How are Frontotemporal Disorders Diagnosed?

Frontotemporal disorders can be hard to diagnose because their symptoms — changes in personality and behavior and difficulties with speech and movement — are similar to those of other conditions. For example, behavioral variant frontotemporal dementia (bvFTD) is sometimes misdiagnosed as a mood disorder, such as depression, or as a stroke, especially when there are speech or movement problems. To make matters more confusing, a person can have both a frontotemporal disorder and another type of dementia, such as Alzheimer’s disease. Also, since these disorders are rare, physicians may be unfamiliar with the relevant symptoms and signs.

Getting the wrong diagnosis can be frustrating. Without knowing their true condition, people with frontotemporal disorders may not get appropriate treatment. Families may not get the help they need. People lose valuable time needed to plan treatment and future care.

Researchers are studying ways to diagnose frontotemporal disorders earlier and more accurately and to distinguish them from other types of dementia. One area of research involves biomarkers, such as proteins or other substances in the blood or cerebrospinal fluid, which can be used to measure the progress of disease or the effects of treatment. Also being studied are ways to improve brain imaging, including seeing the tau protein, and neuropsychological testing.

For more information, see Diagnosing Dementia.

Here is a list of medical centers where people with frontotemporal disorders can be diagnosed and treated:

Columbia-Presbyterian Medical Center
Department of Neurology
New York, NY
(212) 305-6939

Houston Methodist Hospital
Frontotemporal Degeneration Unit
Houston, TX
(713) 441-7650

Indiana University School of Medicine
Indiana Alzheimer’s Disease Center
Indianapolis, IN
(317) 963-5500

Johns Hopkins University School of Medicine
Frontotemporal Dementia and Young-Onset Dementias Clinic
Baltimore, MD
(410) 955-5147

Massachusetts General Hospital
Frontotemporal Disorders Unit
Boston, MA
(617) 726-5571

Mayo Clinic
Department of Neurology

Rochester, MN

(507) 538-3270

Jacksonville, FL
(904) 953-0853

Scottsdale, AZ
(800) 446-2279

Northwestern University Feinberg School of Medicine
Mesulam Center for Cognitive Neurology and Alzheimer’s Disease
Chicago, IL
(312) 908-9339

University of Alabama, Birmingham
Neurology Department, Division of Memory Disorders
Birmingham, AL
(205) 996-3679

University of California, Los Angeles
Neurobehavior Clinic
Los Angeles, CA
(310) 794-1195

University of California, San Diego
Shiley-Marcos Alzheimer’s Disease Research Center
La Jolla, CA
(858) 822-4800

University of California, San Francisco
Memory and Aging Center
San Francisco, CA
(415) 353-2057

University of Pennsylvania Health System
Penn Frontotemporal Degeneration Center
Philadelphia, PA
(215) 349-5863

Washington University
Department of Neurology
St. Louis, MO
(314) 362-7241