Frontotemporal Dementia

Frontotemporal dementia is a neurodegenerative disorder that affects the frontal and temporal lobes of your brain. It happens when there’s damage to nerve cells (neurons) in these parts. As it affects more cells, your frontal and temporal lobes shrink.

Symptoms target your behavior, movement, personality and/or language. It’s a progressive disorder. This means that symptoms get worse over time.

A healthcare provider can help you manage symptoms for as long as possible.

Types of frontotemporal dementia

The types of FTD include:

• Behavioral variant (bvFTD): Damage to your frontal lobes affects your behavior and personality. Unawareness of inappropriate behavior and memory problems may or may not be present.
• Primary progressive aphasia: Damage to your temporal lobes affects your communication and language skills.
• Corticobasal degeneration: Damage to your frontal and temporal lobes causes problems with movement, like difficulty using one side of your body and changes in thinking.
• Progressive supranuclear palsy: Damage within your frontal lobe affects eye movements, balance and walking.
• Frontotemporal dementia with parkinsonism: Damage in your frontal and temporal lobes affects your movement, language, behavior, balance and muscle control.
• FTD-ALS: A combination of FTD and ALS symptoms affect your behavior and language skills with progressive muscle weakness and muscle jerks.

Symptoms of frontotemporal dementia

The symptoms of FTD vary by type and the part of your brain it affects. They may include:

• Apathy: No motivation, social isolation, a lack of self-care or hygiene
• Food interest changes: Overeating or eating things that aren’t food (pica)
• Inappropriate social behaviors: No filter when speaking, lack of respect for others or participating in risky behaviors
• Loss of empathy (emotional blunting): Difficulty reading the emotions of others or acting in an unfeeling way
• Loss of executive function: Difficulty planning, solving problems and staying organized
• Loss of language and communication skills: Not having the right words to say, mixing up words, losing the ability to read and write
• Repeated behaviors: Saying or doing the same things over and over
• Movement changes: Muscle stiffness, weak muscles, slowed movements, jerking muscle movements

Symptoms may start mild and will get worse over time.

Frontotemporal dementia causes

This condition happens when nerve cells (neurons) in your brain die. Proteins group together within the cell and damage it. As your neurons lose function, parts of your frontal and temporal lobes shrink. This leads to symptoms of FTD.

Studies show that there may be a genetic variant that causes some cases of the disease. This is a change to the instruction manual that your DNA uses to do a specific job in your body.

In other cases, the exact reason why FTD happens isn’t fully understood. Research is ongoing to learn more.

Risk factors for FTD

You may be more at risk of developing FTD if:

• It runs in your biological family history
• You had a traumatic brain injury

Complications

As FTD gets worse, you may have the following complications:

• Agitation or aggression
• Delusions or hallucinations
• Difficulty swallowing
• Loss of all communication or language skills
• Loss of muscle control
• Memory loss
• Mental health challenges like depression
• Trouble recognizing loved ones

Severe symptoms may require full-time care to keep you safe and help you meet your needs.

How doctors diagnose frontotemporal dementia

A healthcare provider will diagnose frontotemporal dementia based on your medical history and a physical and neurological examination.

It can be challenging to diagnose FTD. That’s because symptoms may look like other conditions. Tests help rule these out. Your provider may offer the following:

• Blood tests
• Imaging tests of your brain (MRI, CT scan or PET scan)
• Genetic testing
• Cognitive testing

Each type of FTD has its own staging system. Your provider will review your symptoms and identify how severe they are when they make a diagnosis. Most staging includes mild, moderate and severe, among other classifications. Stages will change as the condition gets worse.

How is frontotemporal dementia treated?

There isn’t a cure for FTD. There are treatment options available for managing symptoms. These vary by the type of frontotemporal dementia and the symptoms you have. Your provider may recommend:

• Taking selective serotonin reuptake inhibitors (SSRIs) to help with certain behavior challenges
• Exercising at physical or occupational therapy for movement changes
• Using assistive devices like a walker or wheelchair to help you navigate safely
• Practicing different forms of communication during speech therapy
• Taking antidepressants or antipsychotic medications to manage mood changes or mental health complications
• Participating in clinical trials

What can I expect if I have frontotemporal dementia?

FTD changes how your brain works. This means that some of the things that you used to be able to do will become harder as the disease affects more of your brain. Over time, you may need full-time care. This is to help you complete your daily routine since living independently can be unsafe.

If you have an early diagnosis of FTD, you may want to talk to your loved ones or to anyone you trust to make important decisions for you. These conversations help your caregivers honor your wishes if you can’t make choices on your own in the future.

While these conversations may feel difficult, having them sooner can help avoid confusion in the years to come. They also mean your loved ones won’t face the painful, difficult situation of having to guess what you want.

Also, you should put your wishes and decisions in writing. That includes preparing documents connected to legal issues and what happens if you can’t make decisions for yourself.

Your healthcare provider can tell you more about what to expect. They can also direct you to resources and services that might help you.

What is the life expectancy of FTD?

The average life expectancy after a diagnosis of FTD is seven to 13 years after symptoms start. This varies from person to person and by type. Your provider is the best person to talk to about your situation because it may or may not match statistics.

While this condition isn’t fatal on its own, it often causes other issues that are serious or even life-threatening. One common issue is trouble swallowing. This causes problems with eating, drinking and speaking. It increases the risk of developing pneumonia or respiratory failure.