A traumatic period of misdiagnosis, medical brush offs and distressing interactions with first responders has prompted dementia awareness advocate, Julane Bowen, to call for steps to increase understanding of rarer dementias.
Among her suggestions are continuing education units on the topic for GPs, the improvement of mental health training for police, and broader assessment processes in relation to financial support.
“We have to increase awareness, so somebody else does not go through the trauma we did,” she said.
Julane’s husband Jeff was diagnosed seven years ago with presumed frontotemporal dementia (FTD), a group of disorders caused by progressive nerve cell loss in the brain's frontal or temporal lobes.
It can be characterised by prominent alterations in personality and behaviour, motor function disturbances and language loss.
Jeff’s diagnosis followed a prolonged period of changes in his mood, relationships and habits, culminating in a distressing episode involving emergency services. Following this, he was scheduled in a public psychiatric ward and treated for depression and schizophrenia.
At each point, Julane’s growing alarm was ignored by medical staff. But when Jeff was finally given an MRI, severe shrinkage of his left frontal lobe was discovered, a sign of FTD.
“I kept saying every day, ‘He's psychotic,’ and they were just ignoring me, like, ‘You're not a psychiatrist. What do you know?’” she said. “They should have listened to me.”
Not long afterwards, he was transferred to the geriatric unit at HammondCare’s Braeside Hospital and formally diagnosed with FTD. She credits the treating psychiatrist there with saving Jeff’s life and her own well-being.
Jeff is now cared for at home by Julane, seven years after diagnosis and long past the initial prognosis of only nine months.
Julane has since gained a law degree so she can advocate for people in similar situations. She’s also been instrumental in the establishment of a nationwide network of support groups called Carer Conversations, developed and run by DSA and the Australian Frontotemporal Dementia Association (AFTDA).
Julane is urging first responder organisations to improve mental health training, and called on the Royal Australian College of General Practitioners (RACGP) to promote rarer dementia education for GPs.
She also points out that financial help for dementia carers rests on assessments designed to confirm memory-related diagnoses, while FTD often does not affect memory at all.
“I think the more awareness we raise, the better it will be for people going forward,” said Julane.