Lewy Body Dementia: Information for Patients, Families, and Professionals


Federal Government

National Institute on Aging
Alzheimer’s Disease Education and Referral (ADEAR) Center

P.O Box 8250
Silver Spring, MD 20907-8250
1-800-438-4380 (toll-free)

National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20894
1-800-352-9424 (toll-free)

National Library of Medicine

General Information

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
1-800-708-7644 (toll-free)

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

Eldercare Locater
This service of the U.S. Administration on Aging connects the public to community services for older adults and their families.
1-800-677-1116 (toll-free)

Family Caregiver Alliance
The Alliance provides information and referral, education, and other services to caregivers of people with chronic, disabling health conditions.
1-800-445-8106 (toll-free)

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
1-800-272-3900 (toll-free)

Alzheimer’s Foundation of America (AFA) Teens
1-866-232-8484 (toll-free)

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