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The Impact of Frontotemporal Dementia on You and Your Loved Ones

The family of Bruce Willis recently revealed that the actor has been diagnosed with frontotemporal dementia, or FTD. While you’ve likely heard of dementia and associate the health condition with aging adults, FTD is much less common than Alzheimer’s disease and often affects people who are younger.

“The majority of FTD happens earlier in life, about 65 years old or younger,” says Christine Cliatt Brown, MD, a board-certified specialist in behavioral neurology and assistant professor in the Division of Cognitive Neurology at University of Utah Health. “About 15 to 22 out of 100,000 people develop FTD.”

Like Alzheimer’s disease, FTD is a type of dementia, or a neurogenerative disease of the brain. It commonly impacts behavior, speech, language, decision making, and memory, interfering with daily life and function. While both FTD and Alzheimer’s disease are progressive degenerative diseases where symptoms get worse over time, they are caused by different proteins in the brain that accumulate and lead to damage of the brain cells. FTD causes nerve cell damage in the frontal and/or temporal lobes of the brain, which leads to loss of function in these regions.

What are the symptoms of FTD?

Symptoms of FTD can vary, depending on what part of the brain it impacts and the underlying problem. A person with FTD may experience:

  • Changes in behavior, such as:
    • Saying or doing inappropriate things
    • Developing new obsessions or compulsions
    • Severe loss of motivation
    • Changes in diet, such as obsessively eating sweets
  • Changes in language (also called aphasia), such as:
    • Difficulty finding words
    • Trouble understanding words
    • A loss of normal grammar
    • Difficulty pronouncing words
  • Changes in executive function, such as:
    • Difficulty with complex decision making, multi-step tasks like cooking and packing, or using a phone, computer, or remote control

Who is at risk?

People at highest risk for developing FTD are those with genetic mutations causing FTD. “FTD is much more commonly genetically inherited than Alzheimer’s disease is,” Cliatt Brown says. People with a family history of young onset dementia (around age 60 or younger) or a family history of ALS, also known as Lou Gehrig’s disease, are also at higher risk of FTD. This is because there may be a genetic mutation that caused dementia or ALS in their relatives.

How is FTD diagnosed?

A neurologist will usually discuss cognitive and behavioral changes with the patient, family members, or close friends to see how changes have developed over time. A patient may also undergo:

  • Cognitive testing
  • MRI brain imaging to see the structure of the brain
  • PET scan of the brain to determine whether areas of the brain aren’t functioning as well as they should

Shrinking of the frontal and/or temporal lobes is usually an indicator of FTD. Finding the correct diagnosis is important in determining what type of medications should be used. For example, Alzheimer’s disease has different medications that are not effective for patients with FTD.

Finding a clear diagnosis can also provide answers to the patient and their family. “When a loved one is having significant cognitive decline that impacts the ability to function in daily life, it can be very frustrating,” Cliatt Brown says. “Finding the diagnosis gives them an answer.” This diagnosis can also help a family better understand their personal risk of developing FTD.

How does FTD progress?

FTD worsens gradually over several years. “Unfortunately, it does shorten the life span,” Cliatt Brown says. “The average survival time from the time of development of symptoms is about 8 to 10 years, but it can vary person to person.” While some people can progress fast, others may have a slower progression.

Is FTD treatable?

There are currently no treatments to stop or slow down progression of FTD.

How can a family member help?

If you notice any changes to behavior or speech of a loved one, talk to their primary care doctor. A primary care doctor can perform initial cognitive screening to determine whether additional tests are needed. Your loved one may be referred to a neurologist to investigate further.

Watching a family member or loved one go through FTD can be difficult. “It can be really hard for them not only to see these changes happen and not be able to do anything about it, but also to help take over those roles that their loved one isn’t able to do anymore,” Cliatt Brown says.

Talk to your doctor about resources that are available to help you during this life transition. You can find more resources through the University of Utah Aging Brain Care Program, the Association for Frontotemporal Degeneration, and the Alzheimer’s Association.