The early symptoms of FTD vary from person to person and depend on which area of the brain is affected.

In behavioural variant frontotemporal dementia, the parts of the frontal lobe that control social behaviour may be most affected. In semantic dementia, the parts of the temporal lobe that support understanding of language and factual knowledge are most affected. In progressive non-fluent aphasia, the parts of the frontal lobe that control speech are most affected.

Symptoms get worse over time, gradually leading to more widespread problems with day-to-day function. Some people may develop movement problems similar to those seen in Parkinson’s disease. Over time, people with FTD can find it harder to swallow, eat, communicate and move, and may have difficulties with bladder or bowel control. They will require more support to look after themselves.

The speed of change can vary widely. The average survival time after symptoms start is about eight years, but some people live with the condition for much longer than this

Symptoms may include:

  • Changes in emotions - this may include a change in how people express their feelings towards others or a lack of understanding of other people’s feelings.
  • Lack of interest - people may become withdrawn or lose interest in looking after themselves, such as failing to maintain a normal level of personal hygiene.
  • Inappropriate behaviour - this might include making inappropriate jokes or showing a lack of tact. Humour or sexual behaviour may change. Some people become impulsive or easily distracted.
  • Obsessions – people might develop unusual beliefs, interests or obsessions.
  • Diet - changes in food preference such as eating more sweet things, over-eating or over-drinking.
  • Awareness - do not realise there are changes in their personality or behaviour.
  • Decision making - difficulty making simple plans and decisions.
  • Language - decline in language abilities. This might include difficulty speaking or understanding the meaning of words. People may repeat words and phrases or forget what words mean.
  • Recognition - difficulty recognising people or knowing what objects are for.
  • Memory - day-to-day memory may be relatively unaffected in the early stages, but problems with attention and concentration could give the impression of memory problems.
  • Movement problems - around one in every eight people with behavioural variant FTD also develops movement problems of motor neurone disease. This can include stiff or twitching muscles, muscle weakness and difficulty swallowing.

What is Frontotemporal dementia?

Information in this introductory booklet is for anyone who wants to know more about frontotemporal dementia (FTD). This includes people living with FTD, their carers, families and friends.

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This information was updated in January 2020 and is due for review in January 2022. It does not replace any advice that doctors, pharmacists or nurses may give you. Please contact us if you would like a version with references.

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