Kate (59) and Steven (63) are navigating the profound impact of Steven’s Frontotemporal Dementia (FTD) diagnosis with the support of their close-knit family, including daughters Gillian and Stella. As the family continues to adjust, they’ve found comfort, strength and connection through the Carer Conversations program.
Becoming carers overnight
Steven’s changing behaviour was the first sign something wasn’t right. Kate recalls, ‘It took time to understand what was happening. Thankfully, our GP listened to our concerns. After several tests and a CT scan, the diagnosis of dementia was confirmed.’
For Gillian, the shift was deeply personal: ‘It was hard going from being cared for by Dad to helping care for him. But once we knew the diagnosis, it gave us a clearer picture of how to move forward as a family.’
Adjusting to a new reality
Daily life has changed significantly. Kate has had to pick up roles Steven once handled—like home maintenance and other tasks she never imagined doing alone. ‘But the biggest change,’ she shares, ‘has been losing my best friend. He’s still here, but communication is different now. That’s been the hardest part.
Gillian adds that having her parents move into her grandmother’s home was a difficult but necessary step. ‘It meant Mum wasn’t alone and had help day to day. It wasn’t easy, but it’s brought us all closer.
The power of peer support
Discovering the Carer Conversations program has made a world of difference.
‘For the first time, we felt truly understood,’ Gillian says. ‘Before this, we didn’t even know what FTD was or where to turn. We felt completely isolated.’
Kate agrees: ‘Hearing other carers’ stories helped me stop comparing Steven’s journey to other peoples. FTD is unique, and knowing I’m not alone has been incredibly comforting.’
Where practical help and emotional support meet
Kate shares: ‘We’ve learned everything about navigating the NDIS, for example, to understanding why Steven’s behaviour might change, and even how to handle difficult times like the holidays.’
Mother and daughter both credit Carer Conversations with giving them tools, knowledge, and most importantly, a sense of community.
‘We take things one day at a time now,’ Kate says. ‘And we treasure the small moments.’
‘For us,’ Gillian adds, ‘Carer Conversations has been life changing. It gave us the support we didn’t even know we needed.’