Frontotemporal dementia

What is it?

Frontotemporal dementia is an uncommon type of dementia.¹ Clumps of abnormal protein form inside brain cells and are thought to damage them.¹ This happens mainly in the front and side parts of the brain (the frontal and temporal lobes), which control behaviour, language, planning and organising.¹ It is also known as FTD or Pick's disease.¹

Most dementia starts after 65, but this type usually starts younger: most people find out between 45 and 65.¹ The cause is not fully known, but genes often play a part, and other family members may have had it.¹ If relatives have had it, your family doctor can refer you to a genetics specialist, and a genetic test may be possible.¹

The first signs

It usually starts with changes in behaviour or with language problems, and these come on slowly.² The person often does not notice the changes themselves.^2,1

• act on impulse, lose their social inhibitions or seem rude or cold;²
• lose interest in people and activities, and lose drive;²
• repeat the same actions, such as humming, tapping or walking the same route;²
• crave sweet foods, or eat, drink alcohol or smoke compulsively;²

Memory problems are not common at first.^2,1

How doctors find out

There is no single test.¹ The doctor can do simple checks and send you to a memory clinic or a specialist.¹ Tests may include tasks and questions about memory and thinking, blood tests to rule out other conditions, a brain scan (MRI, CT or PET), and sometimes a lumbar puncture to test the spinal fluid, which may help rule out Alzheimer's disease.¹

Current treatment

No treatment can slow it; antidepressants called SSRIs may ease loss of inhibitions, overeating and compulsive behaviour, alongside occupational, speech and physiotherapy.Source: NHS

Will it get worse?

It gets worse slowly over several years, and how fast is very hard to predict.¹ Most people end up with both behaviour and language problems.² Later on, some have slow, stiff movements, trouble swallowing, and loss of bladder or bowel control.^2,1 Help at home is usually needed at some stage, and some people need a nursing home.¹ People live on average around 8 to 10 years after the first signs, but this varies a lot, and some live much longer.¹

Medicines: what helps, and what to watch for

Medicines cannot stop it getting worse, but they may ease some symptoms in some people.³

Good to know:

• antidepressants called SSRIs may help with loss of inhibitions, overeating and compulsive behaviour;³
• antipsychotic medicines are rarely used, only when SSRIs have not worked and the behaviour puts the person or others at risk of harm.³

Exercise and therapy help too

• an occupational therapist finds practical ways round problems with daily tasks, such as dressing;³
• a speech and language therapist helps with talking and swallowing;³
• a physiotherapist helps with movement;³
• relaxation can help, for example massage, music therapy or dance therapy.³

For difficult behaviour, distraction, a fixed daily routine and activities such as puzzles or music can help.³

Is there a cure?

There is currently no cure.^1,3 No treatment can slow it today.¹ Research is looking for the causes so that treatments can be found.¹

Sources

1. NHS: Frontotemporal dementia – Overview
2. NHS: Frontotemporal dementia – Symptoms
3. NHS: Frontotemporal dementia – Treatment