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The Guardian - UK
The Guardian - UK
Politics
Nicola Davis Science correspondent

Frontotemporal dementia: what is it and what is known about its causes?

Bruce Willis
The family of the actor Bruce Willis announced on Thursday that he has the condition. Photograph: Dominick Reuter/AFP/Getty Images

With the family of the actor Bruce Willis having announced this week that he has frontotemporal dementia, we take a look at what is known about the condition.

What is frontotemporal dementia?

As its name suggests, this type of dementia affects the brain’s frontal and temporal lobes, which are respectively found just behind the forehead and at the sides of the head – where the temples are.

These areas of the brain are involved in language, behaviour, personality, emotions and a range of other functions. As a result, people with frontotemporal dementia can experience personality and behaviour changes – such as developing repetitive behaviour or acting impulsively – as well as difficulties with speech, problems with organisation or planning and, later on, developing memory difficulties. How quickly symptoms worsen varies from person to person.

Who does it affect?

Frontotemporal dementia is known to affect people at a younger age than many other forms of dementia, such as Alzheimer’s disease, with most cases diagnosed when individuals are about 45-65 years old.

It is less common than some other forms of dementia. Alzheimer’s Research UK suggests that it accounts for less than one in 20 of all dementia cases. It has affected several high-profile people, including the Monty Python star Terry Jones, and the Beastie Boys musician John Berry.

What causes it?

Frontotemporal dementia is caused by a buildup of particular proteins that form clumps inside brain cells, causing damage to the frontal and temporal lobes.

While the risk factors for the condition are still being unpicked, in some cases there is a genetic component. According to the NHS: “Around one in eight people who get frontotemporal dementia will have relatives who were also affected by the condition.”

These cases, known as “familial FTD”, are linked to a faulty gene, with the child of someone who has such a gene having a one in two chance of also having it. If an individual has a close family member with familial FTD, it is possible for them to have a genetic test to determine if they also carry the gene.

Is there any cure?

Sadly, no. While drugs such as antidepressants – and, more rarely, antipsychotics – are sometimes used to help manage certain behavioural changes, there is no medication to stop frontotemporal dementia itself.

However, as the Alzheimer’s Society says, there are ways to help people with frontotemporal dementia maintain a good quality of life: for example, speech and language therapists can help those affected to find new ways to use language and communicate, while physiotherapy can be used to help with problems around movement.

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