Frontotemporal dementia

Your health experts: Dr Daniel Edward Anderson, Psychiatrist and Dr Naveen Puri, Bupa Clinics GP and Lead Physician, and Adrian Raby, General Practitioner
Content editor review by Pippa Coulter, January 2022
Next review due, January 2025

Frontotemporal dementia (FTD) is a type of dementia – a condition affecting your brain. It causes changes in behaviour, personality, speech and language. It’s a common cause of dementia in people under 65.

About frontotemporal dementia (FTD)

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

FTD accounts for about one in 50 dementia cases. But it’s one of the commonest causes 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

In frontotemporal dementia (FTD), certain areas of the brain become damaged. Proteins can build up inside brain cells (Pick’s bodies), and this may stop them from working properly.

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

Symptoms of frontotemporal dementia

There are three main types of frontotemporal dementia (FTD), depending on the type of 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 - repeating what’s said to them or stopping 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 repeating words or sentences back to you

As the condition worsens, they may stop talking altogether.

Semantic dementia

This type of FTD causes people to forget the meaning of words, although still speaking fluently. 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

They may have changes in behaviour too, such as becoming obsessed with routines.

Symptoms affecting movement

A few people with frontotemporal dementia also develop movement difficulties. They may have motor neurone disease (MND) symptoms, such as muscle twitching, weakness and stiffness.

Or they may have Parkinson’s disease symptoms, such as tremors and slow movements.

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How frontotemporal dementia progresses

Frontotemporal dementia (FTD) gradually gets worse over time. How quickly this happens varies between people. It can be faster in people with motor neurone disease (MND) alongside frontotemporal dementia.

As it progresses, FTD causes more problems with memory, behaviour and understanding. People also develop symptoms associated with the other types of frontotemporal dementia. So, people with the behavioural variant will develop language problems. Those with semantic or aphasic types develop behavioural changes.

As time goes on, managing day-to-day becomes more difficult. They’re likely to need help with washing and dressing. They may lose bladder or bowel control (incontinence). Eventually, they’ll need full-time care.

Diagnosing frontotemporal dementia (FTD)

Diagnosing dementia takes time. It can be particularly difficult to diagnose frontotemporal dementia (FTD) because it’s less common than other types of dementia and has similar symptoms to other conditions.

When diagnosing someone, their GP will talk to them about changes they’ve noticed. If possible, they’ll also want to talk to someone who knows them well. They can tell the doctor about symptoms the person may not be aware of. The GP will also want to know of any similar cases in the family.

The GP will usually do a physical examination and may order blood and urine samples to rule out other conditions. They may use a questionnaire to check for signs of dementia. If a GP suspects dementia, they will refer the person to a specialist. The specialist may recommend brain scans to confirm the type of dementia. These may include MRI and CT scans, or specialised brain scans called PET and SPECT scans.

Treatment for frontotemporal dementia (FTD)

There’s no cure for frontotemporal dementia (FTD), or a way slow it down. 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 should advise on practical support for day-to-day difficulties of FTD. They’ll offer advice and information to carers on looking after themselves, as well as supporting the person with dementia. 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, such as 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
other antidepressants for sleep problems
epilepsy medicines, which help with excitability, restlessness and impulsive behaviour

As a carer, it can be hard remembering which medicines people need to take, when. 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.

Outlook for frontotemporal dementia

Being prepared for what to expect can help with planning ahead. Someone with frontotemporal dementia (FTD) will need a lot of care as the condition progresses. How long someone may live varies between people and is difficult to predict. On average, people live for 8 to 10 years after diagnosis.

As time goes on, they’ll become less able to look after themselves and will usually need full-time care.

There is lots of support and advice available to help those affected by dementia. See our Other helpful websites for details of organisations that can help.

The first signs of tend to be changes in behaviour and personality, or speech and language. There are different types and it depends on which you have. See our symptoms section for more information.

Frontotemporal dementia (FTD) tends to cause fewer memory problems at first. It causes more behaviour and language problems in the early stages. It also tends to affect people at a younger age. Like Alzheimer’s, FTD gradually gets worse over time.

People with frontotemporal dementia (FTD) may not realise there’s anything wrong. Symptoms can come on slowly. Those closest to them may notice them first. Our Symptoms section has more information on what to look out for.