About frontotemporal dementia
FTD is a group of dementias which affect the frontal and temporal lobes. Affecting personality, behaviour, language and mobility. Age of onset is most commonly 45 to 65.
What FTD is
Frontotemporal dementia is an umbrella term for a group of brain disorders which cause damage to the frontal and temporal lobes of the brain. These areas are responsible for things such as personality, behaviour, language, decision making and emotional responses. Unlike many other forms of dementia, FTD often affects these abilities long before memory is affected.
An FTD diagnosis brings with it enormous emotional, practical and financial strain to the family. There is currently no cure for FTD, and there are no treatments that can stop the underlying disease from progressing.
FTD in numbers
the age range in which FTD usually develops
people with a dementia diagnosis have FTD
average time to diagnosis for people under 65
of cases have a family history of the condition
Figures from Dementia UK. Around 12% of people with young onset dementia have FTD, compared with about 2% of people diagnosed over 65.
The main types
FTD is not one condition. Which type someone has changes what daily life looks like – and what kind of help is useful. Someone may also have a combination of multiple types.
Behavioural variant (bvFTD)
The most common type. Affects personality and mood: reduced motivation and empathy, impulsive or inappropriate behaviour, obsessive or repetitive habits, changes around food and drink, and difficulty planning or making decisions. Often the person has little awareness that they have changed.
Primary progressive aphasia (PPA)
Affects language rather than behaviour. In semantic dementia vocabulary and the meaning of everyday objects gradually goes. In the non-fluent variant, forming sentences and speech production become increasingly difficult. With the logopenic variant a person may pause mid sentence, struggling to retrieve words. Again, any combination of these variants can be experienced simultaniously.
Progressive supranuclear palsy (PSP)
PSP primarily affects movement, balance and eye control but it can also lead to speech and language difficulties.
Corticobasal degeneration (CBD)
CBD causes asymmetric movement problems, like one limb becoming stiff or clumsy. It also affects language and cognition, often leading to a decline in daily functioning.
The things people outside your home rarely see
Caring for someone with early onset FTD is not simply caring for someone with dementia at a younger age. Several things stack up at once.
- You are probably still working. — And may have a mortgage, children at home and parents who need you too.
- Anosognosia – lack of insight is a common symptom, a blessing at some stages making the person seem more at ease despite their challenges. Over time, it often complicates every decision, making it incredibly distressing for both them and their loved ones.
- Behaviour is misread by strangers. — In shops, at work, among friends, what people see is rudeness rather than illness.
- Services are built for older people. — A day centre aimed at eighty-year-olds rarely suits someone of fifty-two.
- FTD is often difficult to diagnose in its early stages and can be mistaken for other conditions. Families face uncertainty, repeated investigations and assessments, which can be extremely distressing for all involved.
- It may be inherited. — In around 40% of cases there is a family history, which raises questions for children in the house.
Where else to get support
We give grants. We are not a helpline or a clinical service. These organisations do things we cannot, and we recommend them warmly.
Dementia UK
Admiral Nurses give specialist dementia advice by phone, video or email. Their free Dementia Helpline is 0800 888 6678.
Rare Dementia Support
Specialist support groups for rarer dementias, including dedicated FTD and PPA groups, run by UCL.
PSP Association
Information and support specifically for progressive supranuclear palsy and corticobasal degeneration.
tide — together in dementia everyday
Online support groups for carers, including a group specifically for people caring for someone with young onset dementia.
Young Dementia Network
A network of people with young onset dementia, their families and professionals, with useful resources including young onset ID cards.
Dementia Carers Count
Free courses for family and friends with caring responsibilities, designed around what carers actually need to know.
If you need help today
We are a small volunteer trust and cannot offer urgent or clinical support. If you are in crisis, please call the Dementia UK helpline on 0800 888 6678, contact your GP, or call 111. In an emergency call 999.
Every grant starts with a donation
We are a small, volunteer-run trust. A gift of any size goes directly to a family caring for someone with early onset FTD at home.