Frontotemporal dementia (FTD) – Gina and
George's story
Gina became the carer for her husband George after he was diagnosed with frontotemporal dementia (FTD). The progressive nature of this neurodegenerative disease means more research is needed to manage and lessen the symptoms.
George was once an active man who enjoyed sports and keeping physically healthy. However, in 2017 his behaviour and personality changed, and he experienced a rapid decline in health over the next few years.
In March 2018, George was diagnosed with frontotemporal dementia (FTD), a rare form of dementia, and passed away in early 2022, only four years after his diagnosis.
Gina has since become an advocate for FTD research and is committed to ensuring that other Australians living with FTD receive much needed support and education on this disease.
She recounts that in November 2017 George began exhibiting out-of-character behaviours.
While holidaying overseas, Gina and their friends noticed a significant decline in George's behaviour and mood, prompting Gina to seek medical advice.
Gina initially thought that George’s withdrawal from social activities was due to retirement, and organised for George to see a psychiatrist, but the psychiatrist noticed a tremor in George's left thumb and referred him to a neurologist.
Following brain scans and cognitive tests, the neurologist diagnosed George with a mixed FTD disorder, specifically, FTD and progressive supranuclear palsy (PSP).
George was recommended to the FRONTIER Research Group at the Brain and Mind Centre, the largest FTD clinical research group in Australia, where he participated in critical testing. Gina also joined the FRONTIER’s FTD support groups and found additional FTD-specific support services through George's enrolment in the program.
George’s condition continued to deteriorate, leading to him becoming home bound and was put into palliative care. Gina arranged for a nurse to visit their home to help with George's mobility and eating needs and provide care for him until his passing.
‘After George's death, I felt a sense of isolation and disconnection from the world,’ says Gina. ‘But I found comfort in my FTD support group, where I formed close friendships with people who understood what I was going through.’ She encourages others in similar situations to seek out support groups.
Advocating for FTD research and awareness
Since George’s passing, Gina continues to advocate for frontotemporal dementia research.
‘It’s a devastating disease that not only affects the individual, but also their families,’ says Gina.
The Director of the FRONTIER Research Group, Professor Olivier Piguet says, ´We are so grateful that Gina is an enthusiastic ambassador for the research that we are doing at the University of Sydney.’
FRONTIER is a highly collaborative, interdisciplinary research clinic that investigates frontotemporal dementia (FTD) in collaboration with ForeFront Ageing and Neurodegeneration.
PSP is a rare form of dementia that is closely related to FTD. It predominantly affects a person's ability to control their movements, balance, and speech, but also affects behaviour and cognition. More information can be found on the Frontier Research Page.
For more information on FTD, visit the FRONTIER Research Group website.
Donate to the FRONTIER Research Group here.
Clinicians can arrange a referral to the FRONTIER Research Group at the Brain and Mind Centre by emailing frontier@sydney.edu.au.
FRONTIER Research Group is also currently recruiting for trials. To find out more email frontier@sydney.edu.au.