Frontotemporal dementia

  • In people under the age of 65, frontotemporal dementia is the second most commonly diagnosed dementia but it is less common in the over 65 age group.
  • 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

What causes frontotemporal dementia?

  • Frontotemporal dementia represents a group of conditions caused when nerve cells in the brain die and the nerve pathways are damaged 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.

What happens?

Behavioural variant frontotemporal dementia:

  • The 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.

Primary progressive aphasia which consists of: semantic dementia and progressive non fluent aphasia:

  • The initial symptoms may include: language difficulties; speech; grammar problems; reduced comprehension; loss of understanding of familiar words; difficulty recognising people or objects.

Possible risk factors

  • Age: people diagnosed with frontotemporal dementia tend to be under the age of 65.
  • Gender: affects both men and women.
  • Genetics: in about a third of people frontotemporal dementia maybe genetic.

Preventing frontotemporal dementia

Frontotemporal dementia research is still in its infancy. At this point in time we haven’t identified anything that can prevent frontotemporal dementia as the risk factors are inherently unavoidable. It’s not fully understood why abnormal proteins build up, but there is often a genetic link.

How can the effects of frontotemporal dementia be managed?

For the person with dementia

  • Establish a routine and regular activities.
  • Carry a card the lets people know you have dementia in an emergency situation. These can be ordered from our Admiral Nursing Direct 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.

Planning ahead if you have received a diagnosis   

  • Talk to your family and the people close to you about the future. Think about what help you would like. 
  • You may also like to think about things you would really like to do, people you would like to meet, holidays you would like to plan. Having some plans in place helps with a positive outlook on the future and opens up conversations with people who care about you and would like to support you.
  • Thinking about your future health needs can be difficult and feel like an unnecessary step but it will help you and the people who know you well to choose treatments and services that you would prefer in the future. You can put a Health and Welfare Power of Attorney in place and an Advance Care Plan. Putting these things in place will give you and your family time to look at treatments and support that is available and make sure you are aware of all the choices that are available to you for the future.
  • Gaining some financial advice as soon as you can will help you get your finances in order and make sure your finances are protected. A Lasting Power of Attorney is an important safeguard for you and anybody who is helping you with your finances. It is best to get support from a solicitor or an organisation like Age UK to help you with this. 
  • Financial support is available to you regardless of you financial status. You can claim for Attendance Allowance (which is non-means tested) if you are over 65 years or Personal Independence Payment if you are under 65 years. If you live with another person you can also claim a 25% council tax reduction from your local authority. 
  • There are a variety of housing options to choose from. If you are renting you can get support from you local authority housing department. There are also choices of housing in the assisted living and sheltered housing options.

Support

If you suspect you have frontotemporal dementia, make an appointment with a GP so they can ask you questions about your concerns, and perform a physical examination to rule out any other potentially treatable conditions that could give similar symptoms e.g. infections, side effects of medication.

If your GP suspects frontotemporal dementia they will make a referral to a memory clinic or other specialist clinic for further tests and diagnosis.

Contact our Admiral Nursing Direct helpline for support and advice: 0800 888 6678.

Research

Over the last couple of years more money has been pledged by the UK government and other countries world wide to research into the causes and find a cure for dementia. Subject to research processes and certain criteria, there are opportunities to be part of a research studies. To find out more or register your interest, see: Join Dementia Research

Page to be reviewed on 01/04/2017