What is frontotemporal dementia? Symptoms, causes and treatment

Frontotemporal dementia (FTD) is an umbrella term for a group of dementias that mainly affect the frontal and temporal lobes of the brain, which are responsible for personality, behaviour, language and speech. Unlike other types of dementia, memory loss and concentration problems are less common in the early stages.

Frontotemporal dementia is a rare form of dementia affecting around one in 20 people with a dementia diagnosis.

On this page, our dementia specialist Admiral Nurses explain the symptoms and causes of frontotemporal dementia and possible treatment options.

How does frontotemporal dementia differ from other types of dementia?

Frontotemporal dementia usually develops between the ages of 45 and 65, whereas many other types are more common after the age of 65. In addition, frontotemporal dementia usually develops slowly, meaning that symptoms tend tol increase over a longer period of time.

Symptoms of frontotemporal dementia

A person with frontotemporal dementia might have a range of symptoms, including changes in behaviour, cognitive difficulties and communication challenges.

Behavioural

Behavioural symptoms can include:

• impulsivity
• acting inappropriately
• seeming unusually unsympathetic or appearing selfish
• overeating
• being less motivated
• struggling with personal hygiene

Cognitive symptoms

Cognitive symptoms can include:

• struggling with planning and organising
• getting distracted
• memory issues (although these usually come later with this type of dementia)

Communication symptoms

Communication symptoms can include:

• muddling words or using them in the wrong way
• speaking slower
• struggling to make the correct sounds when saying a word

Motor symptoms

Motor symptoms can include:

• movements being slower or stiffer
• muscle weakness
• difficulty swallowing
• issues with bladder and bowel control in the later stages

Causes and risk factors of frontotemporal dementia

Abnormal accumulation of tau and TDP-43 proteins

When someone has frontotemporal dementia, they have an abnormal build-up of protein forming in clumps inside brain cells, which is thought to damage the cells and stop them from working the way they should.

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

Genetic mutation

Frontotemporal dementia often has a genetic link, meaning those who develop it also have relatives impacted by it.

It may be possible, if there is a family history, to have a genetic test to see if you’re at risk; you can talk to your GP about being referred to a geneticist.

Other neurological conditions

It is possible for frontotemporal dementia to overlap with other neurological (nerve and brain) conditions, including:

• motor neurone disease: this causes increasing weakness, usually with muscle wasting
• corticobasal degeneration: this causes problems controlling limbs, loss of balance and coordination, slowness and reduced mobility
• progressive supranuclear palsy (PSP): this causes problems with balance, movement, eye movements and swallowing

Types of frontotemporal dementia

There are a number of different types of frontotemporal dementia.

Behavioural variant frontotemporal dementia

Behaviour variant frontotemporal dementia (bvFTD) is the most common type of frontotemporal dementia. A person with this type of dementia will experience symptoms that impact personality and mood.

Symptoms include:

• reduced motivation
• lack of interest in things the person used to enjoy
• inappropriate behaviour, eg making suggestive comments, staring, being over-familiar with people
• reduced empathy
• difficulty focusing on tasks
• obsessive or repetitive behaviour, eg repeating phrases or gestures, hoarding
• changes in behaviour regarding food or drink, eg craving sweet foods, poor table manners, overeating, drinking too much alcohol
• difficulty with planning, organising and decision-making
• lack of awareness of the changes in themselves (lack of insight)

Primary progressive aphasia

There are three types of primary progressive aphasia (PPA), which all tend to affect language rather than behaviour.

Semantic variant or semantic dementia (SD)

• difficulty remembering, finding or understanding words
• gradual loss of vocabulary
• forgetting what everyday objects are and what they do, eg kettle, toaster, keys

As SD progresses, the changes are likely to become similar to those experienced in bvFTD.

Nonfluent variant or progressive nonfluent aphasia (PNFA)

• difficulty using speech, including forming sentences and using grammar correctly
• difficulty conducting conversations – eg hesitation, using shortened sentences or using the wrong words

Logopenic variant or logopenic aphasia (LPA)

• difficulty finding words
• stopping speaking mid-sentence as the person searches for the right word

Unlike in SD, people with early LPA are unlikely to forget the meaning of words or what common objects do.

Progressive supranuclear palsy

Progressive supranuclear palsy (PSP) is a form of frontotemporal dementia. It affects around 4,000 people in the UK. It is caused by progressive damage to the cells in the brain that control eye movements.

PSP is characterised by difficulties with balance, movement, vision, speech and swallowing.

Because its initial symptoms can resemble other conditions such as Alzheimer’s disease or Parkinson’s, PSP can be difficult to diagnose.

For further information and support, visit the PSP Association website.

Corticobasal degeneration

Corticobasal degeneration (CBD) is a frontotemporal dementia. It is a rare condition where brain cells become damaged over time and certain sections of the brain start to shrink. It is a progressive condition. This means that the initial symptoms will become more severe over time, and new symptoms may also develop.

Initial symptoms of CBD include

• sudden difficulties in controlling certain limbs
• loss of balance and co-ordination

As the condition progresses, symptoms become more wide ranging and troublesome, such as

• muscle spasms and stiffness
• ongoing decline of mental functions (dementia)
• difficulties swallowing food and liquid
• difficulties speaking

The PSP Association can offer support and information on CBD.

Diagnosing frontotemporal dementia

Due to a lack of education and awareness, it can be more difficult to get a diagnosis of frontotemporal dementia than some other forms. Reasons for this can include:

• mistaking signs for other conditions such as depression, work stress and relationship problems
• the misconception that dementia only occurs in older people and usually involves memory problems
• the person’s reluctance to seek medical advice – this may be because they lack awareness of the changes in themselves, or are afraid of a dementia diagnosis

If you are concerned that someone may have frontotemporal dementia, it is important to encourage them to see their GP. If they are reluctant, you could contact the GP by phone, email or letter and outline your concerns – while the GP will not be able to breach the person’s confidentiality, they should consider the information and decide whether to call them in for an appointment or arrange a home visit.

If possible, go to the appointment with the person so you can share your views and concerns.

The GP should:

• take a full history including the person’s symptoms, when they started, how they affect the person’s life, and any family history of dementia
• carry out/arrange blood and urine tests and physical examinations to rule out other physical or mental health issues
• conduct a brief assessment of the person’s memory and cognitive skills, but this may be unreliable for people with frontotemporal dementia as memory
• problems are less common than in some other types of dementia

If the GP believes the person needs further investigations, they should be referred to a specialist in frontotemporal dementia for a comprehensive assessment of attention, memory, fluency, language, visuospatial abilities and behaviour changes. They may also have an MRI scan of the brain.

Treatment and management of frontotemporal dementia

While there is currently no cure for frontotemporal dementia, there are treatments and strategies that may help manage some of the symptoms.

Medicines

While medicines cannot stop the progression of frontotemporal dementia, there are some that can may help reduce symptoms such as a specific form of antidepressants called selective serotonin reuptake inhibitors (SSRIs), which can help with symptoms such as compulsive behaviour, a lack of inhibitions or overeating.

In rare cases, a person may be prescribed antipsychotic medication if SSRIs have not worked, as they may help control behaviour that is putting the person or others around them at risk. However, antipsychotic medications should always be used with caution for anyone living with dementia, so the person’s doctor should carefully weigh up the risks and benefits.

Care plans

The person’s current and future health and social care needs should be reviewed to create a care plan, to make sure they can access the right treatment and support. It can also identify areas where the person may need more assistance such as:

• support to remain as independent as possible
• changes to their home to make it more accessible
• any financial assistance

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