What is FTD

The

guide to

Treatment options and research

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Frontotemporal Dementia

Frontotemporal dementia vs. Alzheimer's

FTD diagnosis and progression

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Before we begin…

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The frontotemporal lobe is responsible for our thinking, emotions, personality, judgment, self-control, movement, and memory.

It is one of the most common forms of dementia in people under 60, affecting 50,000 to 60,000 people in the U.S.

Language difficulties

Personality changes

Behavioral changes

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Frontotemporal dementia (FTD) is a group of disorders characterized by progressive damage to the brain’s frontal and temporal lobes. This could lead to a variety of issues, including:

What is frontotemporal dementia?

Genes Associated with FTD

As FTD moves through the brain, toxic clumps of proteins build up, damaging brain cells.

The exact cause of FTD is unknown. Researchers have linked certain genes with the disease, as well as factors that affect the disease's symptoms, but more research are still needed.

Approximately 15-40 percent of FTD cases can be traced back to a genetic cause. When that gene is inherited, the case is known as "familial FTD".

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What causes FTD?

Learn more in our guide to Genetic Testing!

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In a 2012 study, scientists at UCSF found that genetic variants in the C9orf72 and MAPT genes were associated with 20 percent of FTD cases. Having the C9orf72 gene is also linked to more delusions and more severe cognitive impairment.

New genes invovled in FTD

How do genetics affect FTD?

When a patient has significant behavioral or emotional problems, a psychological evaluation is also recommended.

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FTD can be detected through neurological exams, MRIs, PET scans, and blood tests. However, it is often misdiagnosed, which explains why a diagnosis takes three to four years on average.

Diagnosing FTD

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"…It’s a rare disease. So when you are not gaining access to someone that’s a specialist, it can be difficult to figure out if that’s the right diagnosis or not…usually, a brain MRI scan might be plenty to make a diagnosis confidently of FTD early in the course of the illness, or you might need more specialized testing, like a PET scan, in order to figure it out."

Brad Dickerson Professor of Neurology, Harvard Medical School

Expert Perspective

Following the announcement of Bruce Willis's dementia diagnosis, Massachusetts General Hospital’s Dr. Brad Dickerson dug into FTD from a caregiver and medical perspective.

FTD diagnosis and care

FTD does not have clearly defined stages. Instead, it is a progressive condition where symptoms worsen over time. Below is an account of the early signs of Bruce Willis’s dementia, according to his daughter:

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"I’ve known that something was wrong for a long time... It started out with a kind of vague unresponsiveness, which [we] chalked up to Hollywood hearing loss..."

Is it dementia or normal aging?

Early signs of FTD

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"Aphasia is a problem with communication. It can be a problem with expressing yourself linguistically in language, a problem with understanding what other people say to you, or a mix of both… Sooner or later, and in almost everyone with that condition, other cognitive or behavioral symptoms will develop, and that turns into a more general type of dementia."

Brad Dickerson Professor of Neurology, Harvard Medical School

Expert Perspective

Being Patient interviewed Massachusetts General Hospital’s Dr. Brad Dickerson to dig into FTD from a caregiver and medical perspective, including what to expect in terms of symptoms.

What is aphasia?

Motor disorders

Speech and language difficulties

Personality and behavioral changes

Patients have difficulty in making or understanding speech, which may make them less responsive in conversations. This is known as Primary Progressive Aphasia (PPA).

Patients have tremors, muscle spasms or weakness, rigidity, poor coordination and balance, and difficulty swallowing.

Patients become more impulsive and show poor judgment. They lose interest in daily activities, and behave inappropriately. This is known as behavioral variant FTD (bvFTD).

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FTD signs and symptoms

Alzheimer's has relatively well-defined stages of development. FTD is a progressive disease where a similar set of symptoms get worse over time.

In Alzheimer’s disease, memory loss is often the first symptom. FTD is different: behavioral and language changes set it apart.

FTD is typically diagnosed in the 40s to early 60s. Alzheimer's, on the other hand, typically appears in individuals aged 65 and older.

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Progression

Symptoms

Unlike Alzheimer's, FTD patients often experience hallucinations early on, which can be a key indicator in distinguishing between the two conditions.

Age of onset

FTD vs. Alzheimer's

No cure or progression-slowing treatments are available for FTD. However, there are some measures to slow down the progression of FTD.

Supportive care

Symptoms management

Manage symptoms and support wellbeing through proper nutrition, sleep, and stress management.

Use of antidepressants, antipsychotics, and sleeping aids to temporarily suppress symptoms.

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Treatments for FTD

See our guide to Brain Health and Exercise!

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ExerciseRegular exercise — like jogging, yard work, or walking — and maintaining an active lifestyle have been linked to nearly 50-percent slower progression of FTD. Cognitive engagementIntellectual stimulation — reading, writing, learning something new — have all been associated with a slower progression of FTD symptoms. SocializingParticipating in social activities may contribute to better brain health and slow the progression of FTD.

Is it possible to slow down FTD progression?

The Association for Frontotemporal Degeneration (AFTD)

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Scientists are currently working to understand what causes FTD. They’re studying genetic and environmental factors, exploring disease biomarkers that could help diagnose FTD earlier, and testing drugs and treatments that could help address FTD symptoms and, one day, slow down or prevent the disease.Studies are also underway to better understand the impact of FTD on caregivers.

Current Research

A number of FTD clinical trials are underway. Learn more at:

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