When we think about the early signs of dementia, memory loss is often the first thing that comes to mind.
Forgetting appointments.
Misplacing belongings.
Repeating the same questions.
But not every type of dementia begins that way.
In fact, some people experience significant changes in personality, behaviour or language long before memory problems become obvious.
And this is one reason frontotemporal dementia (FTD) can be particularly difficult to recognise.
When Dementia Doesn't Look Like Dementia
Frontotemporal dementia affects areas of the brain involved in behaviour, personality and language.
Unlike Alzheimer's disease, which is commonly associated with memory difficulties, FTD can initially appear in very different ways.
Someone might begin behaving in ways that seem completely out of character.
They may become less sensitive to other people's feelings, act impulsively or struggle with social situations.
Others may experience difficulties finding words, understanding language or communicating clearly.
Some forms can also involve changes in movement.
Because these symptoms don't necessarily resemble what families expect dementia to look like, the condition can initially be mistaken for something else.
Why Is FTD Sometimes Misdiagnosed?
Research suggests that around one in three people eventually diagnosed with FTD are initially diagnosed with a psychiatric condition, such as depression, anxiety or psychosis.
Others may initially receive a diagnosis of Alzheimer's disease or another neurological condition.
It's understandable why confusion can arise.
A sudden change in personality might initially seem like a mental health concern.
Problems with communication could be attributed to stress or another medical issue.
And because FTD often develops in people in their 50s or 60s, dementia might not be the first explanation anyone considers.
For families, this can mean a long and frustrating journey towards understanding what's happening.
Why Isn't There a Simple Test?
One of the challenges is that there currently isn't a single test that can definitively confirm FTD as the cause of someone's symptoms.
Doctors may use several types of assessment to build a clearer picture.
Brain scans can sometimes reveal shrinkage in the frontal and temporal regions.
Researchers are also investigating potential biomarkers that could eventually make diagnosis more accurate.
These include tests involving blood, saliva, spinal fluid, skin samples and brain imaging.
The hope is that these developments could help doctors distinguish FTD from other conditions earlier.
Does FTD Run in Families?
Genetics can sometimes play an important role.
Around 20% of FTD cases are linked to mutations in specific genes.
This means family history can provide useful information when doctors are investigating possible FTD.
However, it doesn't mean everyone diagnosed with the condition has inherited it or that their relatives will necessarily develop dementia.
For people considering genetic testing, genetic counselling is recommended because the results may have important implications for both the individual and their family.
What Should Families Look Out For?
The most important thing is to pay attention to persistent changes that don't have an obvious explanation.
These might include:
Significant personality changes
Unusual or increasingly impulsive behaviour
Difficulties with speech or understanding language
Changes in movement
Behaviour that seems increasingly out of character
These symptoms can have many causes and don't automatically mean someone has dementia.
But if you're concerned, particularly when the person is in their 50s or 60s, it can help to write down specific examples.
When did the changes begin?
How frequently are they happening?
Are they becoming more noticeable?
Is there any relevant family history?
Taking this information to a GP can help explain what you've been observing.
If symptoms persist without a clear explanation, it may be appropriate to ask whether a specialist dementia or neurological assessment is needed.
Why Earlier Diagnosis Matters
An accurate diagnosis can't undo the changes dementia has already caused.
But it can help families understand why someone is behaving differently.
It can also support planning, access to appropriate care and consideration of research studies or clinical trials.
For some families, simply having an explanation for years of confusing changes can make an enormous difference.
The key message is that dementia doesn't always begin with forgetting things.
Sometimes the earliest changes involve how someone behaves, communicates or interacts with the world.
Recognising that possibility could help more families get the answers and support they need.
