Frontotemporal dementia | Causes and symptoms

An introductory guide to the causes and symptoms of frontotemporal dementia.

What is frontotemporal dementia?

Frontotemporal dementia (FTD) is an umbrella term for several different types of dementia, all of which occur in the frontal lobe or temporal lobe in the brain. It is an uncommon type of dementia that typically occurs in people under 65 years old, and it can be hereditary.

The frontal lobe is a large part of your brain behind your forehead. Known as the ‘action cortex’, it controls movement, speech, how we express emotion and sexual behaviours.
The temporal lobes are also large and make the bottom part of the brain, with one on each side, behind the frontal lobe. The temporal lobe manages memory and how you interpret information from your senses, such as recognising what you see and understanding language that you hear.

Types of dementia that fall under the frontotemporal dementia category are:

• Behavioural variant frontotemporal dementia (bvFTD)
• Primary progressive aphasia (PPA)
• Corticobasal syndrome (CBS)
• Progressive supranuclear palsy (PSP)
• Frontotemporal dementia with Parkinson’s disease
• Frontotemporal dementia with motor neurone disease

What causes frontotemporal dementia?

FTD occurs when brain cells in the frontal or temporal lobes die. These cells usually die because of the build-up of abnormal proteins. When the cells die, the brain cannot function normally. As more cells die, the brain can shrink.

FTD is a progressive illness, meaning it will get worse over time. Because different areas of the brain are affected, this progression can occur unpredictably. The temporal lobes may deteriorate at a faster rate than the frontal lobe, for example, so the person might slowly lose the ability to speak but will still behave fairly normally.

Eventually, frontotemporal dementia can be fatal. The life expectancy for someone with the condition can vary widely, but the average is around 7 years from when they first start experiencing symptoms.

Signs and symptoms of frontotemporal dementia

Symptoms of frontotemporal dementia include:

• Changes in personality. The person may become quiet and withdrawn, or even unusually cheerful and outgoing
• Emotional changes, such as seeming cold and distant
• Difficulty understanding what is considered appropriate behaviour, or seemingly having ‘no filter’
• Change in language, such as words coming out in the wrong order
• Becoming easily distracted or confused, they may feel easily overwhelmed when trying to process information from their senses
• Difficulty with movement
• Repetitive behaviour, such as obsessive cleaning, collecting or exercising.
• Not looking after themselves
• Binge eating. The person will recognise that they are full but not stop eating, because their brain doesn’t tell them to.

Behavioural variant frontotemporal dementia (bvFTD)

Behavioural variant frontotemporal dementia is the most common type of FTD. The changes a person experiences are primarily behavioural. 

A person with bvFTD typically loses their inhibitions and ability to judge how to behave in certain social situations. They can also become indifferent to other people’s feelings. They can begin repetitive behaviours and consume large amounts of food, water, alcohol or tobacco.

Wendy Burton, whose husband Ian began showing symptoms of bvFTD at the age of 50, says: “He’d always been fairly quiet and he became very extroverted and went out drinking. He would spend nearly all day coming in and out and walking. We couldn’t keep him indoors. He was in and out of other people’s houses and the whole experience was very stressful.”

Read Wendy and Ian’s story.

Is there a treatment for frontotemporal dementia?

There is no cure for FTD and unfortunately, medications that help with Alzheimer’s disease is not effective for this illness. The only treatments or medications known to help ease symptoms of FTD are:

• Speech therapy can help people annunciate more clearly, teach them methods to remember the words they are looking for or to find other ways of communicating.
• Some types of antidepressants or antipsychotics can ease symptoms, such as repetitive actions or inappropriate behaviours.

Helplines

If you or a loved one is living with frontotemporal dementia, there are organisations who can support you.

The Frontotemporal Dementia Support Group	07592  540 555
National Dementia Helpline	0300 222 1122
Dementia UK Helpline	0800 888 6678