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Overview - Frontotemporal dementia

Dementia is caused by different diseases of the brain. Frontotemporal dementia is an uncommon type of dementia. It causes problems with behaviour and language.

Frontotemporal dementia affects the front and sides of the brain. These are known as the frontal and temporal lobes.

Dementia mostly affects people over 65. But frontotemporal dementia tends to start at a younger age. Most cases are diagnosed in people aged 45 to 65, although it can also affect younger or older people.

Frontotemporal dementia tends to develop slowly and get gradually worse over several years.

Symptoms of frontotemporal dementia

Signs of frontotemporal dementia can include:

  • personality and behavioural changes
  • language problems
  • problems with mental abilities
  • memory problems
  • physical problems

Personality and behaviour changes

These changes may include:

  • acting inappropriately or impulsively
  • appearing selfish or unsympathetic
  • neglecting personal hygiene
  • overeating
  • loss of motivation

Language problems

These problems may include:

  • speaking slowly
  • struggling to make the right sounds when saying a word
  • getting words in the wrong order or using words incorrectly

Problems with mental abilities

These problems may include:

  • getting distracted easily
  • struggling with planning and organisation

Memory problems

These only tend to happen later on, unlike more common forms of dementia such as Alzheimer's disease

Physical problems

There may also be physical problems, such as:

  • slow or stiff movements,
  • loss of bladder or bowel control (usually not until later on)
  • muscle weakness
  • difficulty swallowing

These problems can make daily activities increasingly difficult. The person may eventually be unable to look after themselves.

Find out more about the symptoms of frontotemporal dementia

When to see your GP

Non-urgent advice: Talk to your GP if:

  • you think you have early symptoms of dementia

The GP can do some simple checks to try to find the cause of your symptoms. They can refer you to a memory assessment service or another specialist for further tests if needed.

If you're worried about someone else, encourage them to see their GP. You could suggest going with them.

Causes of frontotemporal dementia

Frontotemporal dementia is caused by clumps of abnormal protein forming inside brain cells. These are thought to damage the cells and stop them working properly.

The proteins mainly build up in the frontal and temporal lobes of the brain at the front and sides. These are important for controlling language, behaviour, and the ability to plan and organise.

It's not understood why this happens but there's often a genetic link. Around 1 in 8 people who get frontotemporal dementia have relatives who were also affected by the condition.

Diagnosing frontotemporal dementia

There's no single test for frontotemporal dementia.

You will usually have different tests and assessments to diagnose or rule out frontotemporal dementia.

Assessment of symptoms

It's normally helpful to have somebody who knows you well to give an account of your symptoms. This is because someone with frontotemporal dementia may not be aware of changes in their behaviour.

Assessment of mental abilities

This will usually involve a number of tasks and questions.

Blood tests

These are used to rule out conditions with similar symptoms.

Brain scans

An MRI scan, a CT scan or a PET scan can detect signs of dementia. They can help identify which parts of the brain are most affected, or help rule out other problems with the brain.

Lumbar puncture

A lumbar puncture tests the spinal fluid (fluid that surrounds and supports the brain and spine). This may be useful to rule out Alzheimer's disease as the cause of symptoms.

Treatments for frontotemporal dementia

There's currently no cure for frontotemporal dementia or any treatment that will slow it down.

But there are treatments that can help control some of the symptoms, possibly for several years.

Treatments include:

  • medicines – to control some of the behavioural problems
  • therapies – such as physiotherapy, occupational therapy, and speech and language therapy
  • support groups – who can offer tips on managing symptoms

Find out more about treatment for frontotemporal dementia

Outlook for frontotemporal dementia

How quickly frontotemporal dementia gets worse varies from person to person and is very hard to predict.

People with the condition can become socially isolated as the illness progresses. They may not want to spend time in the company of others, or may behave in rude or insulting ways.

Most people will need home-based help at some stage. Some people will eventually need care in a nursing home.

The average survival time after symptoms start is around 8 to 10 years. But some people live much longer than this.

Getting support

If you or a loved one has been diagnosed with dementia, remember you're not alone. There are supports in your community that can help you live with dementia.

These include:

Content supplied by the NHS and adapted for Ireland by the HSE

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This project has received funding from the Government of Ireland’s Sláintecare Integration Fund 2019 under Grant Agreement Number 123.

Page last reviewed: 26 August 2021
Next review due: 26 August 2024