Finding strength in community: Kirsty and Brian share their story

When Kirsty and Brian’s lifestyle and future plans had to change dramatically due to Brian’s Frontotemporal Dementia (FTD) diagnosis, Carer Conversations provided the lifeline Kirsty needed - to keep supporting Brian while managing to look after herself, too. 

For decades, Kirsty (66) and Brian (72) have called Sydney’s northern beaches home, raising their three sons and working at local schools—Brian as a deputy principal and Kirsty as a part-time teacher librarian. Retirement was meant to be a time for travel and relaxation. But in 2020, their plans changed dramatically with Brian’s diagnosis of Frontotemporal Dementia (FTD).

The early signs appeared in 2019 when friends noticed a change in Brian, who was usually sociable and full of energy. ‘A light had been dimmed,’ Kirsty recalls.

A neurologist later diagnosed him with Primary Progressive Aphasia, a condition that gradually impacts his ability to speak. ‘It felt like we were falling into a dark hole with no way out,’ she adds.

Further assessments through the University of Sydney’s Frontier program revealed additional challenges—Brian’s diagnosis evolved to Non-fluent Aphasia and then to Corticobasal Syndrome, which severely affected his balance. As Brian’s condition progressed, managing daily care became overwhelming for Kirsty, especially given his size – he weighs 100kg and is over 6 ft tall.

That’s when Sarah Fox from HammondCare introduced the couple to Carer Conversations. Kirsty joined—and found a lifeline in the group. ‘It’s been transformative,’ she says.

The program not only offered practical advice, like navigating Centrelink or choosing utensils so Brian could feed himself—but also provided access to an informal WhatsApp network where carers could freely share tips and emotional support, any time of the day.

‘Being part of Carer Conversations has helped me understand that the behaviours I see in Brian aren’t him—they’re the disease. That insight has changed everything,’ Kirsty explains. ‘Now, I’m at the point where I can share my story and help others who are starting this journey.’

Kirsty also found encouragement to care for herself and others. A qualified Bowen Technique therapist, she continues to treat clients part-time from home. ‘It keeps me grounded and gives me a sense of purpose beyond caregiving,’ she says. She’s even started supporting a former colleague whose husband was recently diagnosed with dementia. ‘It feels empowering to give back.’

As Brian’s condition evolves —his speech is now limited to yes/no responses or a thumbs up—Kirsty faces the future with clear-eyed honesty:

‘We can’t undo what’s happened. But we can just keep going, one step at a time'.

‘Seeing what other people are going through, from all different walks of life – reminds me that we’re in this together. I wouldn’t have coped without HammondCare and Dementia Support Australia. The program has been my anchor.’