Frontotemporal dementia

Around 12% of people under the age of 65 have frontotemporal dementia but it is less common in the over 65 age group. It most commonly occurs between the ages of 45-65.

What causes frontotemporal dementia?

Frontotemporal dementia is a group of conditions caused by the death of nerve cells and pathways in the frontal and temporal lobes of the brain. The damage to the brain is linked to abnormally forming proteins that interfere with communication between brain cells.

The main types of frontotemporal dementia are:

  • Behavioural variant frontotemporal dementia (also known as Pick’s)
  • Primary progressive aphasia which consists of semantic dementia and progressive non fluent aphasia

Other types include:

How does frontotemporal dementia develop?

Frontotemporal dementia is a progressive condition which affects behaviour and personality, which sometimes leads to disinhibition and inappropriate social behaviour. Eating patterns can also be affected, with people suddenly bingeing on food, especially sweet foods. This form of dementia can sometimes be confused with depression, stress, anxiety, psychosis or obsessive compulsive disorder.

In behavioural variant frontotemporal dementia initial symptoms may include:

  • changes in behaviour and personality
  • apathy
  • obsessive or repetitive behaviours
  • loss of empathy
  • changes in appetite and food eaten
  • difficulties with decision making, problem solving and concentration

Managing the effects of frontotemporal dementia

For the person with dementia:

  • Establish a routine and regular activities
  • Carry a card that lets people know you have dementia in an emergency situation. These can be ordered from our Admiral Nurse Dementia Helpline
  • Try to monitor your food and fluid intake as there can be weight gain due to excessive eating and a fixation with sweet, calorific foods
  • If you experience language difficulties, ask the GP for a Speech and Language Therapist referral so new ways of communicating can be explored

For the family carer:

  • Remember that the changes in personality, inappropriate social behavior and apathy are due to the condition and are not intentional
  • As the person affected may not have insight into the changes experienced, trying to ‘correct’ the person’s behaviour could be resisted and could lead to arguments
  • The family may need specialist advice and support to come to terms with and manage the changes experienced
  • A specialist practitioner such as an Admiral Nurse could also help the family develop strategies for dealing with the changes experienced

What is dementia

Dementia is an umbrella term used to describe a range of progressive neurological disorders, that is, conditions affecting the brain

Find out more

Types of dementia

Dementia is the broad term used to describe a number of different conditions affecting the brain. Find out more about the most common types of dementia

Find out more

Diana's story

Lester wasn’t quite 60 when he was diagnosed with frontotemporal dementia. Although Diana knew something was wrong for a while, she’d never imagined that it was dementia

Read Diana's story