A test to diagnose an early onset dementia has been developed by UNSW researchers. The test will relieve patients and their families of the trauma and guesswork of misdiagnosis and make sure they get access to the right resources.
Frontotemporal dementia (FTD) is the second most common form of dementia in younger people*, yet it is commonly misdiagnosed, the National Dementia Research Forum has been told. It may also be much more common in those who are 65 and over than is currently believed. Sydney is estimated to have at least 1,000 people with FTD - many of whom do not know they have the condition.
"These patients have typically had the condition for three to five years and they have seen a number of specialists before they come to us," said Professor of Cognitive Neurology John Hodges, who is based at the Prince of Wales Medical Research Institute. Professor Hodges took up his position last year having been Professor of Neurology at Cambridge University for the past 17 years.
Professor Hodges has developed the first research program dedicated to FTD in the Southern Hemisphere.
"This type of dementia can affect people in two ways - either through changes in personality and social behaviour or through loss of vocabulary.
"Behavioural changes include apathy, which is sometimes diagnosed as depression, loss of empathy and disinhibition," he said. "Those with loss of vocabulary and memory for words might be labelled as having Alzheimer's disease."
There is also a personality disorder which mimics FTD and makes diagnosis difficult.
"It is essential that people are diagnosed correctly for a number of reasons," said Professor Hodges. "While there is no cure for FTD, there are drugs which can alleviate some of the behaviours, such as disinhibition and overeating."
There are also a number of gene mutations that can result in FTD which have been discovered in the last few years. Professor Hodges and his team want to screen for gene abnormalities if there is a strong family history of dementia.
The 15-minute test involves tasks such as generating words starting with a certain letter of the alphabet and naming animals. It requires little training and is freely available.
"We can also help support the families who care for people with FTD," he said. "This disorder is particularly traumatic for families because they are left caring for someone who is robbed of their original personality. In many cases, the patients can't recognise emotions in others."
Last year, Professor Hodges' team established the first support group in Australia for people caring for patients with FTD.
"There is very little awareness about FTD and it's very difficult to diagnose without sophisticated brain imaging," said Professor Hodges. "We hope this test will be used by professionals working in memory clinics, neurologists, geriatricians and psychiatrists."
For more information on the Frontotemporal Dementia Research Group (FRONTIER), go to the website
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*Those who are under 65 years of age.