Introduction 

Frontotemporal dementia is an uncommon type of dementia estimated to affect around 16,000 people in the UK.

The term "dementia" describes a loss of mental ability (cognitive impairment) that is more than would be expected with ageing. It's enough to affect day-to-day activities and gets progressively worse.

Frontotemporal dementia tends to affect the frontal and temporal lobes of the brain (the front and sides) in particular. These parts of the brain are largely responsible for language and the ability to plan and organise, and are important in controlling behaviour.

Frontotemporal dementia often starts at a younger age than usually seen in other types of dementia. Most cases are diagnosed in people aged 50-65, but it can also affect younger or older people.

Signs and symptoms

Symptoms of frontotemporal dementia vary at first, depending on the exact area of the brain affected.

Generally, it causes slowly progressive problems with behaviour, language and thinking. It can profoundly alter a person's character – for example, they may become impulsive and much more outgoing, or uninterested and lacking initiative.

Other typical symptoms include inappropriate behaviour in social situations and progressive difficulty with speech and language.

Read more about the symptoms of frontotemporal dementia.

What causes frontotemporal dementia? 

There are several different causes of frontotemporal dementia, but they all involve a build-up of abnormal proteins in the brain.

The abnormal proteins clump together and become toxic to the brain cells, which eventually kills them and causes the affected areas of the brain to shrink over time.

It's not fully understood why these abnormal proteins build up, but there is often a genetic link. Up to 40% of people with frontotemporal dementia have a family history of the condition.

Diagnosing frontotemporal dementia

See your GP if you think you may have early symptoms of dementia. If you're worried about someone else, encourage them to make an appointment and perhaps suggest going along with them.

Your GP can do some simple checks to see if there is a chance you could have dementia, and they can refer you to a specialist if necessary.

The specialist will carry out a physical check-up and an assessment of your mental abilities. You may also have blood tests and brain scans.

The results of these checks and tests will give your doctor a good idea as to whether your symptoms are caused by frontotemporal dementia, another type of dementia, or something else entirely.

Read more about the diagnosis of frontotemporal dementia.

How frontotemporal dementia is managed

There is currently no cure for frontotemporal dementia, nor any medications to slow it down. However, there are treatments and therapies that can help to reduce some of the symptoms.

For example, antidepressants may be effective in controlling some of the behavioural problems.

Support such as physiotherapy, occupational therapy and speech therapy help people adapt to lost functions. Dementia activities such as "memory cafes" and some psychological therapies can help with managing the symptoms.

Read more about treating frontotemporal dementia

Outlook

Frontotemporal dementia gets progressively worse, usually over a number of years.

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

Some lack the motivation to care for themselves and may need supervision and prompting. Home-based help is often needed, and some people will eventually need residential care in a nursing home.

The average survival time after symptoms start is around eight years, although this can vary significantly. Many people with the condition live with it for 10 years or more.

If you or a loved one has been diagnosed with dementia, you are not alone. The NHS, social services and voluntary organisations can provide advice and support to help you and your family.

More information

Living with dementia

Find dementia support services near you

Living well with dementia

Staying independent with dementia

Dementia activities

Looking after someone with dementia 

Dementia and your relationships 

Communicating with people with dementia

Coping with dementia behaviour changes

Care and support

Sources of help and support

Organising care at home 

Dementia and care homes

Dementia, social services and the NHS

Dementia and your money

Managing legal affairs for someone with dementia

End of life planning

The Frontotemporal Dementia Support Group

How you can help

Become a "Dementia Friend"

Talk it through with a dementia nurse

Share your dementia experiences


Page last reviewed: 28/01/2015

Next review due: 28/01/2017