Frontotemporal dementia (FTD) is a rare neurodegenerative disease that causes nerve cells in the brain to lose their ability to function over time.
FTD can result in changes to a person’s behavior and personality, as well as impair their verbal and physical abilities.1
For those watching FTD symptoms progress in a family member, it can feel like the person they knew is slipping away.
FTD can cause a person to act out of character.
People living with FTD often display indifference or behave inappropriately in social situations.2 Because of this, FTD is often misdiagnosed as a mental illness, considered a midlife crisis, or a different form of dementia.3,4
Signs and symptoms.
FTD is the most common form of dementia for people under 60 years old.1,2,5 People can experience
a variety of symptoms as FTD progresses, including1,2,4-6:
In healthy individuals, nerve cells send and receive signals in an organized way that allows them to move, speak, and think.
With FTD, nerve cells that control these functions are lost in the parts of the brain behind the forehead and ears—known as the frontal and temporal lobes.7
When nerve cells die in these brain regions, people ultimately lose the personality center of their brain.7-9
Early on, people with FTD can be more affected in personality and language than motor functioning.10
As FTD progresses, it can put people at risk for other conditions and complications—including pneumonia, infection, or injury from a fall—which could become fatal due to their weakened health.6,11,12
Unfortunately, FTD is also associated with a shorter lifespan. Average life expectancy is 7 to 13 years after the start of symptoms.13
Evaluating the emotional impact.
FTD doesn’t only affect the person diagnosed—it impacts the entire family. There are considerable challenges that come with
taking care of someone with FTD.
- Caregivers often feel distressed and overwhelmed by the behavior and symptoms of the person they’re looking after.14
- Emotional turmoil can have a significant impact on a caregiver’s mental health.14
- Caregivers often sacrifice their own health and well-being for the person they’re looking after. Caregiver support is also a priority.14,15
Families face significant financial hurdles when an individual is diagnosed with FTD.
- Caregivers are often forced to sacrifice income or quit their jobs due to caring for an individual with FTD
or their own health issues.16
Early departure from the workforce is common for people suffering from FTD.16
- Medical fees and care services can also be extremely costly.
For now, doctors can only help patients with managing some of the symptoms associated with FTD.6 There is no disease-modifying treatment that has been approved by the U.S. Food and Drug Administration (FDA) or another Health Authority to help stop or slow disease progression.6
There is hope. Many clinical trials—designed to understand whether an investigational treatment is safe and effective—are studying the multiple genetic forms of FTD. That’s why genetic testing may be required to see whether you or the person you’re looking after is eligible for a clinical trial for FTD.
Participation in clinical trials could be an option for people living with FTD–and could potentially lead to increased knowledge of the disease and meaningful future treatments.