Frontotemporal dementia

Expert reviewer, Professor Graham Stokes, psychologist and dementia specialist
Next review due December 2019

Frontotemporal dementia is a rarer type of dementia. It probably accounts for less than one in 20 cases of dementia. However, it is one of the commonest causes of dementia in people under 65. About one in five cases of dementia in under-65s are this type.

Senior woman sitting on stairs wiping sand off her feet

About frontotemporal dementia

Frontotemporal dementia is most often diagnosed in people in their 50s and 60s. Just under half of diagnosed cases of frontotemporal dementia run in families. Researchers have found a number of changes to genes that run in these families and cause frontotemporal dementia. Doctors don’t really know what causes the cases that don’t seem to run in families. There is some evidence that a head injury in the past could increase risk. Frontotemporal dementia is really a group of conditions. There are three different types, according to the main symptoms when the condition is diagnosed.

Half to two-thirds of cases are the ‘behavioural type’, where the main dementia symptom is that people lose their inhibitions. They may stop looking after themselves, behave tactlessly and seemingly rudely and be impulsive. In the second type, called the ‘aphasic type’, people lose the ability to speak fluently. In the third, called the ‘semantic type’, they continue to speak fluently but typically forget words and their meaning and fail to recognise familiar objects. Frontotemporal dementia does gradually worsen over time, although this can be a very slow process. People with the semantic type may have the condition for more than 10 years.

Symptoms of frontotemporal dementia

There isn't a single answer to the question 'what is frontotemporal dementia?' The three different types of frontotemporal dementia have different symptoms. As well as the frontotemporal dementia symptoms described below, around one in six people may also have symptoms similar to motor neurone disease (MND) such as muscle twitching and muscle weakness. Later in the course of frontotemporal dementia, some people may also have symptoms of Parkinson’s disease, such as tremors, slowness of movement and a lack of facial expression.

Find out more about Parkinson’s disease and motor neurone disease (MND).

Behavioural type frontotemporal dementia

The main feature of this type of frontotemporal dementia is a loss of inhibitions. The person may no longer seem themselves. They may gradually stop interacting socially or carrying out their usual hobbies or work activities. They may behave inappropriately in social situations, or say things that are rude or tactless. Other signs of this type of frontotemporal dementia are:

  • no longer looking after themselves in dress or personal hygiene
  • lack of concern for other people and ability to understand their feelings
  • difficulty planning, organising and making decisions
  • repeating behaviour, having rituals and sticking rigidly to routines
  • developing eating fads, overeating or an increasing liking for sweet foods

Generally, with this type of frontotemporal dementia, memory and mental abilities are less affected than behaviour in the early stages of the condition. In the later stages, people become increasingly less able to look after themselves. They may lose bladder or bowel control (incontinence).

Aphasic type frontotemporal dementia 

Aphasic means losing the ability to speak, so the main symptoms of this type of frontotemporal dementia affect people’s speech. This may begin with speech becoming slow and hesitant. The person may make errors in grammar that they wouldn’t have made before they had frontotemporal dementia. They may also find it difficult to follow long sentences, even though they can understand the individual words. Other signs include:

  • losing the ability to read and write
  • stuttering
  • having difficulty repeating words or sentences back to you

As the condition worsens, someone with aphasic type frontotemporal dementia may stop talking altogether.

Semantic type frontotemporal dementia

Semantics is the study of the meaning of words and phrases. People with this type of frontotemporal dementia often forget the meanings of words, but unlike aphasic frontotemporal dementia, they can still speak fluently. They may ask others what common words mean. Or they may not recognise a familiar object and what it’s used for.

With this type of dementia, memory is not usually as badly affected as with other types. However, people with semantic type frontotemporal dementia may not be able to recognise familiar faces.

How frontotemporal dementia develops

It can be difficult to diagnose frontotemporal dementia because it can come on very slowly. It is very helpful for the doctor to be able to talk to someone who knows the person well, and knows what they were like before any problems developed. It can be particularly hard to diagnose frontotemporal dementia in people who have personality or behaviour changes for other reasons, such as a head injury or alcohol abuse. Family history is also important. Although it isn’t yet possible to carry out gene tests for frontotemporal dementia, it may help the doctor to know if there have been other similar cases in the family.

Generally, frontotemporal dementia develops very slowly. On average, people have the condition for eight to 10 years. However, frontotemporal dementia can be very variable. People who develop motor neurone symptoms along with frontotemporal dementia may live with the condition for only three to five years, even if they have dementia treatment.

Generally with frontotemporal dementia, changes in personality, behaviour and language appear first, depending on which type of frontotemporal dementia it is. Because symptoms may be mild at first and worsen slowly, it may take two years or so before a correct frontotemporal dementia diagnosis is given.

As the condition develops, people may begin to develop more problems with memory and may become confused and disorientated. The three distinct types of frontotemporal dementia tend to ‘come together’ in terms of symptoms as they progress. For example, people with the behavioural type will eventually develop problems with language and those with the other types will eventually develop more changes in behaviour.

Difficulty planning and knowing how to carry out familiar tasks will mean that people with frontotemporal dementia will find it more difficult to manage day-to-day life. They’re likely to need help with more basic daily care, such as washing and dressing. Because the condition worsens over time, eventually many people need to be looked after all the time, which is often only possible in residential care.

Causes of frontotemporal dementia

The cause of frontotemporal dementia is damage to the frontal and temporal lobes of the brain. The frontal lobe is the part of the brain that deals with thought, decision-making and planning. The temporal lobe handles hearing and understanding of speech and language. Doctors don’t fully understand what causes the damage to these parts of the brain.

In around four out of 10 cases, frontotemporal dementia runs in families. Studying these familial cases, doctors have found specific changes in genes. They don’t know exactly how many cases of frontotemporal dementia are due to these changes. Current research estimates that it is between one in four and one in five. As yet, there are no tests available for these gene changes in healthy people.

Researchers have also found some typical features in brain cells of people with frontotemporal dementia. There are abnormal deposits of certain types of protein. There are abnormal deposits of both these proteins in Alzheimer’s disease too, so doctors know that they can be linked to dementia.

We don’t fully understand how the changes to genes and the abnormal protein deposits lead to the symptoms of frontotemporal dementia.

Some cases of frontotemporal dementia are a specific rare type called Pick’s disease. This used to be a term interchangeably used with frontotemporal dementia, but it now refers just to this specific rare type of dementia.

Medicines for frontotemporal dementia

There is sadly no cure for frontotemporal dementia. There are also no medicines that can specifically be used as frontotemporal dementia treatment. The medicines used to treat Alzheimer’s disease have not been shown to work in frontotemporal dementia, so doctors are unlikely to prescribe them.

Treatment is usually focused on supporting the person with frontotemporal dementia and their carers, and on managing symptoms. So the medicines someone is prescribed will depend on how the condition is affecting them and their behaviour. They may have:

  • medicines for anxiety, such as lorazepam, if they are agitated, irritable or restless
  • medicines called selective serotonin reuptake inhibitors (SSRIs) for depression or compulsive behaviour, such as fluoxetine (Prozac)
  • other anti-depressants that have a sedative effect, to help with sleep problems
  • medicines that are normally used for epilepsy, as they can help with excitability, restlessness and impulsive behaviour

Quite a few of the medicines used to manage frontotemporal dementia symptoms have sedative effects: they can make people drowsy and less responsive. It’s important with any type of dementia not to over-medicate or give too many medicines that have a sedative effect. This can increase confusion or memory problems. The doctor will regularly review medicines to make sure the person isn’t taking too many.

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Related information

    • Frontotemporal dementia. Patient Plus., last updated September 2014
    • Frontotemporal dementia. BMJ Best Practice., last updated October 2015
    • Organic illness. Oxford Handbook of Psychiatry (3rd ed. online). Oxford Medicine Online., published March 2013
    • Semantic. Oxford English Reference Dictionary. 2nd ed. Oxford University Press, 1996
    • Overview of cerebral function. MSD Manuals., last updated Sept 2015
    • Alzheimer’s dementia. BMJ Best Practice, last updated February 2016
    • Sudarshan C, Upadhya SC, Hegde AN. Role of the ubiquitin proteasome system in Alzheimer's disease. BMC Biochem 2007; (8), suppl 1
  • Produced by Nick Ridgman, Lead Health Editor, Bupa UK Health Content Team, December 2016
    Expert reviewer, Professor Graham Stokes, psychologist and dementia specialist
    Next review due December 2019

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