Frontotemporal dementia: symptoms, causes and treatment

The NHS lists four broad groups of early signs. Memory is not usually the first thing to change.

The Alzheimer’s Society describes two types. Behavioural variant FTD is the most common; damage to the frontal lobes mainly causes problems with behaviour and personality, and it can affect mood and the ability to think things through. Primary progressive aphasia (PPA) is when damage to the temporal lobes initially causes difficulties with language.

It lists semantic variant PPA, where a person forgets the meaning of words, and non-fluent variant PPA, where speaking becomes slow, effortful and error-prone. Doctors use several other names, including Pick’s disease and frontotemporal lobar degeneration.

The Alzheimer’s Society adds that most people with behavioural variant FTD are not fully aware of their symptoms, and the changes are often first noticed by those closest to them, which can cause long delays to diagnosis.

Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain. Frontotemporal dementia affects the front and sides of the brain, the frontal and temporal lobes. These areas control language, behaviour and the ability to plan and organise.

Like other dementias it tends to develop slowly and get gradually worse over several years, and is progressive. How quickly it worsens varies from person to person and is very difficult to predict, according to the NHS.

The NHS says it is caused by clumps of abnormal protein forming inside brain cells, which are thought to damage the cells and stop them working properly. The proteins mainly build up in the frontal and temporal lobes.

It is not fully understood why this happens, but there is often a genetic link, and people who get FTD may have relatives who were also affected. If you have a family history you may want to talk to your doctor about referral to a geneticist and possibly genetic testing.

There is no single test. The NHS says the following may be needed, and that it is helpful to have someone who knows the person well describe their symptoms, because they may not be aware of changes in their behaviour.

• An assessment of symptoms.

• An assessment of mental abilities, usually tasks and questions.

• Blood tests, to rule out conditions with similar symptoms.

• Brain scans such as MRI, CT or PET.

• A lumbar puncture, which may help rule out Alzheimer’s disease.

The NHS says there is currently no cure for FTD and no treatment that will slow it down, but there are treatments that can help control some symptoms, possibly for several years.

• Medicines to control some of the behavioural problems.

• Physiotherapy, occupational therapy and speech and language therapy for movement, everyday tasks and communication.

• Dementia activities such as memory cafes.

• Support groups for tips on managing symptoms and for families.

The NHS says people with the condition can become socially isolated as it progresses, 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 8 to 10 years, though this is highly variable and some people live much longer.

The NHS stresses that you are not alone: social services, voluntary organisations and specialist groups such as Rare Dementia Support can provide advice for you and your family, and you can register an interest in research through Join Dementia Research.

See a GP if you think you have early symptoms of dementia. If you are worried about someone else, encourage them to make an appointment and perhaps go with them. The GP can do simple checks to find the cause and can refer to a memory clinic or another specialist for further tests.

On the NHS, diagnosis is usually through a memory clinic or neurology, with scans and therapy services arranged through the same pathway. Private neurologists and memory clinics offer assessment and scans; ask what is included and ensure results are shared with the GP so care and support are joined up.