Frontotemporal Dementia

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Introduction

Frontotemporal dementia

Frontotemporal dementia is an uncommon type of dementia that mainly affects the front and sides of the brain (frontal and temporal lobes) and causes problems with behaviour and language.

Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain.

Dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age. Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.

Like other types of dementia, frontotemporal dementia tends to develop slowly and get gradually worse over several years.

This page covers:

Symptoms

Getting medical advice

Tests and diagnosis

Treatment

Outlook

Causes

Other names for frontotemporal dementia

Symptoms of frontotemporal dementia

Signs of frontotemporal dementia can include:

  • personality and behaviour changes - acting inappropriately or impulsively, appearing selfish or unsympathetic, neglecting personal hygiene, overeating, or loss of motivation
  • language problems - speaking slowly, struggling to make the right sounds when saying a word, getting words in the wrong order, or using words incorrectly
  • problems with mental abilities - getting distracted easily, struggling with planning and organisation
  • memory problems - these only tend to occur later on, unlike more common forms of dementia, such as Alzheimer's disease

There may also be physical problems, such as slow or stiff movements, loss of bladder or bowel control (usually not until later on), muscle weakness or difficulty swallowing.

These problems can make daily activities increasingly difficult, and the person may eventually be unable to look after themselves.

Read more about the symptoms of frontotemporal dementia.

Getting medical advice

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

Your GP can do some simple checks to try to find the cause of your symptoms, and they can refer you to a memory clinic or another specialist for further tests if needed.

Read more about getting a dementia diagnosis.

Tests for frontotemporal dementia

There's no single test for frontotemporal dementia.

The following may be needed to make a diagnosis:

  • an assessment of symptoms - it's normally helpful to have somebody who knows the person well to give an account of their symptoms, especially as someone with frontotemporal dementia may not be aware of changes in their behaviour
  • an assessment of mental abilities - this will usually involve a number of tasks and questions
  • blood tests - to rule out conditions with similar symptoms
  • brain scans - such as an MRI scan, a CT scan or a PET scan; these can detect signs of dementia and help identify which parts of the brain are most affected, or help rule out other problems with the brain
  • lumbar puncture - to test the spinal fluid; this may be useful to rule out Alzheimer's disease as the cause of symptoms

Read more about the tests used to diagnose dementia.

Treatments for frontotemporal dementia

There's currently no cure for frontotemporal dementia or any treatment that will slow it down.

But there are treatments that can help control some of the symptoms, possibly for several years.

Treatments include:

  • medicines - to control some of the behavioural problems
  • therapies - such as physiotherapy, occupational therapy, and speech and language therapy for problems with movement, everyday tasks and communication
  • dementia activities - such as memory cafés, which are drop-in sessions for people with memory problems and their carers to get support and advice
  • support groups - who can offer tips on managing symptoms from dementia experts and people living with frontotemporal dementia, and their families

Read more about how frontotemporal dementia is treated

Outlook for frontotemporal dementia

How quickly frontotemporal dementia gets worse varies from person to person and is very difficult to predict.

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

Home-based help will usually be needed at some stage, and some people will eventually need care in a nursing home.

The average survival time after symptoms start is around eight years. But this is highly variable and some people live much longer than this.

If you or a loved one has been diagnosed with dementia, remember you're not alone. The NHS and social services, as well as voluntary organisations and specialist support groups, can provide advice and support for you and your family.

Causes of frontotemporal dementia

Frontotemporal dementia is caused by clumps of abnormal protein forming inside brain cells. These are thought to damage the cells and stop them working properly.

The proteins mainly build up in the frontal and temporal lobes of the brain at the front and sides. These are important for controlling language, behaviour, and the ability to plan and organise.

It's not fully understood why this happens, but there's often a genetic link. About one in every three people with frontotemporal dementia has a family history of dementia.

If you have a family history of frontotemporal dementia, you may want to consider talking to your doctor about being referred to a geneticist and possibly having a genetic test to see if you're at risk.

There's a lot of research being done to try to improve understanding of the causes of frontotemporal dementia so treatments can be discovered.

If you're interested in helping with research, you can speak to your doctor or register your interest on Join Dementia Research.

Other names for frontotemporal dementia

Doctors sometimes use different names to describe frontotemporal dementia. These include:

  • FTD
  • Pick's disease
  • frontal dementia
  • frontotemporal lobar degeneration
  • behavioural variant frontotemporal dementia
  • primary progressive aphasia
  • semantic dementia
  • progressive non-fluent aphasia

More detailed information about these different terms and types of frontotemporal dementia can be found on the FTD Talk website.


Symptoms

Symptoms

Frontotemporal dementia usually causes changes in behaviour or language problems at first.

These come on gradually and get worse slowly over time.

Eventually, most people will experience problems in both of these areas. Some people also develop physical problems and difficulties with their mental abilities.

Behaviour and personality changes

Many people with frontotemporal dementia develop a number of unusual behaviours they're not aware of.

These can include:

  • being insensitive or rude
  • acting impulsively or rashly 
  • loss of inhibitions
  • seeming subdued
  • losing interest in people and things
  • losing drive and motivation
  • inability to empathise with others, seeming cold and selfish
  • repetitive behaviours, such as humming, hand-rubbing and foot-tapping, or routines such as walking exactly the same route repetitively
  • overeating, a change in food preferences, such as suddenly liking sweet foods, and poor table manners
  • neglecting personal hygiene

As the condition progresses, people with frontotemporal dementia may become socially isolated and withdrawn.

Language problems

Some people experience problems with speech and language, including:

  • using words incorrectly - for example, calling a sheep a dog
  • loss of vocabulary 
  • repeating a limited number of phrases
  • forgetting the meaning of common words
  • slow, hesitant speech
  • difficulty making the right sounds to say words
  • getting words in the wrong order
  • automatically repeating things other people have said

Some people gradually lose the ability to speak, and can eventually become completely mute.

Problems with mental abilities

Problems with thinking don't tend to occur in the early stages of frontotemporal dementia, but these often develop as the condition progresses.

These can include:

  • difficulty working things out and needing to be told what to do 
  • poor planning, judgement and organisation
  • becoming easily distracted
  • thinking in a rigid and inflexible way
  • losing the ability to understand abstract ideas
  • difficulty recognising familiar people or objects
  • memory difficulties, although this isn't common early on

Physical problems

In the later stages, some people with frontotemporal dementia develop physical problems and difficulties with movement.

These can include:

Some people have frontotemporal dementia overlapping with other neurological (nerve and brain) problems, including:

Getting medical advice

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

Your GP can do some simple checks to try to find out the cause of your symptoms, and may refer you to a specialist for further tests.

It's usually very helpful to have someone at the consultation who knows you well and can give the specialist another perspective on your symptoms.

Read more about:

Getting a dementia diagnosis

Tests used to diagnose dementia

Advice if you're worried someone else could have dementia


Treatment

Treatment

There's currently no cure for frontotemporal dementia, but there are treatments that can help manage some of the symptoms.

This page covers:

Care plans

Medication

Support and other therapies

End of life and legal issues

Help and advice for carers

Care plans

Before treatment starts, your current and future health and social care needs will be assessed, and a care plan drawn up.

This is a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance.

These may be:

  • what support you or your carer need for you to remain as independent as possible - including whether you might need care at home or in a nursing home
  • whether there are any changes that need to be made to your home to make it easier to live in
  • whether you need any financial assistance

Read more about care plans.

Medication

Medication can't stop frontotemporal dementia getting worse, but it can help reduce some of the symptoms for some people.

The following medicines may help:

  • antidepressants - antidepressants called selective serotonin reuptake inhibitors (SSRIs) may help control the loss of inhibitions, overeating and compulsive behaviours seen in some people
  • antipsychotics - these are rarely used, but if needed they can help control severely challenging behaviour that's putting the person with dementia or others around them at risk of harm

The medications for Alzheimer's disease aren't effective for frontotemporal dementia.

Support and other therapies

In addition to medication, there are a number of therapies and practical measures that can help make everyday living easier for someone with dementia.

These include:

  • occupational therapy - to identify problem areas in everyday life, such as getting dressed, and help work out practical solutions
  • speech and language therapy - to help improve any communication or swallowing problems
  • physiotherapy - to help with movement difficulties
  • relaxation techniques - such as massage, and music or dance therapy
  • social interaction, leisure activities and other dementia activities - such as memory cafés, which are drop-in sessions for people with memory problems and their carers to get support and advice
  • strategies for challenging behaviour - such as distraction techniques, a structured daily routine, and activities like doing puzzles or listening to music
  • incontinence products if needed

It may also be helpful to get in touch with a support group, such as Rare Dementia Support, the Alzheimer's Society or Dementia UK.

Read more about living well with dementia.

End of life and legal issues

If you've been diagnosed with dementia, you might want to make arrangements for your care that take into account the decline in your mental abilities.

This may include ensuring your wishes are upheld if you're not able to make decisions for yourself.

You may want to consider:

  • drawing up an advance decision - this makes your treatment preferences known in case you're unable to do this in the future
  • having a plan for where you want to receive treatment as your condition becomes more advanced
  • giving a relative lasting power of attorney - this is the power to make decisions about you if you're unable to

Read more about managing legal affairs for someone with dementia and end of life planning.

Help and advice for carers

If you care for someone with dementia, you may find it helpful to read more about:

Looking after someone with dementia

Respite care - this can allow you to take breaks from caring

Benefits for carers - such as allowances and tax credits that may be available