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What is frontotemporal dementia?

Susan Barber Lindquist, Mayo Clinic News Network on

Published in Health & Fitness

Genetic testing also is helpful. For example, the same mutated gene may cause a brother to have frontotemporal dementia and a sister to have ALS, Dr. Boeve says.

"Roughly 20% to 40% of individuals with FTD have a genetic cause or contributor, and that is more common than in Alzheimer's disease, Lewy body disease and other neurologic disorders," says Dr. Boeve, The Little Family Foundation Professor of Lewy Body Dementia.

Primary progressive aphasia typically can be diagnosed with language-based testing and brain imaging studies. Corticobasal syndrome and progressive supranuclear palsy can be diagnosed with a neurologic examination and brain imaging studies.

For ALS, other tests such as an electromyogram, or EMG, in addition to a patient's symptoms and scans, may help determine a diagnosis.

On average, it takes more than three years to get an accurate diagnosis, according to the Association for Frontotemporal Degeneration (AFTD). "We often call this the diagnostic odyssey of FTD," says Dr. Boeve, a member of the AFTD Medical Advisory Council.

What treatments are available?

 

No treatments are available to stop or slow FTD, but clinical trials are ongoing. Today, treatment focuses on managing symptoms.

For behavioral variant frontotemporal dementia, for example, antidepressant and antipsychotic medications may help reduce behavior problems, but all drugs have side effects, so they must be considered with caution. Medications used for Alzheimer's disease may not be effective, which is another reason an accurate diagnosis is important, Dr. Boeve notes.

"The mainstay of therapy is nonmedication approaches — how to assist the patient and family to manage the disinhibition or the repetitive behavior, especially when in social settings or in public," Dr. Boeve says. "It's quite challenging for families, but those strategies can be helpful."

Nonmedication strategies include:

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