INFORMATION AND SUPPORT RESOURCES
Alzheimer’s Disease Education and Referral (ADEAR) Center
P.O. Box 8250
Silver Spring, MD 20907-8250
This service of the National Institute on Aging (NIA) offers information and publications on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to Alzheimer’s disease. Staff members answer telephone, email, and written requests and make referrals to local and national resources. The ADEAR website offers free, online publications in English and Spanish; email alerts and online Connections newsletter registration; an AD clinical trials database; and more.
225 North Michigan Avenue, Floor 17
Chicago, IL 60601-7633
The Alzheimer’s Association is a national, non-profit 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 spon-sor support groups and educational programs. Online and print publications are also available. The Association also funds AD research.
Alzheimer’s Foundation of America
322 Eighth Avenue, 7th Floor
New York, NY 10001
The Alzheimer’s Foundation of America provides care and services to individuals confronting dementia and to their caregivers and families, through member organizations dedicated to improving quality of life. Services include a toll-free hotline, consumer publications and other educational materials, and conferences and workshops.
Dana Alliance for Brain Initiatives
505 Fifth Avenue, 6th floor
New York, NY 10017
The Dana Alliance for Brain Initiatives, a non-profit organization of more than 265 leading neuroscientists, helps advance public awareness about the progress and promise of brain research and disseminates information about the brain.
CAREGIVER SUPPORT AND SERVICES
Caregiver Action Network
2000 M Street NW, Suite 400
Washington, DC 20036
The Caregiver Action Network helps educate and support people who care for loved ones with chronic illness, disability, or the frailties of old age. The organization offers an online library of information and educational materials, workshops, and other resources.
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.
Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
The Family Caregiver Alliance is a nonprofit organization that offers support services and information for people caring for adults with AD, stroke, traumatic brain injuries, and other cognitive disorders.
National Hospice and Palliative Care Organization
1731 King Street, Suite 100
Alexandria, VA 22314
This nonprofit organization works to enhance the quality of life for people who are terminally ill. It provides information, resources, and referrals to local hospice services, and offers publications and online resources.
Well Spouse Association
63 West Main Street, Suite H
Freehold, NJ 07728
The nonprofit Well Spouse Association gives support to spouses and partners of people who are chronically ill and/or disabled. It offers support groups and a newsletter.
RESEARCH AND CLINICAL TRIALS
Alzheimer’s Disease Cooperative Study
University of California, San Diego
9500 Gilman Drive M/C 0949
La Jolla, CA 92093-0949
The Alzheimer’s Disease Cooperative Study (ADCS) is a cooperative agreement between 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 caused by 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 Research Forum
The Alzheimer Research Forum, an online community and resource center, offers professionals and the general public access to an annotated index of scientific papers, research news, moderated discussions on scientific topics, libraries of animal models and antibodies, and directories of clinical trials, conferences, jobs, and research-funding sources.
ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. Users can search for clinical trials and find information about each trial’s purpose, who may participate, locations, and phone numbers for more details.
The ADEAR Center offers fact sheets; easy-to-read materials; booklets about topics such as being diagnosed with early-stage AD, caregiving, home safety, and comfort and care at the end of life; and more. See the ADEAR Center listing under “Information and Support Resources” above for contact information.
Consumers and professionals interested in AD also may wish to refer to the following materials:
Ballard, E.L., & Poer, C.M. Lessons Learned: Shared Experiences in Coping. Durham, NC: The Duke Family Support Program, 1999.
Available for $8 from the Duke Family Support Program, 3600 DUMC, Durham, NC 27710; 1-800-672-4213; www.dukefamilysupport.org .
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.
Dash, P., & Villemarette-Pittman, N. Alzheimer’s Disease. New York: American Academy of Neurology, 2005.
This concise volume provides an overview of recent findings regarding the causes, diagnosis, and treatment of AD. It is designed to help caregivers and family members gain a better understanding of AD and the available options for coping with and managing this illness. Sixteen chapters answer questions about topics such as the definition of AD and dementia, AD versus other causes of dementia, treatments for behavioral symptoms and other complications of AD, and practical issues for the patient and family. Illustrations, a glossary, and a list of resources are also included.
Doraiswamy, P.M., & Gwyther, L., with Adler, T. The Alzheimer’s Action Plan. New York: St. Martin’s Press, 2008.
This book, by a physician and social worker at Duke University, offers information about how to get an early and accurate AD diagnosis and why it matters, life after the diagnosis, state-of-the-art treatments, coping with behavioral and emotional changes through the early and middle stages of AD, accessing the latest clinical trials, and understanding the future of AD.
Kuhn, D., & Bennett, D.A. Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers, 3rd ed. Alameda, CA: Hunter House Publishers, 2013.
With increased awareness of the symptoms of AD and improved diagnostic techniques, more people are learning that they or a family member have a memory disorder. This book, written by experts at Rush University Alzheimer’s Disease Center in Chicago, helps readers understand and find ways to cope with the early stages of the disease. It also includes an extensive resource list of websites, organizations, and references to consumer and professional literature.
Mace, N.L., & Rabins, P.V. The 36-Hour Day: A Family Guide to Caring for People With Alzheimer’s Disease, Related Dementias, and Memory Loss in Later Life, 5th ed. Baltimore: Johns Hopkins University Press, 2011.
This book offers guidance and comfort for families caring for loved ones with AD, other dementias, and memory loss in later life. The fourth edition includes chapters on topics such as getting medical help for the person with dementia, behavioral symptoms of dementia, nursing homes and other living arrangements, and research in dementia. New information discusses diagnostic evaluation, caregiver resources, legal and financial information, nursing homes and other communal living arrangements, and the latest updates on research, medications, and the biological causes and effects of dementia. Available in a large-print version.
Messer, M. Pressure Points: Alzheimer’s and Anger. Durham, NC: Duke Family Support Program, 2000. Available for $10 from the Duke Family Support Program, 3600 DUMC, Durham, NC 27710; 1-800-0672-4213; www.dukefamilysupport.org .
In simple, easy-to-read language, this book addresses issues such as setting boundaries, managing anger positively, and risk factors for anger in AD care. It offers tangible action steps for responding appropriately, rather than abusively, when feeling angry. Participants in Alzheimer’s support groups share helpful techniques and coping mechanisms, as well as enlightening anecdotes about caring for a loved one with AD. Caregivers, family members of AD patients, clergy, and health professionals all may benefit from this publication. Two companion booklets are also available from the ADEAR Center: “Hit Pause”: Helping Dementia Families Deal with Anger (for health professionals; $3.00) and Wait a Minute! When Anger Gets Too Much (for families and caregivers; $2.00).
Perry, G., ed., Alzheimer’s Disease: A Century of Scientific and Clinical Research. Journal of Alzheimer’s Disease, book edition, Fairfax, VA: IOS Press, Inc., 2006.
This volume brings together the important discoveries in the AD field since the disease’s original description by Dr. Alois Alzheimer a century ago. It traces how the importance of AD as the major cause of late-life dementia came to light and narrates the evolution of the concepts related to AD throughout the years. Fifty papers are organized into sections on historical perspective, neuropathology, synaptic changes, amyloid, tau, disease mechanisms, genetics, and diagnosis and treatment.
Petersen, R., ed. Mayo Clinic Guide to Alzheimer’s Disease: The Essential Resource for Treatment, Coping and Caregiving. Rochester, MN: Mayo Clinic Health Solutions, 2009.
This guide is designed to help nonprofessionals understand dementia and its effects on the mind, the differences between dementia and changes associated with normal aging, and how to improve memory and maintain good mental function. It includes information about changes that occur in normal aging; the process of diagnosing dementia; non-AD forms of dementia; how AD develops, and AD stages, diagnosis, and treatment. New information about mild cognitive impairment, ways to stay mentally sharp, and research trends, along with an action guide for caregivers, are also included.
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 and 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: Random House, Inc., 2003.
An eloquent and moving description of AD, 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. Calling AD a “death by a thousand subtractions,” the author describes the science of AD in clear and easy-to-understand terms.
Snowdon, D. Aging With Grace: What the Nun Study Teaches Us About Leading Longer, Healthier, and More Meaningful Lives. New York: Random House, Inc., 2002.
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 gave 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 with AD, and the role of heredity and lifestyle in healthy aging.
Tanzi, R.E., & Sisodia, S.S. Alzheimer’s Disease: Advances in Genetics, Molecular and Cellular Biology. New York: Springer Publishing Company, 2007.
This book examines every major aspect of AD—clinical, epidemiologic, structural, chemical, genetic, molecular, and therapeutic. This edition includes expanded coverage of related dementing disorders, including prion diseases, Pick’s disease, frontotemporal disorders, an in-depth discussion of transgenic models, and the biochemistry of presenilins. It also discusses treatment of symptoms with therapeutic drugs and AD clinical trials. The broad coverage of AD in this book will be of special interest to clinicians, educators, investigators, and health administrators.
Uetz, D., & Lindsay, A. Into the Mist: When Someone You Love Has Alzheimer’s.
Philadelphia: Xlibris Corporation, 2005.
This book combines information from researchers, experts, and families in a comprehensive guide for AD caregivers. It offers personal accounts of three families caring for a loved one from the earliest stages to the last stages, illustrating the commonalities and differences among AD patients and the ways their families handle the most difficult challenges. It also provides information to help families cope with the psychological aspects of AD, behavior problems, and communication difficulties. The book covers such topics as the stages of AD, Medicare, Medicaid, long-term care insurance, geriatric care management, the diagnosis of AD, causes and prevention, and drug treatments.