Frontotemporal dementia

Frontotemporal dementia is a rare type of dementia caused by a build-up of abnormal proteins in the brain.

The term 'dementia' describes a loss of mental ability that is more than would be expected with ageing. It is sufficient to affect day-to-day activities and gets progressively worse.

Frontotemporal dementia is similar to Alzheimer's disease in that it is caused by a build-up of abnormal proteins in the brain, leading to a progressive loss of brain cells. The affected areas of the brain gradually function less well and shrink.

It tends to affect the frontal and temporal lobes of the brain (the front and sides) in particular, and often starts at a younger age than usually seen in Alzheimer's disease.

The frontal lobes are at the front of the brain, behind the forehead – they regulate our ability to plan and organise ourselves and are important in regulating our behaviour. The temporal lobes are on either side of the brain above and behind the ears, and they organise memory and language.

Several different conditions can affect these lobes and 'frontotemporal dementia' is the broad term to describe them all (read about the types of frontotemporal dementia). Symptoms vary depending on the exact areas of the brain affected.

What are the warning signs?

Generally, frontotemporal dementia causes slowly progressive problems with language, thinking, emotions and behaviour. It can profoundly alter a person's character and social conduct – for example, they may either become impulsive and much more outgoing, or uninterested and lacking in energy, depending on the type of disease they have.

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

Frontotemporal dementia typically starts between the ages of 45 and 65, although it can sometimes affect younger people as well as the elderly.

Learn more about the symptoms of frontotemporal dementia.

How does the disease progress?

The disease worsens over a period of time – typically three to 10 years – although it varies widely between patients (some cases can be more rapid; in others it can be much slower).

Over time, new symptoms may develop that can be quite different to those already present. Past problems might disappear and new ones emerge.

People with frontotemporal dementia can become isolated and socially withdrawn as the illness progresses.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. They may behave in rude or insulting ways.

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

What are the causes?

Frontotemporal dementia is caused by a build-up of abnormal proteins in the brain.

The abnormal proteins clump together and become toxic to the brain cells, causing them to die. The frontal and temporal lobes of the brain are typically most affected and as cells are lost, the brain areas shrink over time.

It's not fully understood why these abnormal proteins build up, but there is often a genetic cause. About a third to a half of cases of frontotemporal dementia are inherited and run in families.

Learn more about the causes of frontotemporal dementia.

How is frontotemporal dementia diagnosed?

If your GP thinks you may have dementia, you may be referred to a memory clinic or another specialist clinic, where you will be asked about your symptoms and have a physical check-up, memory test and cognitive test. You may also have blood tests and brain scans.

Learn more about the diagnosis of frontotemporal dementia.

How is it managed?

There is currently no cure for frontotemporal dementia, nor any drugs that will slow the progress of the disease.

Behaviour modification may help control challenging or dangerous behaviours, and antidepressants can be effective in improving some of the symptoms. Learn more about the management of frontotemporal dementia.

Rehabilitative support such as physiotherapy, occupational therapy and speech therapy aim to help with adapting to lost functions, and dementia activities such as 'memory cafes' and some psychological therapies can help with managing the symptoms.

If you have dementia, your future health and social care needs will need to be assessed and a care plan will be drawn up.

For more information, read about the management of frontotemporal dementia.

Support and advice

If you or a loved one has been diagnosed with dementia, remember that you are not alone. The NHS, social services and voluntary organisations such as The Frontotemporal Dementia Support Group will be able to provide advice and support to help you and your family.

More information