Frontotemporal dementia

Frontotemporal dementia (FTD) is a type of dementia that develops when cells in the front and temporal lobes of the brain are lost. It’s the second commonest type of dementia among people under 65, but also develops in older people. FTD affects parts of the brain that are responsible for behaviour, personality, recognition, and speech.

About frontotemporal dementia (FTD)

Dementia affects memory, behaviour, and how you think and communicate. There are many different types. In frontotemporal dementia (FTD), there is damage to the frontal and temporal lobes of your brain. These areas are generally associated with personality, behaviour, and language.

FTD accounts for less than one in 30 dementia cases. But it’s one of the commonest causes of dementia in people under 65. It often starts in people in their 50s and 60s, although it can develop in younger and older people too.

FTD affects people in different ways. Like other types of dementia, it gradually gets worse over time. How quickly this happens varies between people.

Causes of frontotemporal dementia

Frontotemporal dementia (FTD) is usually caused by proteins that damage the frontal and temporal lobes of the brain. The type of abnormal protein varies with the type of FTD.

It’s not clear exactly what causes these changes to happen in people with FTD. It may be partly because of genetic factors. Around three in 10 people with the condition have a strong family history. Sometimes, a single gene that causes FTD can be inherited from a parent. This is known as familial frontotemporal dementia. Other times, your genes may just increase your risk of developing FTD.

There is some evidence that a serious brain injury increases the risk of FTD later in life.

Symptoms of frontotemporal dementia

There are three main types of frontotemporal dementia (FTD). The type you have can be identified by the symptoms you have when you first develop it.

Behavioural variant frontotemporal dementia

This is the commonest type of frontotemporal dementia (FTD). It’s sometimes called Pick’s disease. Changes in behaviour and personality are the main early symptoms, including:

• inappropriate social behaviour – being rude, tactless or aggressive
• losing motivation
• lacking understanding and concern for others
• difficulty planning, organising and making decisions
• repetitive behaviour and obsessing about routines
• eating fads and overeating, especially sweet or fatty foods

Sometimes people also have speech symptoms. They may repeat what’s said to them or stop talking altogether.

Primary progressive non-fluent aphasia

This type of FTD mostly affects speech at first. Common symptoms include:

• speaking slowly and hesitantly
• getting grammar and the order of words wrong
• missing out words or saying the opposite of what they mean
• difficulty following long or complex sentences despite understanding individual words
• losing the ability to read and write
• stuttering
• difficulty in repeating words or sentences when asked to do so

As the condition worsens, people with this type of FTD may stop talking altogether.

Semantic dementia

This type of FTD causes people to forget the meaning of words. Symptoms include:

• asking what common or familiar words mean
• difficulty remembering what things are called or what words to use
• not recognising familiar faces or objects

People may also have changes in behaviour – for example, becoming obsessed with routines.

Symptoms affecting movement

A few people with FTD also develop movement difficulties. They may have muscle twitching, weakness and stiffness. These are symptoms of motor neurone disease (MND).

Or they may develop Parkinson’s disease symptoms – for example, tremors and slow movements.

Treatment for frontotemporal dementia (FTD)

There’s no cure for frontotemporal dementia (FTD) nor are there ways to slow down its progress. Treatment aims to support the person and their carers. There may be a team of health professionals managing the care.

Supportive care for FTD

The healthcare team will help to support the person with dementia. They should advise on practical support for day-to-day difficulties of FTD. They’ll also offer advice and information to carers on looking after themselves. They may recommend:

• physiotherapy to help with mobility
• occupational therapy to assess the home environment, transport, and self-care needs
• speech and language therapy to help with speech and difficulties swallowing
• behavioural therapies such as music and dance, behaviour management, and exercise
• support groups, counselling and respite care

Medicines

Medicines for other forms of dementia – for example, Alzheimer’s disease – don’t help FTD. Instead, doctors may prescribe medicines to help with symptoms, including:

• antipsychotic medicines for agitation, irritability, and restlessness (at the lowest possible dose, to avoid side-effects)
• antidepressant medicines (selective serotonin reuptake inhibitors or SSRIs) for behavioural symptoms
• medicines for sleep problems

A specialist may be able to inform you about opportunities to be involved in trials for new dementia therapies.

As a carer, it can be hard to remember which medicines people need to take, and when they need to take them. You may find it helpful to download our medicines planner for dementia carers (PDF, 0.8MB).

Taking lots of different medicines may increase confusion or memory problems. The doctor will regularly review medicines to make sure they aren’t taking too many.