Lewy Body Dementia: Information for Patients, Families, and Professionals
National Institute on Aging
Alzheimer’s Disease Education and Referral (ADEAR) Center
P.O Box 8250
Silver Spring, MD 20907-8250
National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20894
Lewy Body Dementia Association
912 Killian Hill Road, S.W.
Lilburn, GA 30047
1-800-539-9767 (toll-free LBD Caregiver Link)
1-404-935-6444 (national office)
Michael J. Fox Foundation for Parkinson’s Research
Grand Central Station
P.O. Box 4777
New York, NY 10163-4777
National Parkinson Foundation
1501 N.W. 9th Avenue/Bob Hope Road
Miami, FL 33136-1494
1-800-473-4636 (toll-free helpline)
Parkinson’s Disease Foundation
1359 Broadway, Suite 1509
New York, NY 10018
1-800-457-6676 (toll-free helpline)
Support Services and Resources
This service of the U.S. Administration on Aging connects the public to community services for older adults and their families.
Family Caregiver Alliance
The Alliance provides information and referral, education, and other services to caregivers of people with chronic, disabling health conditions.
For Children and Teens
Although the following Alzheimer’s organizations are not specific to Lewy body dementia, their dementia-related resources and networks may be helpful for children and teens.
ADEAR Center Resources for Children and Teens
Alzheimer’s Association Kids & Teens
Alzheimer’s Foundation of America (AFA) Teens
Diagnosis, Treatment, and Research
The Lewy Body Dementia Association (LBDA) maintains a list of its scientific and medical advisors. Many of these physicians see patients at their clinics or may make referrals to other specialists in your area. See www.lbda.org/content/lbda-scientific-advisory-council-sac. For general tips on finding a doctor, visit www.lbda.org/content/finding-doctor-diagnose-and-treat-lbd.
The Alzheimer’s Disease Education and Referral Center maintains a list of research centers funded by the National Institute on Aging at NIH where you may find medical specialists in Lewy body dementia: www.nia.nih.gov/alzheimers/alzheimers-disease-research-centers. Professionals may also find dementia resources.
The American Academy of Neurology has a “find a neurologist” page on its website: http://patients.aan.com/findaneurologist
The American Association for Geriatric Psychiatry has a physician finder on its website: www.gmhfonline.org/gmhf/find.asp
Publication Date: October 2013
Page Last Updated: April 1, 2015