We are all going to die one day but would you want to know in advance how? It’s the dilemma faced by journalist Renee Brack when contemplating whether to find out if she had the gene that killed her father. Despite being warned by a range of experts that she should not, her curiosity got the better of her.

Journalist and documentary film maker Renee Brack.Credit:James Brickwood

The gene in question is one that indicates whether you are at risk of getting Alzheimer’s, which affects up to 70 per cent of the nearly 500,000 people in Australia with dementia currently. Though medications can help slow the progression of the condition in some patients, there is no treatment; it’s the second leading cause of death for men in this country, after heart disease, and the leading cause for women.

Brack’s poignant new film Ticketyboo traces her dilemma and the challenges associated with this disease of the mind that also affects the body. It is screening as part the Melbourne Documentary Film Festival this weekend and later this year in Sydney.

Along the way, the 56-year-old comes up with strategies for anyone dealing with a similar situation. “When Dad told me he’s invented the fridge, I didn’t correct him, instead I walked over and complimented the design,” she says at the start of the film. “It was selfish to keep dragging him back into my reality, it was better to go join him in his, and we’d go time-travelling together.”

As many of the 1.6 million-odd people who care for loved ones with the condition would know, correcting someone who has dementia is not helpful. For Brack, it was the first of many epiphanies.

Before he was diagnosed, Thom Brack displayed signs his daughter put down to him not coping with retirement. “One day he went to the dentist and disappeared for 16 hours, he didn’t come home, walked from [Sydney’s] Manly to Barrenjoey Lighthouse where he ended up on the edge of a cliff. He went into hospital that night and they did the test,” she says, which revealed what was going on. Later, the family identified clues that might have indicated something other than ageing was at play, dating back at least a decade.

A still from Brack’s documentary Ticketyboo.

Ironically, the film’s name comes from an expression her father often used when asked how he was in his later years. “I’m tickety-boo, I’m tickety-boo,” he’d say, which Brack now sees was an effort to disguise was happening. She discovers the term autophobia, which means fear of abandonment and was the reason he wanted to keep his mental decline hidden.

Before his diagnosis, Brack often found herself getting cross with him. That bad behaviour, she says, was her guilty secret. “I used to get really frustrated with him when he couldn’t stay in the same conversation,” she says. “Communication was our thing, talking is what we did.”

She also admits that she kept her distance for a time, not knowing how to connect with him. What she learned through making the documentary was just to treat him like anyone else: the worst thing is to walk away.

Brack’s initial plan was to create an exhibition of her father’s artwork, “to resolve my grief and guilt”. That morphed into a different undertaking when one of her co-producers suggested she get tested for the gene. Experts including medical specialists advised against it but Brack was determined. The testing ranged from cognitive assessments through to an MRI, a PET scan and a lumbar puncture.

Ita Buttrose is an ambassador for dementia and has lived experience of the condition – her father had vascular dementia. “I sometimes felt wretched that I couldn’t do more for him,” she admits in the film, before encouraging Brack, and anyone like her, to stop being hard on themselves. “What would your father say to you if he were here now?” Buttrose asks. “He would tell you not to feel guilty.”

Throughout Ticketyboo are moments of great insight and understanding, as well as humour. Brack learns that her experience is typical of many in the same situation: grief, anger, despair, confusion and denial are common. Issues around aged care, including sedation, staff-patient ratios and training, as well as the benefits of rehabilitation and research into a vaccine against Alzheimer’s are explored.

One suggestion made by a grief counsellor was for Brack to create a living memorial for her father. His favourite colour was blue, so she planted some forget-me-nots from seeds and tended them at her home in Sydney. “You know how we’ve been smashed by rain? They’re not well,” she says. “I’m hoping they will recover – maybe in spring there’ll be a resurgence.”

Ticketyboo screens on July 30, at 3.20pm at Cinema Nova, Carlton, followed by a Q&A panel of some of Australia’s leading dementia experts.

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