A Queensland-first study by Mater researchers is aiming to change the lives of Australians crippled by an incurable form of dementia.
Conjoint Professor of Cognitive Neurology at Mater Hospital Brisbane and The University of Queensland, Professor Peter Nestor, is researching frontotemporal dementia (FTD), helping people who have suspected degenerative brain diseases and young-onset dementia find answers.
Shining a spotlight during World FTD Awareness Week (24 September to 1 October), Prof Nestor is the state’s only Cognitive Neurologist, and sees more than 200 patients each year at the Memory Clinic at Mater Hospital Brisbane – the only one of its kind in Queensland.
FTD is the result of damage to neurons in the frontal and temporal lobes of the brain and is the most common form of dementia among those under 60.
Many possible symptoms can result, including unusual behaviours, emotional problems, trouble communicating leading to difficulty with work or home life. Occasionally they can develop balance problems or motor weakness.
Prof Nestor’s program, run through Mater Research and the Queensland Brain Institute, focuses on patients with FTD who are experiencing a decline in brain function, the major symptom of dementia.
The multidisciplinary tertiary referral clinic focuses on atypical and young-onset dementias which can be diagnostically challenging.
“One of the key goals of the research is to develop methods that improve the accuracy of diagnosis for people with suspected dementia,” Prof Nestor said.
“Unlike Alzheimer’s disease, frontotemporal dementia is not well known to the public.
“It is, however, the most common cause of dementia in people under 60 years of age, though people older than 60 can have FTD.
“The youngest patient I have seen with FTD was in their late 20s, however this is extremely unusual. Most people with FTD present between the ages of 45 and 65 years.”
More than 25,000 Australians are currently living with young-onset dementia, representing approximately five per cent of the total number of dementia patients in Australia.
“Frontotemporal dementias typically don’t prominently affect a person’s day-to-day memory; instead FTD can significantly change their personality or language abilities.”
The Memory Clinic has a strong focus on research, with the aim to get more accurate diagnoses of the various underlying pathologies. Patients who participate in the research program undergo a range of cognitive and behavioural tests, eye movement recordings and experimental brain scanning with MRI at the Centre for Advanced Imaging.
Prof Nestor said that there were dozens of diseases that may cause dementia.
“The most common causes of dementia include Alzheimer’s disease, dementia with Lewy bodies (LBD) and frontotemporal dementias,” Prof Nestor said.
Four years ago, Upper Coomera’s Ross Plumb, now 74, was given the devastating diagnosis he had FTD soon after retiring.
Mr Plumb’s partner and now full-time carer Bobby Blake, 63, admitted she initially “brushed off” his memory loss.
“He was increasingly forgetting the names of people, things and places,” Ms Blake said.
At the time, Mr Plumb told his partner he felt like he was “missing a part of his brain”.
“His own mother had suffered from dementia, and he didn’t want the same to happen to him,” Ms Blake said.
After seeing his GP, Mr Plumb was referred to a neurologist consultant who ran some tests.
Mr Plumb saw a psychiatrist who specialised in Alzheimer’s disease and cognitive problems, who ordered more extensive tests, including MRI & PET scans, before being referred on to Prof Nestor at the Mater Hospital Brisbane Memory and Cognitive Disorders Clinic in April 2020.
He was promptly diagnosed with semantic dementia, a form of FTD where the ability to assign meaning to words, to find the correct word, or to name people and objects is gradually lost.
“Getting the answers about what was happening to Ross has really helped me understand his condition, and how to cope with the changes to him,” Ms Blake said.
While caring for her partner, Ms Blake also dedicates time to supporting other people who are going through the same journey with FTD.
“I joined the Dementia Australia Advocate program, and also run a mentor program. I am passionate about being a support leader to other women, as this is a really lonely and isolating place,” she said.
The father-of-four and grandfather-of six no longer recognises his own family, and Ms Blake says “there is a feeling of helplessness, and a lot of grief”.
Prof Nestor said Mr Plumb was involved in his study that involved researching the use of advanced magnetic resonance imaging (MRI) technology to improve understanding and diagnosis of the major neurodegenerative diseases.
“We currently have a second project running on FTD which is looking at the unfortunately high misdiagnosis rate of the behavioural variant of FTD.
“There are a significant minority of patients with FTD who have a genetic cause, so with continued research, there is hope that we can develop interventions to help prevent people with genetic mutations from developing symptoms.”
