Alzheimer's Association. The Alzheimer's Association is a national, nonprofit organization with a network of local chapters that provide education and support for people diagnosed with AD, their families, and caregivers. Chapters offer referrals to local resources and services, and sponsor support groups and educational programs. Online and print publications are also available.
Alzheimer's Association225 North Michigan Ave.Suite 1700Chicago, IL 60601 Website: www.alz.org
Alzheimer's Disease Cooperative Study. The Alzheimer's Disease Cooperative Study (ADCS) is a cooperative agreement between the National Institute on Aging (NIA) and the University of California, San Diego, to advance research in the development of drugs to treat AD. The ADCS is a consortium of medical research centers and clinics working to develop clinical trials of medicines to treat behavioral symptoms of AD, improve cognition, slow the rate of decline of AD, delay the onset of AD, or prevent the disease altogether. The ADCS also develops new and more reliable ways to evaluate patients enrolled in clinical trials.
Alzheimer's Disease Cooperative StudyUniversity of California, San Diego9500 Gilman Drive - 0949La Jolla, CA 92093-0949858-622-5880Website: http://adcs.ucsd.edu
Alzheimer's Disease Education and Referral (ADEAR) Center. The ADEAR Center, part of the NIA, provides publications and information on AD, including booklets on caregiving, fact sheets and reports on research findings, a database of clinical trials, recommended reading lists, and the Progress Report on Alzheimer's Disease. Information specialists provide referrals to local AD resources.
Alzheimer's Disease Education and Referral (ADEAR) Center PO Box 8250Silver Spring, MD 209071-800-438-4380Website: www.alzheimers.nia.nih.gov
Children of Aging Parents. Children of Aging Parents is a nonprofit organization that provides information and referrals for nursing homes, retirement communities, elderlaw attorneys, adult day-care centers, medical insurance providers, respite care, assisted living centers, and State and county agencies. Also offered are fact sheets on various topics, a bimonthly newsletter, conferences and workshops, support group referrals, and a speaker's bureau.
Children of Aging Parents1609 Woodbourne Road, Suite 302ALevittown, PA 19057-15111-800-227-7294Website: www.caps4caregivers.org
Eldercare Locator. The Eldercare Locator is a nationwide, directory assistance service helping older people and their caregivers locate local support and resources. It is funded by the U.S. Administration on Aging, whose website at www.aoa.gov also features AD information for families, caregivers, and health professionals.
Eldercare Locator1-800-677-1116Web site: www.eldercare.gov
Family Caregiving Alliance. The Family Caregiver Alliance (FCA) is a nonprofit organization that offers support services for those caring for adults with AD, stroke, traumatic brain injuries, and other cognitive disorders. FCA programs and services include an Information Clearinghouse for FCA's publications.
Family Caregiving Alliance690 Market Street, Suite 600San Francisco, CA 94104415-434-3388Website: www.caregiver.org
The National Hospice and Palliative Care Organization (NHPCO). NHCPO is a nonprofit, membership organization working to enhance the quality of life for individuals who are terminally ill and advocating for people in the final stage of life. Contact NHPCO for information, resources, and referrals to local hospice services. Publications, fact sheets, and website resources are available on topics including how to find and evaluate hospice services.
National Hospice and Palliative Care Organization1700 Diagonal Road, Suite 625 Alexandria , VA 223141-800-658-8898 (toll-free Helpline)Website: www.nhpco.org
National Institute on Aging (NIA). Part of the National Institutes of Health (NIH), the NIA is the Federal government's lead agency for research on AD. NIA also offers information about health and aging, including the Age Page series and the NIA Exercise Kit, which contains an 80-page exercise guide and 48-minute closed-captioned video. Caregivers can find many Age Pages on the website.
National Institute on Aging Information CenterPO Box 8057Gaithersburg, MD 20898-80571-800-222-22251-800-222-4225 (TTY)Website: www.nia.nih.gov
National Library of Medicine. Part of NIH, the National Library of Medicine is the world's largest medical library with 6 million items, including books, journals, technical reports, manuscripts, microfilms, photographs and images. A large searchable health information database of biomedical journals, called MEDLINE/PubMed is accessible via the Internet. A service called MEDLINEplus links the public to general information about AD and caregiving, plus many other sources of consumer health information, including a searchable clinical trials database located at http://clinicaltrials.gov.
National Library of Medicine8600 Rockville PikeBethesda, MD 208941-888-346-3656Website: www.nlm.nih.gov
Well Spouse Foundation. Well Spouse Foundation is a nonprofit organization that gives support to spouses and partners of the chronically ill and/or disabled. Well Spouse maintains support groups, publishes a bimonthly newsletter, and helps organize letter writing programs to help members deal with the effects of isolation.
Well Spouse Foundation63 West Main Street, Suite HFreehold, NJ 077281-800-838-0879Website: www.wellspouse.org
Check with your local library, bookseller or with major internet book distributors for the following:
Ballard, E.L., Poer, C.M. Lessons Learned: Shared Experiences in Coping. Durham, NC: The Duke Family Support Program. 1999. Available from the Alzheimer's Disease Education and Referral (ADEAR) Center, PO Box 8250, Silver Spring, MD 20907-8250. 1-800-438-4380.
This book documents the experiences of people caring for loved ones with AD. Filled with short stories and advice, it is intended for caregivers who wish to take comfort and learn from the experiences of others. Caregivers discuss the caregiving process, such as getting a diagnosis, finding support services, making decisions about treatment and living arrangements, and coping with stress and caregiver burden.
This book is designed for people in the early stages of AD. It provides information about the nature and causes of AD, the symptoms and how to deal with them. It answers questions about the assessment process, taking part in a drug research program, continuing to work, handling finances, driving, and the effects of AD on a spouse and other family members.
Mace, N.L., Rabins, P.V. The 36 Hour Day: A Family Guide To Caring for Persons With Alzheimer's Disease, Related Dementing Illnesses, and Memory Loss in Later Life. 3rd ed. Baltimore, MD: Johns Hopkins University Press. 1999.
This practical and detailed reference book provides a wealth of information to families on caring for persons with AD or related disorders. The book presents background information on dementia, brain disorders, and the causes of dementia, and gives practical suggestions and advice on how families and caretakers can deal with problems.
This book examines scientific research and case histories to summarize the most effective ways to reduce the impact of physical changes to the brain as we age. The authors offer techniques to improve memory and recommend mental and physical exercise programs. Their strategies to stay healthy also include a well-balanced diet, proper sleep, and getting treatment for depression, vision and hearing loss, and other health problems. The book also discusses brain disorders.
Petersen, R., ed. Mayo Clinic on Alzheimer's Disease. Rochester, MN: Mayo Clinic Health Information. 2002.
This book discusses current knowledge of AD and its relationship to other forms of dementia. It also provides an overview of treatment and caregiving, using the experience of physicians, psychiatrists, neurologists, and allied healthcare professionals at the Mayo Clinic. Topics include how the brain works and what can go wrong; how AD affects a person; diagnosis; treatments; research; and caregiving.
Restak, R. The Secret Life of the Brain. Washington, DC: Joseph Henry Press. 2001.
This companion to the PBS documentary takes the reader on a fascinating journey through the developing brain, from infancy and childhood, through adulthood, to old age. The author examines brain disorders and mechanisms of brain repair and healing.
Shenk, D. The Forgetting. Alzheimer's: Portrait of an Epidemic. New York, NY: Random House, Inc. 2001.
An eloquent and moving description of Alzheimer's disease, The Forgetting is an exploration of, and meditation on, the nature of memory and perceptions of self. It is a readable, accessible description of the history of AD, research, and the human impact of the disease. The author, calling AD a "death by a thousand subtractions," describes the science of AD in terms that are easy for those who know nothing about AD to understand.
This book describes the participants and findings from the Nun Study, a long-term project examining aging and AD in a unique population of 678 Catholic sisters. The nuns allowed Dr. Snowdon access to their medical and personal records, and agreed to donate their brains upon death. The book discusses the relationship of early linguistic ability to risk of AD, the association of stroke and depression to AD, and the role of heredity and lifestyle in healthy aging.
Tanzi, R.E., Parson, A.B. Decoding Darkness: The Search for the Genetic Causes of Alzheimer's Disease. Cambridge, MA: Perseus Publishing. 2000.
This book presents a history of the medical journey to find the genetic causes of AD. It describes the experiences of Dr. Rudy Tanzi, a pioneer in the search to identify AD genes. The book is easy to read and examines the complex research involved in molecular genetics. The authors speculate that AD may ultimately be effectively treated and even prevented.
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