.95 for paperback (ISBN: 0-89793-262-5) and $24.95 for hardcover. ISBN: 0-89793-263-3.

This book provides support and guidance to families and friends of loved ones in the early stages of Alzheimer's disease (AD). The first section addresses medical aspects of AD, including diagnosis, symptoms, risk factors, prevention, and treatment. Through the words of AD patients, the next section explores the perceptions and needs of people recently diagnosed with AD. Guidance on how to care for someone in the early stages of AD follows, focusing on decision-making, improving communication, financial planning, alternative living arrangements, safety, and meeting the care recipient's physical and emotional needs. The final section addresses caregiver needs. Described methods of nurturing oneself include exploring spiritual resources, maintaining a sense of humor, keeping a journal, and individual and family counseling. The author stresses the importance of utilizing community resources, such as adult day care, support groups, and respite care to minimize the risk of caregiver stress and burnout. (AZBK07804)

4. Lessons Learned: Shared Experiences in Coping.

Ballard, E.L.; Poer, C.M. Durham, NC: The Duke University Family Support Program. 1999.

Available from the ADEAR Center. PO Box 8250, Silver Spring, MD 20907-8250. (800) 438-4380; FAX (301) 495-3334; www.alzheimers.nia.nih.gov. PRICE: $7.00.

This book documents the experiences of people caring for loved ones with Alzheimer's disease. Filled with short stories and advice written by members of the Durham Evening Support Group, part of the Duke University Family Support Program, it is intended for caregivers who wish to take comfort and learn from the experiences of others.

Caregivers discuss milestones in the caregiving process, such as getting a diagnosis, finding support services, and making decisions about treatment, care, and living arrangements. The negative aspects of caregiving are discussed, such as stress and caregiver burden, but caregivers also talk about the rewards of caregiving and explain why they care for their loved ones. The roles of humor, love, pleasure, anger, and loneliness in caregiving are also discussed. (AZBK07854)

Back to Top

Especially for the Patient

5. Just for You.

Toronto, Ontario: Alzheimer Society of Canada. 1994. 9 p.

Available from the Alzheimer Society of Canada. 20 Eglinton Ave. W, Suite 1200, Toronto, Ontario M4R 1K8, CANADA. (416) 488-8772; FAX (416) 488-3778. PRICE: $1.50.

This booklet is designed to provide people with Alzheimer's disease (AD) with information about AD and ways of coping with the disease. It explains what tests are used to aid in the diagnosis of AD and explores some experiences that people with AD have and some suggestions to help them make their lives a little easier. Responses to common statements from AD patients are included about the changes they experience as the disease progresses, such as feelings of losing their minds, excessive worrying, mood swings, anger, loneliness, frustration, and embarrassment. Final comments list ways of living successfully at home alone. (Also available in French). (AZDC05309)

6. Perspectives: A Newsletter for Individuals Diagnosed With Alzheimer's Disease. [Newsletter].

La Jolla, CA: University of California San Diego Alzheimer's Disease Research Center. 1995-. [8 p. average].

Available from Lisa Snyder, LCSW, editor. Alzheimer's Disease Research Center, 9500 Gilman Drive-0948, La Jolla, CA 92093. (858) 622-5800; FAX: (858) 622-1012; E-mail: Lsnyder@ucsd.edu. PRICE: $20.00 for 4 issues per year.

This quarterly newsletter is written for and in part by people diagnosed with Alzheimer's disease (AD). Each issue contains current information about AD, medications, support groups, tips on coping with AD, personal reflections, and other relevant topics. Issues also include research updates, a question-and-answer section, and a forum for discussion between people with AD worldwide. (AZJA05976)

7. Speaking Our Minds: Personal Reflections From Individuals With Alzheimer's.

Snyder, L. New York, NY: W.H. Freeman and Company. 1999. 161 p.

Available from Henry Holt and Company. 115 West 18th Street, New York, NY 10011. (212) 886-9200; FAX: (212) 633-0748; WEB: www.henryholt.com. PRICE: $12.95. ISBN: 0716740109.

This book presents the personal reflections of people with Alzheimer's disease (AD). Seven people of various ages and backgrounds express their thoughts and feelings about what it is like to live with AD, and cope with its effects on their lives. Although all seven have the same disease, each has a unique experience to share. Their stories cover personal history, diagnosis, family and social interactions, philosophical and religious perspectives, and various neurological and psychological dimensions of AD. Transcribed from taped, in-home interviews, each narrative is interspersed with the author's thoughts and observations about the seven people afflicted with the disease, their lives, and common themes of the disease that bind them together. An appendix contains a list of selected resources. (AZBK07740)




Page last updated Nov 19, 2008

Phone