Frontotemporal Disorders: Information for Patients, Families, and Caregivers

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)
www.nia.nih.gov/alzheimers

The National Institute on Aging (NIA), part of the National Institutes of Health, leads the Federal Government effort conducting and supporting research on Alzheimer’s disease and other forms of dementia. NIA's Alzheimer's Disease Education and Referral (ADEAR) Center offers information and publications on dementia and caregiving for families, caregivers, and professionals. Free publications include: Getting Your Affairs in Order, Nursing Homes: Making the Right Choice, End of Life: Helping with Comfort and Care, Frontotemporal Disorders: A Resource List, and many others.

National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20894
1-800-352-9424 (toll-free)
1-301-468-5981 (TTY)
www.ninds.nih.gov

MedlinePlus
National Library of Medicine
www.medlineplus.gov

Organizations

Association for Frontotemporal Degeneration
Radnor Station Building 2, Suite 320
290 King of Prussia Road
Radnor, PA 19087
1-267-514-7221
1-866-507-7222 (toll-free)
www.theaftd.org

ALS Association
27001 Agoura Road, Suite 250
Calabasas Hills, CA 91301-5104
1-800-782-4747 (toll-free)
www.alsa.org

CurePSP
30 East Padonia Road, Suite 201
Timonium, MD 21093
1-800-457-4777
www.curepsp.org

National Aphasia Association
350 Seventh Avenue, Suite 902
New York, NY 10001
1-800-922-4622 (toll-free)
www.aphasia.org

WE MOVE
5731 Mosholu Avenue
Bronx, NY 10471
1-212-875-8312
www.wemove.org

Caregiver Services

Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov

Family Caregiver Alliance
180 Montgomery Street, Suite 900
San Francisco, CA 94104
1-800-445-8106 (toll-free)
www.caregiver.org

National Academy of Elder Law Attorneys, Inc.
1577 Spring Hill Road, Suite 220
Vienna, VA 22182
1-703-942-5711
www.naela.org

Caregiver Support

FTD Support Forum
www.ftdsupportforum.com

PPA Support Group
www.groups.yahoo.com/group/PPA-support

Well Spouse Association
63 West Main Street, Suite H
Freehold, NJ 07728
1-800-838-0879
www.wellspouse.org

Diagnosis, Treatment, and Research Centers

Columbia-Presbyterian Medical Center
Lucy G. Moses Center for Memory and Behavioral Disorders
New York, NY
1-212-305-6939
http://pathology.columbia.edu/previous/taub/centers.html

Indiana University School of Medicine
Indiana Alzheimer’s Disease Center
Indianapolis, IN
1-317-278-5500
http://iadc.iupui.edu

Johns Hopkins University School of Medicine
Frontotemporal Dementia and Young-Onset Dementias Clinic
Baltimore, MD
1-410-502-2981
www.hopkinsmedicine.org/Psychiatry/specialty_areas/
neuropsychiatry/frontotemporal_dementia

Massachusetts General Hospital
Frontotemporal Disorders Unit
Boston, MA
1-617-726-5571
www.ftd-boston.org

Mayo Clinic
Department of Neurology
www.mayoclinic.org/frontotemporal-dementia

Rochester, MN
1-507-538-3270
www.mayoclinic.org/frontotemporal-dementia/rsttreatment.html

Jacksonville, FL
1-904-953-0853
www.mayoclinic.org/frontotemporal-dementia/jaxtreatment.html

Scottsdale, AZ
1-800-446-2279
www.mayoclinic.org/frontotemporal-dementia/scttreatment.html

Northwestern University Feinberg School of Medicine
Cognitive Neurology and Alzheimer’s Disease Center
Chicago, IL
1-312-908-9339
www.brain.northwestern.edu

University of California, Los Angeles
Frontotemporal Dementia & Neurobehavior Clinic
Los Angeles, CA
1-310-794-2550
www.adc.ucla.edu/Frontotemporal_Dementia_Clinic.asp

University of California, San Francisco
Memory and Aging Center
San Francisco, CA
1-415-476-6880
www.memory.ucsf.edu/ftd

University of Pennsylvania Health System
Center for Frontotemporal Dementia
Philadelphia, PA
1-215-662-3606
www.uphs.upenn.edu/ftd

Acknowledgments

The National Institute on Aging at NIH thanks the following people for their contributions to the vision and creation of this booklet:

Darby Morhardt, MSW, LCSW
Research Associate Professor
Director of Education, Cognitive Neurology and Alzheimer’s Disease Center
Northwestern University Feinberg School of Medicine

Sandra Weintraub, PhD
Professor of Psychiatry, Neurology, and Psychology
Clinical Core Leader, Cognitive Neurology and Alzheimer’s Disease Center
Northwestern University Feinberg School of Medicine

Jennifer Merrilees, RN, MS
Clinical Nurse Specialist
Department of Neurology
Memory and Aging Center
University of California, San Francisco

Catherine Pace-Savitsky, MA
Former Executive Director
Association for Frontotemporal Degeneration

Susan Dickinson, MS, CGC
Executive Director
Association for Frontotemporal Degeneration

For additional copies of this publication or further information:
www.nia.nih.gov/alzheimers
1-800-438-4380
National Institute on Aging
Alzheimer’s Disease Education and Referral Center