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Frontotemporal dementia

Key points

  • Frontotemporal dementia is a brain condition causing progressive damage to either or both the frontal or temporal lobes of the brain. There are four types of frontotemporal dementia: behavioural-variant frontotemporal dementia, primary progressive aphasia, semantic dementia and progressive non-fluent aphasia.

  • The condition typically affects people between 45 and 65, with symptoms depending on which type of frontotemporal dementia is diagnosed.

  • There is no cure for frontotemporal dementia, but therapies can help manage the condition, and some symptoms can be treated. Support is available.

What is frontotemporal dementia?

About frontotemporal dementia

Frontotemporal dementia is a brain condition that causes damage to two parts of your brain: the frontal lobe and the temporal lobe.

If you’ve been diagnosed with frontotemporal dementia, you may experience changes in your behaviour, personality, language and movement. Your memory isn’t always affected, especially in the early stages. These changes get worse over time.

There’s no known cure for frontotemporal dementia yet. But treatment can help with some symptoms, and support is available.

Causes of frontotemporal dementia

Anyone can develop frontotemporal dementia, but it gets more likely as you get older. It often develops between the ages of 40 and 65, but it can affect older or younger people too. 

Currently, we don’t understand well why most people develop frontotemporal dementia, but:

  • almost a third of people with frontotemporal dementia have a family history of dementia
  • ten to fifteen per cent of people with frontotemporal dementia inherited it in their genes — this is called familial frontotemporal dementia
  • a very small number of people with frontotemporal dementia also develop conditions that affect their movement, like motor neurone disease, corticobasal syndrome and progressive supranuclear palsy.

Types of frontotemporal dementia

Common types of frontotemporal dementia include:

Behavioural-variant frontotemporal dementia

Behavioural-variant frontotemporal dementia is when the brain’s frontal lobes are affected first. You’ll experience changes in your personality and behaviour as the areas of your brain that control conduct, judgement, empathy and foresight become damaged.

Primary progressive aphasia

Primary progressive aphasia is when the temporal lobes are affected first. You’ll experience a loss of language skills. Other aspects of thinking, perception and behaviour are not affected as much in the early stages.

There are three types of primary progressive aphasia:

Progressive non-fluent aphasia

Progressive non-fluent aphasia is when you develop problems speaking and, over time, lose your ability to speak fluently.

Semantic dementia

Semantic dementia is when you lose your ability to assign meaning to words, think of the right word, or name people and objects. You may also experience changes in your behaviour, like becoming obsessed with routines and emotional responses.

Reading, spelling, comprehension and expression aren’t usually affected. You might also keep decision-making or motor skills. You can usually do daily activities until very late in the condition.

Logopenic aphasia

Logopenic aphasia is when you keep your knowledge of what words mean, but have increasing trouble thinking of the right word to say. Because of this, it might take you a long time to say things.

You might also struggle to repeat things you or someone else just said. Long sentences might become harder to read.

Signs and symptoms of frontotemporal dementia

Frontotemporal dementia affects everyone differently. The condition is progressive, meaning your symptoms may be mild at first but get worse over time.

Each type of frontotemporal dementia has its own signs and symptoms.

Behavioural-variant frontotemporal dementia symptoms

If you have behavioural-variant frontotemporal dementia, you might:

  • stop taking care of yourself and your personal hygiene
  • lose motivation, abandoning hobbies or avoid social contact
  • become easily distracted or impulsive
  • feel different about food, like craving sweet or unusual foods, or overeating
  • have difficulty in reasoning, judging things and planning
  • become less flexible, more selfish or unable to adapt to new situations
  • lose empathy and emotional warmth
  • lose your inhibitions, like saying or doing things you normally wouldn’t
  • start doing things over and over, like collecting, counting and tapping.

Primary progressive aphasia symptoms

If you have primary progressive aphasia, you might:

  • gradually lose language skills, including:
    • speaking
    • reading
    • writing
    • understanding language.

Progressive non-fluent aphasia symptoms

If you have progressive non-fluent aphasia, you might:

  • lose your ability to speak 
  • find it harder to read and write
  • have trouble following conversations, communicating with groups of people, or using your phone
  • say the wrong word, get sentences wrong and use shorter phrases
  • speak more slowly, stutter or slur your words.

Semantic dementia symptoms

If you have semantic dementia, you might:

  • have trouble finding the right word or someone’s name
  • forget what familiar objects are called or used for
  • lose your vocabulary, using fewer, more general words
  • lose your ability to understand words, especially uncommon ones.
  • sound normal when you speak, but the words don’t make sense.

Logopenic aphasia symptoms

If you have logopenic aphasia, you might:

  • have trouble thinking of the right word to say
  • take a long time to say things
  • have trouble repeating things you or someone else just said
  • have trouble understanding long or complicated sentences.

Diagnosing frontotemporal dementia

Currently there is no single test to tell if a person has frontotemporal dementia.

A medical specialist will only make a diagnosis of frontotemporal dementia after careful assessment. This might include:

  • a detailed medical history
  • a physical examination
  • blood and urine tests
  • a psychiatric assessment
  • memory and thinking tests
  • brain scans.

The specialist will also talk to family or other people who have noticed your symptoms. They will ask what symptoms they’ve noticed, when they started and how often they happen. They will only do this with your permission.

The progression of frontotemporal dementia

Frontotemporal dementia is a terminal illness. Over time, it will affect more areas of your brain. You will experience more symptoms, which will become more severe. This process can take several years. 

Dementia is different for everyone who has it. Your symptoms may vary, and they might progress faster or slower than in other people.

Treatment and management of frontotemporal dementia

Right now, there’s no known cure for frontotemporal dementia, and no treatment to slow its progress. Researchers are working to find better treatments.

But there are therapies that can help you:

  • Counselling: talk to a counsellor or psychologist to help you with changes in your behaviour and mood.
  • Occupational therapy: an occupational therapist can help improve your everyday life at home.
  • Speech therapy: a speech therapist can help with the way you talk.

If you’re having other problems as a result of your dementia, like depression or trouble sleeping, talk to your doctor.

Seeking support

Along with Dementia Australia, the following organisations provide support and resources:

Dementia expert webinar: frontotemporal dementias, with Prof Amy Brodtmann

How Dementia Australia can help

Whatever your experience of dementia, we're here for you.

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Last updated
25 September 2024