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Introduction
 

Frontotemporal dementia

Frontotemporal dementia


 

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 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.

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.

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.

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.

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 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

Symptoms of frontotemporal dementia 

The symptoms of frontotemporal dementia usually develop gradually and get increasingly worse over a number of years.

The early symptoms can vary between different people with the condition, depending on which part of the brain is affected. Many people will initially have either behavioural or language problems.

As the condition progresses, most people experience problems in both of these areas, as well as additional physical problems and thinking difficulties. Eventually, the condition spreads to affect most brain functions.

These groups of symptoms are described below.

Behavioural and mood changes

In most cases, people with frontotemporal dementia display a number of unusual behaviours that they are not aware they have developed.

These can vary widely from person to person – for example, some may be uninterested and seem to have no drive, while others may be impulsive and more outgoing, with no inhibitions.

Typical signs are:

  • inappropriate behaviour in public

  • impulsivity

  • loss of inhibitions

  • overeating, a change in food preferences (such as suddenly liking sweet foods), poor table manners

  • neglect of personal hygiene

  • repetitive or obsessional behaviours, such as humming, hand-rubbing and foot-tapping, or complex routines such as walking exactly the same route repetitively 

  • seeming more selfish and unreasonable

  • inability to empathise with others, seeming cold and uncaring

  • irritability and aggression

  • being tactless or rude

  • being less or more outgoing than in the past

  • being lethargic, lacking enthusiasm

As the disease progresses, people with frontotemporal dementia may become socially isolated and withdrawn.

Language problems 

Many people with frontotemporal dementia experience problems with speech and language.

Symptoms can include:

  • using words incorrectly – for example, calling a sheep a dog

  • reduced vocabulary

  • repeating a limited number of phrases

  • more effortful or less articulate speech

  • automatically repeating things other people have said

  • reduced speech and conversation

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

Problems with thinking

Many people with frontotemporal dementia eventually lose the ability to think for themselves.

Symptoms can include:

  • 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

  • memory difficulties (although not common in the early stages)

Physical problems

In the later stages, many people with frontotemporal dementia may develop problems with movement. They may no longer initiate movements and may become rigid, similar to Parkinson's disease.

Some people may lose control of their bladder (urinary incontinence) and bowel (bowel incontinence).

In a few cases, frontotemporal dementia can occur with other neurological (nerve and brain) problems that cause additional physical symptoms, including:

  • motor neurone disease – which causes progressive weakness, usually with muscle wasting

  • corticobasal degeneration – which can cause problems controlling certain limbs, loss of balance and co-ordination, slowness and reduced mobility

  • progressive supranuclear palsy – which can cause problems with balance, movement, eye movements and swallowing

Seeking medical advice

If you think you may have early symptoms of dementia, it's a good idea to see your GP. If you're worried about someone else, encourage them to make an appointment and perhaps suggest that you go along with them.

Symptoms of dementia can have a number of different causes. Your GP can carry out some simple checks to try to find out what the cause may be, and they can refer you to a specialist for further tests if necessary.

Diagnosing frontotemporal dementia 

Confirming a diagnosis of dementia can be difficult, particularly when the condition is in its early stages. This is because many of the symptoms of dementia can be caused by other conditions.

For frontotemporal dementia to be diagnosed correctly, you will have a number of tests and assessments, including:

  • an assessment of your symptoms – for example, whether you have experienced any behavioural changes or problems with speech and language

  • a full assessment of your mental abilities

  • a physical examination

  • a review of the medication you are taking

  • a range of tests, including blood tests, to rule out other possible causes of your symptoms, such as a vitamin B12 deficiency

  • brain scans, such as a magnetic resonance imaging (MRI) scan, which can show the loss of brain cells in the frontal and temporal regions of the brain (behind the forehead and near the ears) 

Some of these tests can be carried out by your GP. Some will be carried out by specialists, such as a neurologist (an expert in treating conditions that affect the brain and nervous system), an elderly care physician, or a psychiatrist with experience in treating dementia.

Genetic testing

If frontotemporal dementia runs in your family, you may want to talk to your GP about being referred for a genetic test to find out if you carry one of the altered genes that causes the condition.

However, before having any tests, you should discuss the risks, benefits and limitations of genetic testing with a counsellor.

Managing frontotemporal dementia 

There is currently no cure for frontotemporal dementia, but treatment can help to manage some of the symptoms.

When you are diagnosed with dementia, your future health and social care needs will need to be assessed and a care plan drawn up.

This is to ensure you receive the right treatment for your needs. It involves identifying areas where you may need some assistance, such as:

  • what support you or your carer need for you to remain as independent as possible

  • 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

Medication

There is no medication specifically designed to treat frontotemporal dementia. Acetylcholinesterase inhibitors such as donepezil (Aricept), which are normally prescribed for Alzheimer's disease, are not effective.

However, there are medications that can help control some of the symptoms.

Antidepressants

There is evidence to suggest that a type of antidepressant calledselective serotonin reuptake inhibitors (SSRIs) may help to control the loss of inhibitions, overeating and compulsive behaviour seen in some people with frontotemporal dementia.

There is also some evidence suggesting that a type of antidepressant called trazodone may help to control behavioural problems.

Antipsychotics

Antipsychotics such as haloperidol are only really used for treating severely challenging behaviour that is putting you or others at risk of harm. 

This is because these medications can cause a range of serious side effects, including rigidity and immobility.

If antipsychotics are needed, they will be prescribed at the lowest possible dose and for the shortest possible time, and your health will be carefully monitored.

Supportive measures and treatments

There are also a number of treatments and techniques that can help make everyday living easier if you have dementia, or are caring for someone who does. 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 problems

  • physiotherapy to help with movement difficulties

  • psychological treatments, such as cognitive stimulation, to help improve memory, problem solving skills and language ability

  • relaxation therapies, such as aromatherapy, music or dance therapy, and massage

  • strategies for dealing with challenging behaviour, such as distraction techniques, having a structured daily routine, and encouraging activities to relieve boredom (such as doing puzzles or listening to music)

  • offering food only at mealtimes and in suitable portions to help prevent overeating

  • incontinence products

Legal matters

If you've been diagnosed with dementia, you'll need to make arrangements for your care that take into account the possible decline in your mental abilities. This should include ensuring that your wishes are upheld if you're not able to make decisions for yourself.

You may wish to draw up an advance decision after first receiving a diagnosis of dementia. This makes your treatment preferences known now, in case you are unable to do this in the future.

You may also want to consider giving a relative or someone else “lasting power of attorney”. This is the power to make decisions about you if you are unable to.

It's best to decide on these issues as early in the illness as possible, so that your competence to make decisions is not in question.