What is frontotemporal dementia?

Frontotemporal dementia isn’t one condition. It’s several disorders that affect the frontal and temporal lobes of the brain. Personality, emotions, behavior, and speech are controlled in these areas of the brain. These disorders cause the brain to lose brain cell function.

Frontotemporal dementia is sometimes called frontal lobe dementia. It used to be known as Pick’s disease, after Arnold Pick the physician who discovered it.

The symptoms of frontotemporal dementia depend on the areas of the brain affected. Most symptoms can be divided into one of two categories: behavior or language.

Common behavioral symptoms of frontotemporal dementia include:

  • inappropriate actions
  • apathy, or lack of interest or enthusiasm in activities
  • lack of inhibition or restraint
  • neglect of personal hygiene and care
  • compulsive behavior

Common language-related symptoms of frontotemporal dementia include:

  • difficulty speaking or understanding speech
  • language recall problems
  • loss of reading and writing skills
  • difficulty with social interactions

Doctors and researchers divide frontotemporal dementia into three categories. These include:

  • behavioral variant frontotemporal dementia: affects personality and behavior
  • primary progressive aphasia: affects speech at first and then behavior
  • progressive nonfluent aphasia: causes people to lose their ability to recall and speak words

The type of frontotemporal dementia is determined by the most prominent symptoms. It’s possible to have more than one type of dementia. This is known as mixed dementia.

Researchers have not identified a single cause for this type of dementia, but they have some ideas. Some people’s brains develop abnormal protein structures, called Pick bodies.

Researchers have also identified abnormal proteins that may play a role. These proteins, found in brain cells of individuals who died with dementia, may affect how the brain works. Researchers don’t know why these proteins develop or how to prevent them.

Frontotemporal dementia has one known risk factor: genetics. Scientists have found several genes related to the disease. If one of your family members is diagnosed with frontotemporal dementia, you have a greater risk.

However, not everyone with a family history will develop a problem. It’s also estimated that more than half of the individuals diagnosed with frontotemporal dementia don’t have a family history associated with the disease.

Doctors can’t diagnose frontotemporal dementia with a single test. Instead, your doctors will try to rule out other conditions or diseases that cause similar symptoms.

Some of the tests used to diagnose frontotemporal dementia include:

  • blood tests: These can help identify other possible causes.
  • neuropsychological testing: These tests check your judgment and memory skills, and help determine what type of dementia you may have.
  • brain imaging: Doctors will check for tumors or blood clots.
  • MRI: A magnetic resonance imaging (MRI) test gives doctors a detailed image of your brain.
  • CT scan: A computerized tomography (CT) scan creates images of your brain in layers.

Frontotemporal dementia cannot be cured. Treatment is aimed at managing and alleviating symptoms.

Common treatments include:

Medications

Some antidepressants can help reduce the behavioral problems caused by changes to the brain. Antipsychotic medications are also used to treat behavioral problems. These treatments are considered off-label drug use.

Off-label drug use means that a drug that’s been approved by the FDA for one purpose is used for a different purpose that has not been approved. However, a doctor can still use the drug for that purpose. This is because the FDA regulates the testing and approval of drugs, but not how doctors use drugs to treat their patients. So, your doctor can prescribe a drug however they think is best for your care.

Read more about off-label drug treatments.

Speech therapy

Speech therapy can help you learn to cope with speech difficulties. A speech therapist can also help you find alternative ways to communicate.

Medication can be effective for treating dementia, but lifestyle treatments can help, too. Helping people find a comfortable environment can help them cope with the symptoms of dementia.

Environment is important. Maintaining an environment that doesn’t upset someone is vital. Make sure your home is well-lit and has minimal noise. People with behavior problems need to be in environments that are familiar. They may also need to avoid large crowds.

People with speech problems may need to be in environments where communication is easier. They may wish to keep tools for communicating, like a pen and paper, with them all the time.

In the early stages, the symptoms and signs of frontotemporal dementia can be cared for and treated with good results. Late-stage frontotemporal dementia can take years to develop. As the disease progresses, 24-hour care may become necessary.

Frontotemporal dementia shortens a person’s life span. The condition will eventually cause a person to have difficulty with bodily functions such as:

  • swallowing
  • chewing
  • moving around
  • controlling the bladder and bowels

These changes can cause serious infections in the lungs, urinary tract, and skin.

According to the Alzheimer’s Association, most people with a frontotemporal dementia disorder live an average of six to eight years after the first symptoms appear. In some cases, people live as few as two years.

If a loved one is experiencing difficulty with speech or noticeable changes in behavior, make an appointment to speak with their doctor. Try to attend the appointment with them. Make a list of incidents that you have noticed. It can help a doctor determine what steps to take for diagnosing the symptoms.

If you’ve been diagnosed with a frontotemporal dementia disorder or are caring for someone who has, find support groups in your area. The health education office of your local hospital should be able to help you find support groups. Learning to cope with the effects of frontotemporal dementia can be difficult, but help is available.