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Understanding frontotemporal dementia

Frontotemporal dementia (FTD) is an umbrella term for a group of dementias that mainly affect the frontal and temporal lobes of the brain, which are responsible for personality, behaviour, language and speech.   

Unlike other types of dementia, memory loss and concentration problems are less common in the early stages.  

FTD is a rare form of dementia affecting around one in 20 people with a dementia diagnosis.  

In FTD, there is an abnormal build-up of proteins within the brain, which damages the cells.  

It is not known why this occurs, but it is thought to have a genetic link in about one third of people with the diagnosis.  

FTD is most common in people aged 40 to 60 but can also affect younger or older people. 

There are two types of FTD – behavioural variant FTD (bvFTD) and primary progressive aphasia (PPA). 

  • reduced motivation  
  • lack of interest in things the person used to enjoy 
  • inappropriate behaviour, eg making suggestive comments, staring, being over-familiar with people   
  • reduced empathy  
  • difficulty focusing on tasks  
  • obsessive or repetitive behaviour, eg repeating phrases or gestures, hoarding  
  • changes in behaviour regarding food or drink, eg craving sweet foods, poor table manners, overeating, drinking too much alcohol  
  • difficulty with planning, organising and decision-making  
  • lack of awareness of the changes in themselves (lack of insight)  

There are three types of PPA, which all tend to affect language rather than behaviour.   

Semantic variant or semantic dementia (SD) 

  • difficulty remembering, finding or understanding words  
  • gradual loss of vocabulary  
  • forgetting what common objects are and what they do, eg kettle, toaster, keys 
  • as SD progresses, the changes are likely to become similar to those experienced in bvFTD 

Nonfluent variant or progressive nonfluent aphasia (PNFA)  

  • difficulty using speech, including forming sentences and using grammar correctly  
  • difficulty conducting conversations – eg hesitation, using shortened sentences or using the wrong words  

Logopenic variant or logopenic aphasia (LPA)   

  • difficulty finding words  
  • stopping speaking mid-sentence as they search for the right word  
  • unlike in SD, people with early LPA are unlikely to forget the meaning of words or what common objects do   

Progressive supranuclear palsy (PSP) is a frontotemporal dementia. It is characterised by difficulties with balance, movement, vision, speech and swallowing. It is caused by progressive damage to the cells in the brain that control eye movements.

It affects around 4,000 people in the UK. Some also experience changes in their behaviour, clumsiness or stiffness and cramped handwriting. Because its initial symptoms can resemble other conditions such as Alzheimer’s or Parkinson’s, it can be difficult to diagnose.

For further information and support, visit the PSP Association website.

Corticobasal degeneration (CBD) is a frontotemporal dementia. It is a rare condition where brain cells become damaged over time and certain sections of the brain start to shrink. It is a progressive condition. This means that the initial symptoms will become more severe over time, and new symptoms may also develop.

Initial symptoms of CBD include

  • sudden difficulties in controlling certain limbs
  • loss of balance and co-ordination

As the condition progresses, symptoms become more wide ranging and troublesome, such as

  • muscle spasms and stiffness
  • ongoing decline of mental functions (dementia)
  • difficulties swallowing food and liquid
  • difficulties speaking

Find more information and support at the PSP Association website.

Getting a diagnosis of FTD can be difficult for reasons including:  

  • lack of awareness of the early signs  
  • mistaking signs for other conditions such as depression, work stress and relationship problems 
  • the misconception that dementia only occurs in older people and usually involves memory problems 
  • the person’s reluctance to seek medical advice – this may be because they lack awareness of the changes in themselves, or are afraid of a dementia diagnosis

However, if you are concerned that someone may have FTD, it is important to encourage them to see their GP.  

If they are reluctant, you could contact the GP by phone, email or letter and outline your concerns – while the GP will not be able to breach the person’s confidentiality, they should consider the information and decide whether to call them in for an appointment or arrange a home visit.

If possible, go to the appointment with the person so you can share your views and concerns.   

The GP should:  

  • take a full history including: 
    • the person’s symptoms  
    • when they started 
    • how they affect the person’s life 
    • any family history of dementia 
  • perform/arrange blood and urine tests and physical examinations to rule out other physical or mental health issues 
  • conduct a brief assessment of their memory and cognitive skills – but this may be unreliable for people with FTD as memory problems are less common than in some other types of dementia

If the person needs further investigations, they should be referred to a specialist in FTD for a comprehensive assessment of attention, memory, fluency, language, visuospatial abilities and behaviour changes. 

They may also have an MRI scan of the brain.  

To speak to a dementia specialist Admiral Nurse about FTD or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can also book a phone or video appointment with an Admiral Nurse.

Dementia UK information

Other resources

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