What is frontotemporal dementia?
Frontotemporal dementia (FTD) is caused by damage to the frontal lobes and temporal lobes of the brain. These are the areas at the front and sides of the head.
- The frontal lobes help with planning, self-control, social behaviour and motivation.
- The temporal lobes help with language and understanding the meaning of words.
Because of this, FTD usually causes changes in behaviour or language first. The NHS notes that memory problems tend to come later, which is different from Alzheimer’s disease.
The NHS describes FTD as uncommon. Most people are diagnosed between the ages of 45 and 65, although it can affect younger and older people. You may also hear the older name Pick’s disease.
Dementia UK says about 12% of people with young-onset dementia have FTD, compared with about 2% of older people with dementia.
Types of FTD
Alzheimer’s Society describes two main groups.
| Type | Main early changes |
|---|---|
| Behavioural variant FTD | Changes in personality, behaviour and social conduct. This is the most common type |
| Semantic variant primary progressive aphasia | Losing the meaning of words, and trouble naming or recognising objects and people |
| Non-fluent variant primary progressive aphasia | Speech becomes slow, effortful and hesitant, with grammar mistakes |
“Primary progressive aphasia” (PPA) means a condition where language gets worse over time. There is a third form, logopenic aphasia, but Alzheimer’s Society notes this is usually caused by Alzheimer’s disease rather than FTD.
Symptoms
Behaviour and personality
People with behavioural variant FTD may:
- act impulsively or say things that seem rude or out of character
- lose interest in people and activities
- seem less caring or less aware of other people’s feelings
- neglect personal hygiene
- repeat the same actions or phrases, or develop fixed routines
- change what they eat, such as craving sweet foods or overeating
- make poor decisions, including with money
- have trouble planning and organising
Alzheimer’s Society notes that most people with behavioural variant FTD are not fully aware of their symptoms. This can be very hard for families, who may notice changes long before the person does.
Language
People with the language types may:
- speak slowly or with effort
- struggle to find words or use the wrong word
- lose understanding of what familiar words mean
- have trouble following conversation
- eventually lose the ability to speak
Later symptoms
Over time, symptoms of the different types tend to overlap. Memory problems can develop. The NHS says some people develop movement problems or difficulty swallowing.
Alzheimer’s Society says about 1 or 2 in every 10 people with FTD also develop a condition affecting movement, such as motor neurone disease (MND), corticobasal syndrome or progressive supranuclear palsy.
Causes and genetics
In FTD, abnormal proteins build up in brain cells in the frontal and temporal lobes. This damages the cells.
The NHS says there is often a genetic link. Some people have family members who also had FTD, MND or a similar condition. If there is a family history, the NHS advises talking to a doctor about genetic counselling and testing. Genetic testing is a big decision, so specialist counselling before and after is important.
Diagnosis
There is no single test for FTD. The NHS says diagnosis may involve:
- a detailed history, ideally with someone who knows the person well
- memory, thinking and language tests
- blood tests to rule out other causes
- brain scans, such as MRI, CT or PET
NICE advises specialists to consider FDG-PET or perfusion SPECT scans if the diagnosis is uncertain. NICE also says FTD should not be diagnosed or ruled out based on scans alone.
Standard memory tests can miss FTD, especially early on, because memory may still be good. A referral to a specialist memory service or neurology service is often needed. See getting a diagnosis.
Treatment
There is no cure for FTD and no treatment that slows it down. The NHS says treatment focuses on managing symptoms and supporting daily life.
- Medicines for Alzheimer’s disease: NICE says acetylcholinesterase inhibitors and memantine should not be offered for FTD, as they do not help.
- Medicines for behaviour: doctors may sometimes suggest medicines to help with some behaviour changes. These are decided case by case, and the risks and benefits should be discussed.
- Speech and language therapy: can help people keep communicating for longer, for example with picture boards or apps.
- Occupational therapy and physiotherapy: can help with daily tasks and movement.
- Support groups: the NHS highlights support for people with FTD and their families.
See treatment for more about managing changes in behaviour without medicines first.
Caring for someone with FTD
FTD can be especially hard on relationships. A partner may feel they are losing the person they knew, even while that person is still physically well.
Things that may help:
- Understand it is the illness: rude or impulsive behaviour is a symptom, not a choice.
- Keep routines: predictable days can reduce distress.
- Protect money: consider limits on bank cards and make a Lasting Power of Attorney early. See legal and money matters.
- Plan for driving and work: see living well and young-onset dementia.
- Look after yourself: see carers’ wellbeing.
For advice from specialist dementia nurses, see support and helplines.