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Caring for someone who has Alzheimer’s disease is perhaps one of the biggest commitments a person can face. It’s filled with emotional stress and hard work, but it can also be meaningful and rewarding. Sometimes, families can feel isolated and may not know where to turn for help.
The purpose of the Alzheimer’s & Dementia Alliance is to help families cope with all aspects of the disease through information, education, support, and advocacy.
Although there is no cure for Alzheimer’s, there are strategies, therapies, and treatments that can help manage the disease. The Alzheimer’s & Dementia Alliance can be a guide and a support to persons with Alzheimer’s disease and their families as they learn about options and begin to plan for the future. Please feel free to contact us at any time.
Dr. Solomon Carter Fuller was the first black psychiatrist in the United States and played a key role in the development of psychiatry in the 1900s. Dr. Carter Fuller also worked closely with Dr. Alois Alzheimer, the namesake of Alzheimer’s disease.
ADEAR (Alzheimer’s Disease Education and Referral Center)
ADEAR maintains information on Alzheimer’s disease research, diagnosis, treatment, drugs, and clinical trials, and Federal Government programs and resources.
Alzheimer Disease International (ADI)
This web site links to fifty-seven Alzheimer’s disease associations throughout the world, most in developing countries. It lists information about Alzheimer’s disease (AD) for the person with AD and the caregiver (in English and in 25+ languages). It also contains information on the global impact of Alzheimer’s as well as other activities of ADI.
Alzheimer Research Forum
A compendium of information for researchers, physicians and the general public, the site includes news, articles, discussion forums, interviews, diagnostic and treatment guide, directory of drugs and clinical trials, and research advances. It also provides access to such unique tools as directories of genetic mutations, antibodies, patents, and conferences.
Mayo Clinic Alzheimer’s Center
The Mayo Clinic Alzheimer’s Center provides comprehensive information on understanding Alzheimer’s disease and coping with Alzheimer’s symptoms as well as Alzheimer’s care.
A new website from Terra Nova Films dedicated to “streaming” visual educational material to family caregivers. The video material is able to turn words into pictures and scenes that can illustrate appropriate caregiving techniques and, in a sense, assure the user that he or she is not alone in this often lonely, difficult and stressful situation. Spanish language website: www.videoasistencia.org
Alzheimer’s Disease – The Family Journey
Caron, Wayne A., Patee, James J., & Otteson, Orlo J. Plymouth, MN: Northridge Press. 2000.
Alzheimer’s Disease: The Family Journey emphasizes that Alzheimer’s disease is a family illness that affects all parts of family life. This book is designed to help families better manage the family system, strengthen relationships and maintain overall family well-being.
Alzheimer’s Early Stages: First Steps for Family, Friends & Caregivers (2nd Edition)
Kuhn, Daniel, MSW. Alameda, CA: Hunter House, Inc., Publishers. 2003
According to author Daniel Kuhn, the early stages of Alzheimer’s can be the most difficult time for relatives and friends because they often don’t know much about the disease, or how they can be of help. This highly practical book fills the information gap. It is divided into three sections; how Alzheimer’s begins – causes and early symptoms, how to help a loved one with the disease, and how families and caregivers can help themselves.
A Dignified Life
Bell, Virginia & Troxel, David. Baltimore, MD: Health Professions Press. 2002.
A Dignified Life goes beyond the typical tips offered by most books and takes advantage of readers’ instinctive desire to build friendships and taps into the intuitive aspect of caregiving that is part of our very nature. It provides a complete model for care built around creative and effective communication and meaningful activities and includes touching stories that demonstrate how the Best Friends method continues to improve the lives of both those who have Alzheimer’s disease and those who care for them.
Shenk, David. New York: Anchor Books. 2002.
First attracted to his subject by its horrific ability to destroy the human mind and body, journalist David Shenk ultimately finds reasons to accept Alzheimer’s disease – and almost forgive it – in The Forgetting. Shenk describes his work as a biography, the life story of a biological outlaw that sends victims “on a slow but certain trajectory toward forgetting and death.” But his illuminating portrait of this growing epidemic offers more than a basic chronology.
Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing With the Disease
Koenig Coste, Joanne. New York, NY: Houghton-Mifflin Books, 2004.
Caregivers especially will find this guide to be an excellent resource, with helpful information on learning how to manage a loved one with Alzheimer’s and other dementias and valuable techniques for keeping communication going and helping to reduce frustrations. Topics include seeking a correct diagnosis, seeing the world from the patient’s perspective, enriching the patient’s life, receiving home care and more.
Moving a Relative with Memory Loss
Spencer, Beth & White, Laurie. Santa Rosa, CA: Whisp Publications. 2003.
This book was written to help families think about some of the issues involved in moving a relative with memory loss. It offers practical ideas for making the move an easier process. Topics include: why moving is hard, preparing to visit residential care, talking to your relative about the move, building relationships with staff, suggestions for visiting and much more.
Mayo Clinic on Alzheimer’s Disease
Petersen, M.D., Ronald C. New York, NY: Kensington Publishing Corp. Updated 2006.
This book covers how the brain functions & what can go wrong, conditions that cause dementia, medical conditions that may accompany Alzheimer’s, current theories about what causes Alzheimer’s, treatments, tips for daily caregiving in a Quick Guide reference for caregivers, assessing your financial situation to pay for care costs, and much more.
Talking to Alzheimer’s
Strauss, Claudia. Oakland, CA: New Harbinger Publications, Inc. 2001.
Few books manage to balance practical suggestions and loving sympathy as well as Talking to Alzheimer’s, a concise and comprehensive guide to communication with both paid caregivers and their patients. While the title suggests focus on a specific disease, the recommendations are appropriate for any family struggling with serious communication issues, whether those issues are the result of stroke, surgery, disease, or an accident.
Understanding Difficult Behaviors
Robinson, Anne, Spencer, Beth & White, Laurie. Ypsilanti, MI: Eastern MI University. 1989.
This book offers practical coping strategies for responding to challenging situations such as agitation, wandering, incontinence and resistance to care.
A Silver Alert is an emergency notification, requested by law enforcement, sent state-wide during an investigation for a missing person who is over age 60 and believed to have a permanent cognitive impairment.
A dementia-friendly community is a village, town, city or county that fosters an informed, respectful quality of life for individuals with dementia and for their families.