When most people think of dementia, they picture memory loss in someone in their 80s. Frontotemporal dementia breaks both of those assumptions. It often begins between the ages of 45 and 65, and in its early stages it may not affect memory at all. Instead, families notice something harder to name: a change in personality, in judgement, in warmth, in the person they know and love.
If you have found this page because a doctor has mentioned frontotemporal dementia, or because you have been searching for answers about changes in someone you love, we want you to know two things. What you are noticing is real. There is support available, whenever you are ready for it.
What is frontotemporal dementia?
Frontotemporal dementia (often shortened to FTD) is an umbrella term for a group of dementias caused by progressive damage to the frontal and temporal lobes of the brain. You may also hear it called frontal lobe dementia. Older names for the same group of conditions include Pick’s disease.
The frontal lobes sit behind the forehead and act as the brain’s management centre. They govern personality, behaviour, planning, judgement, empathy and self-control. The temporal lobes, at the sides of the brain, are central to language and to recognising people, objects and emotions.
Because these regions are affected first, the early signs of frontotemporal dementia look very different from the memory-led changes most people associate with dementia. A person may remember appointments and recognise family perfectly well, yet behave in ways that seem out of character, lose interest in people they love, or struggle to find words.
FTD is one of the most common causes of dementia in people under 65, which is why it features so often in conversations about younger onset dementia. Onset is typically between 45 and 65, although it can occur earlier or later.
How is frontotemporal dementia different from Alzheimer’s disease?
The two conditions are often confused, frontotemporal dementia is frequently misdiagnosed at first as depression, a midlife crisis, a relationship breakdown or a mental health condition. The key differences in the early stages:
- What changes first. Alzheimer’s usually begins with short-term memory loss. FTD usually begins with changes in behaviour, personality or language, while memory stays relatively intact.
- Age. Alzheimer’s is most common over 65. FTD commonly appears in a person’s 50s or early 60s, sometimes their 40s.
- Insight. People living with behavioural-variant FTD often have limited awareness that anything has changed, which can be one of the most painful aspects for families.
- Emotional connection. A loss of empathy or warmth towards loved ones is a hallmark early sign of FTD, it is often what families find most distressing, because it can feel personal long before anyone realises it is neurological.
The types of frontotemporal dementia
Frontotemporal dementia is not one disease but a group of related conditions. Clinicians generally group them by what is affected first.
Behavioural-variant FTD (bvFTD)
The most common form. Changes begin in the frontal lobes, so the earliest changes are in personality and conduct. Families often describe:
- Loss of empathy, warmth or interest in family and friends
- Socially inappropriate comments or actions, or a loss of tact and manners- Impulsive decisions with money, food, driving or relationships
- Apathy and loss of motivation that can be mistaken for depression
- Repetitive behaviours, rigid routines or new obsessions
- Changes in eating habits, often a strong new preference for sweet foods
Primary progressive aphasia (PPA)
When the temporal lobes are affected first, the earliest changes are in language rather than behaviour. There are two main patterns:
- Semantic dementia. The meaning of words gradually erodes. A person may speak fluently but struggle to name familiar objects or people, or ask what common words mean.
- Progressive non-fluent aphasia. Speech itself becomes effortful. The person knows what they want to say but producing the words becomes slow and halting, sentences shorten over time.
In the early stages of PPA, memory, personality and day-to-day functioning are often largely preserved, which can make the diagnosis confusing for families who expect dementia to look like forgetfulness.
Early signs families often notice first
Every person’s experience is different, but these are the patterns families describe most often, sometimes years before a diagnosis:
- “They just weren’t themselves.” A gradual shift in personality with no obvious trigger.
- Withdrawal from family life, hobbies or work that once mattered deeply.
- Comments or behaviour in public that would once have embarrassed them.
- Difficulty finding words, or using the wrong words for everyday things.
- Poor financial or professional judgement in someone previously careful.
- A flatness or coldness in relationships that feels unfamiliar.
If several of these feel familiar, a conversation with a GP is a reasonable next step. Ask directly whether frontotemporal dementia could explain what you are seeing, because it is not always the first condition doctors consider in a younger person.
What causes frontotemporal dementia?
FTD is caused by the progressive build-up of abnormal proteins in the frontal and temporal lobes, which changes how brain cells function over time. Why this happens is not fully understood, but genetics plays a larger role in FTD than in most other dementias. A meaningful proportion of people with FTD have a family history of dementia or related conditions. A smaller group carry a specific inherited gene change.
If FTD runs in your family, a referral to a genetics service can help you understand your own situation; this is a personal choice, and genetic counselling exists precisely to support it. For most people, though, FTD occurs with no clear family link, and nothing you or your loved one did caused it.
How frontotemporal dementia is diagnosed
There is no single test for FTD. Diagnosis usually involves a GP referral to a neurologist, geriatrician or psychiatrist, followed by some combination of cognitive assessment, detailed
history from family (which is often the most valuable evidence), brain imaging such as MRI, and tests to rule out other causes.
Because early FTD can mimic depression, anxiety or burnout, it is common for the path to diagnosis to take time. Persisting matters. An accurate diagnosis opens the door to the right support, the right planning and for people under 65, the right funding.
How the condition progresses
Frontotemporal dementia is progressive and over time the different forms tend to converge. A person who began with language changes will usually develop behavioural changes over time. The reverse is also true. In later stages, people typically need support with most of everyday living. Some also experience changes in movement.
Progression varies greatly from person to person and can span many years. This is important: a diagnosis is not the end of a meaningful life. It is the beginning of a different chapter. How that chapter feels depends enormously on the environment and support around the perso
Treatment and management
There is currently no cure for frontotemporal dementia and no medication that slows it. But this does not mean nothing can be done. Changes can be managed and quality of life can be actively supported:
- Environment matters enormously. Familiar, calm, home-like settings reduce distress and confusion. Large, institutional environments tend to amplify changes in behaviour.
- Routine and meaning. Days built around what the person can still do and loves to do, reduce agitation and support wellbeing far better than schedules built around what they can no longer do.
- Speech pathology can help people with PPA maintain communication for longer and equip families with strategies.
- Behaviour support from teams experienced in dementia, including trauma-informed approaches, can identify what a change in behaviour is communicating, whether an unmet need, pain or something in the environment, then respond respectfully.
- Support for the family is treatment too. FTD is widely described as one of the hardest dementias for families, precisely because it changes relationships. Nobody should carry that alone.
Supporting someone living with FTD
A few principles that families and care teams find make the biggest difference:
- See the disease, not defiance. Behaviour that seems selfish or rude is caused by the condition, not a choice.
- Meet them where they are. Arguing or correcting rarely helps. Stepping into their reality and gently redirecting, usually does.
- Protect your own reserves. Carers of people with FTD are at high risk of exhaustion, partly because the condition is so misunderstood by others. Respite is not giving up. It is how you keep going.
- Find people who understand. Dementia education workshops and carer groups reduce the isolation that FTD families so often describe.
When care at home is no longer enough
Because FTD often affects younger people, families frequently care at home for a long time, alongside careers and children. There may come a point where the level of support needed is more than any one household can provide, particularly where behaviour changes are complex.
At Videri Australia, we support people living with frontotemporal dementia in small, real homes of up to 10 residents, nestled in Sydney neighbourhoods, with trained Homemakers onsite 24/7 and a multidisciplinary team experienced in behaviour support and trauma-informed practice. Smaller, familiar environments are especially suited to FTD, where large and busy settings can heighten distress.
Many families start with a short flexible respite stay, which offers a genuine break and a gentle way to see whether the environment fits. When you are ready, we are here. Call us on 1300 015 406 or send a care enquiry.
Frequently asked questions
Is frontal lobe dementia the same as frontotemporal dementia?
Yes. Frontal lobe dementia is a common name for frontotemporal dementia, reflecting the areas of the brain affected. Doctors may also use FTD and older terms include Pick’s disease.
At what age does frontotemporal dementia start?
How is frontotemporal dementia different from Alzheimer's?
What support is available for someone with frontotemporal dementia in Sydney?
Videri Australia provides dementia-specific care in small, real homes across Sydney, supporting people living with frontotemporal dementia, Alzheimer’s disease and other conditions. Wherever you are in your journey, we are here for you.
