FRONTOTEMPORAL DEMENTIA
We take a look at this little-known and often misdiagnosed condition
When news broke in February that Hollywood star Bruce Willis had been diagnosed with frontotemporal dementia, it shone a light on a disease that many of us had never heard of. Also known as FTD or Pick’s disease, it’s a relatively uncommon but cruel disease that often strikes at a younger age than other forms of dementia.
While anyone can get FTD, Dementia Australia CEO Maree McCabe says it most often occurs in people aged between 40 and 65. “There are many myths about dementia in the community and one of them is that only older people get dementia,” she explains.
A major challenge with FTD is that it can often go undiagnosed for years. “The symptoms are different than you would find in, say, Alzheimer’s disease,” says McCabe. “Memory loss is not a feature of frontotemporal dementia. It affects behaviour, personality, language and movement.”
WHAT IS FTD?
FTD is a group of disorders that affect the frontal and/or temporal lobes of the brain. There are several kinds of FTD, which each have their own signs and symptoms.
The most common types are frontal variant FTD, which affects behaviour and personality, and primary progressive aphasia, which affects communication. In some cases, FTD may also cause difficulties with mobility.
Willis’ family have confirmed that the 68-year-old star is living with aphasia. McCabe says that people with this condition typically experience language difficulties with speech, reading or writing. “They might have difficulty expressing themselves or understanding what other people are saying,” she explains.
WHO DOES IT AFFECT?
FTD can affect anyone, but it’s more
common in people with a family history. It affects women and men equally, and is the most common form of dementia in people under the age of 60.
Because FTD shares a lot of symptoms with other conditions, it’s often misdiagnosed as something else, such as anxiety or depression.
McCabe says that younger people also face additional obstacles when it comes to receiving the correct diagnosis. “A mammoth challenge is that health professionals don’t typically look at dementia in somebody younger,” she explains. “We know that for people over the age of 65 it can take up to three years to get a diagnosis, but for those under the age of 65, it can take up to seven years.”
FINDING SUPPORT
If you have any concerns that you or somebody close to you might have FTD, McCabe says it’s essential to seek professional advice.
“Any concern about any cognitive change should be investigated,” she advises. For advice on how to go about this, she recommends calling the National Dementia Helpline, which is available 24 hours a day. “We have counselling for people living with dementia, as well as their families and carers,” she says.
Along with counselling and guidance, the helpline can put people in touch with various services, such as education programs, community groups and government support. Their counsellors can discuss new challenges as they occur, and provide advice for handling difficult conversations, such as discussing dementia with younger family members.
As many of us worry about brain fog from time to time, another great resource is the BrainTrack app. This easy-to-use tool features games and activities that measure your cognitive skills, and can help to track any changes that might take place.
While diagnosis can be scary, McCabe says having the right education and help can make a huge difference. “With support in place, people can live well with frontotemporal dementia,” she assures.
FOR MORE SUPPORT
Call the National Dementia Helpline on 1800 100 500 or visit the Dementia Australia website at dementia.org.au