When we began our search to learn about dementia, for an explanation for the changes we were experiencing with our mother, to determine what resources were out there, and who could provide assistance, we felt lost. Over the last couple of years, we have found quite a bit of information. We are hoping these links to articles, books, agencies and support groups help you as much as it did us. If you find another link that you find helpful, please send us and email and we will add it to our list. We would like to thank Novartis Pharmaceuticals, makers of the Exelon Patch, for their beautiful listing of resources, which was our starting point for this growing listing.
Administration on Aging
Washington, DC 20201
225 North Michigan Avenue, 17th Floor
Chicago, IL 60601
Alzheimer’s Disease Education and Referral Center (ADEAR)
PO Box 8250
Silver Spring, MD 20907
Alzheimer’s Foundation of America (AFA)
322 8th Avenue, 7th Floor
New York, NY 10001
http://www.alzquilt.org (a quilt to remember – this is a beautiful program)
National Adult Day Services Association (NADSA)
2519 Connecticut Avenue, NW
Washington, DC 20008
National Adult Day Services Association: Innovation, Service, and Support
National Association of Area Agencies on Aging (N4A)
1730 Rhode Island Avenue, NW, Suite 1200
Washington, DC 20036
National Association of Professional Geriatric Care Managers (GCM)
1604 North Country Club Road
Tucson, AZ 85716
National Family Caregivers Association (NFCA)
10400 Connecticut Avenue, #500
Kensington, MD 20895
National Hospice and Palliative Care Organization (NHPCO)
1700 Diagonal Road, Suite 625
Alexandria, VA 22314
Social Security Administration
Other Resources Which May Be Of Interest to You
Family Caregiver Alliance
This national organization is dedicated to providing information, support, and advocacy to caregivers.
MayoClinic.com — Alzheimer’s Center
This section of the website provides information and resources for people with Alzheimer’s disease and caregivers.
Alzheimer’s Research Forum
This site provides a listing of professional neurology journals, with links to journal sites. Index provides information on availability, abstracts, full text, and subscription fees.
Reading Material for Alzheimer's Disease Patients
Aerobics of the Mind: Keeping the Mind Active in Aging: A New Perspective on Programming for Older Adults. Marge Engelman, PhD. Attainment Company, Inc., 1996. Learn about exercises to keep the mind active.
Alzheimer’s: The Answers You Need. Helen D. Davies and Michael P. Jensen. Elder Books, 1997. This book provides concise and very direct answers to more than 100 commonly asked questions about the disease.
Be Prepared: The Complete Financial, Legal, and Practical Guide for Living with Cancer, HIV, and Other Life-Challenging Conditions. David S. Landay. St. Martin’s Press, Inc., 2000. This comprehensive book provides clear explanations about financial and legal matters and offers many resources for people living with chronic illnesses.
Keep Your Brain Alive. Lawrence Katz, PhD, and Manning Rubin. Workman Publishing Company, Inc., 1999. Find out about the aging process of the brain and read about mental exercises to keep the mind active.
Show Me the Way to Go Home. Larry Rose. Elder Books, 1996. A man with early-onset Alzheimer’s shares his day-to-day experiences of coping with the disease.
Speaking Our Minds: Personal Reflections from Individuals with Alzheimer’s. Lisa Snyder, LCSW. W. H. Freeman Publishers, 1999. Seven people with Alzheimer’s disease discuss their feelings, thoughts, and experiences. The author’s own insights are included as well.
Total Recall: How to Maximize Your Memory Power. Joan Minninger, PhD. MJF Books, 1997. This book offers easy-to-follow tips to make the most of one’s memory abilities.
Losing My Mind: An Intimate Look at Life with Alzheimer’s. Thomas DeBaggio. Free Press, 2002
The Forgetting: Alzheimer’s: Portrait of an Epidemic. David Shenk. Alfred A. Knopf, 2003
Alzheimer’s Activities: Hundreds of Activities for Men and Women with Alzheimer’s Disease and Related Disorders. B. J. Fitzray. Rayve Productions Inc, 2001
Reading Material for Caregivers
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH. Warner Books, 2001. This book provides comprehensive information on caring for a person with Alzheimer’s disease.
Talking to Alzheimer’s: Simple Ways to Connect When You Visit with a Family Member or Friend. Claudia J. Strauss. New Harbinger Publications, 2002
There’s Still a Person in There: The Complete Guide to Treating and Coping with Alzheimer’s. Michael Castleman, Dolores Gallagher-Thompson, PhD, and Matthew Naythons, MD, GP. Perigee Books, 2000. This book takes a practical and supportive approach to caring for someone with Alzheimer’s disease.
Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers. Daniel Kuhn and David A. Bennett, MD. Hunter House (CA), 2003
The Validation Breakthrough: Simple Techniques for Communicating with People with ‘Alzheimer’s-Type Dementia’. Naomi Feil, Vicki De Klerk-Rubin. Health Professions Press, 2002
Gentlecare: Changing the Experience of Alzheimer’s Disease in a Positive Way. Moyra Jones. Hartley & Marks Publishers, 1999
When Someone You Love Has Alzheimer’s: The Caregiver’s Journey. Earl A. Grollman, Kenneth S. Kosik. Diane Pub Co, 1996
The House on Beartown Road: A Memoir of Learning and Forgetting. Elizabeth Cohen. Thorndike Press, Large Print Edition, 2003