Frontotemporal dementia

Also called FTD, Pick's disease, Behavioural variant FTD

Dementia that takes personality and language before memory. The commonest dementia in people under 60.

What it is

Frontotemporal dementia damages the frontal and temporal lobes: the parts governing personality, judgement, empathy and language. Memory, which is what everybody screens for, is often relatively preserved early on.

It is the commonest form of dementia in people under 60, and the average age of onset is around 58.

That combination causes the longest diagnostic delays of any dementia. A person in their fifties whose personality changes, who becomes tactless, apathetic or reckless, gets assessed for depression, for a midlife crisis, or for marital problems. Memory tests come back normal, which is taken as reassurance.

There are two broad forms: behavioural variant, and primary progressive aphasia, where language goes first.

Signs you might notice

Loss of empathy and social awareness. Rudeness, tactlessness, saying the unsayable.

Apathy so profound it looks like depression but does not respond to encouragement.

Disinhibition: spending, sexual behaviour, risk-taking, shoplifting.

Rigid routines, and a new sweet tooth or overeating, which is a surprisingly characteristic feature.

In the language form: word-finding difficulty, speech becoming effortful, or losing the meaning of words.

Memory and spatial skills relatively intact early, which is what misleads everybody.

How it can affect day-to-day life

The relationship damage happens before the diagnosis and is rarely repaired. Partners describe years of believing they were being deliberately hurt.

Financial and legal harm is common: money spent, contracts signed, sometimes offences committed, all before anybody knows there is a disease.

Around a third of cases are inherited, so genetic counselling matters for the family in a way it does not in most dementias.

Services designed for older people are a poor fit for a 56-year-old with children at home.

Supporting someone well

Reframe behaviour as symptom, explicitly and repeatedly. It does not stop the behaviour and it changes how everybody around it copes.

Protect money early: joint control, spending limits, and lasting power of attorney while capacity allows. Read mental capacity.

Use routine and structure rather than reasoning. Insight is usually absent, so explaining why does not work.

Avoid confrontation and use distraction.

Ask for young onset dementia services rather than generic ones. See young onset dementia.

Get genetic counselling where there is a family history.

Fiducia Guardian holds consents, decisions, documents and who holds authority for what, which in a condition that damages judgement while leaving memory intact is exactly the protection a family needs.

Where to get help

Ask for referral to a neurologist or a cognitive disorders clinic, not just a memory service, and describe the personality and language changes rather than testing memory.

Rare Dementia Support run specialist groups for FTD and for primary progressive aphasia.

Dementia UK's Admiral Nurses support families directly.