Robyn Ayres, a lawyer and carer for her husband who has advanced Alzheimer's disease, has described the immense difficulty of arranging a five-day respite stay in an Australian aged care facility. Despite contacting more than 30 residential and cottage homes, she could not secure a place and ultimately had to organise an interstate operation involving friends to care for her husband while she attended a board retreat in Queensland.
A System That Fails to Deliver Respite
Ayres, who lives in Sydney, began her search after learning that a board retreat would require her to be away for five days. With only six weeks' notice, her two adult daughters could not guarantee they could step away from their jobs and lives. She turned to My Aged Care's Find a Provider, which listed 188 homes offering respite for people with dementia. However, after countless calls, dozens of emails, and direct conversations with more than 30 facilities, none had a place for the dates she needed.
The primary reason, she found, was that most facilities had no dedicated respite beds. Instead, respite availability depended on a permanent residential care bed becoming vacant, often with a waiting list for permanent care. "I couldn't book six weeks ahead because no one knew whether a bed would become vacant. Someone would have to leave – or, more grimly, someone would have to die," she wrote in an opinion piece for Guardian Australia.
The Gap Between Advice and Reality
Ayres also contacted Carer Gateway about emergency respite. While the staff were helpful, the only available option was limited to four hours a day during her five-day absence. Her husband's advanced dementia requires supervision and help day and night, making four hours insufficient for her to leave the state.
She noted that clinicians and counsellors repeatedly advise carers to take breaks and care for themselves, yet when she tried to obtain the respite she was told she needed, it was almost impossible. "Clinicians and counsellors repeatedly tell me respite is important for me as a carer: I need a break, I must care for myself, and my husband should become used to receiving care from others. But when I actually tried to obtain the respite I am told I need, it was almost impossible," she said.
A Call for Systemic Change
In the end, Ayres arranged for friends in regional Victoria to collect her husband from Melbourne and care for him for five days. She will fly to Queensland for the retreat, return to Melbourne to collect him, and then travel home to Sydney. She acknowledges she is one of the lucky ones, with willing friends, adult children, money for flights, and the persistence to navigate the system. She asks: "What happens to the carer who doesn't have those things?"
Ayres argues that respite should be treated as essential support infrastructure, not an optional extra. If governments want people with dementia to remain at home, policy must recognise that supporting the person with dementia also means supporting the carer. This requires more dedicated short-stay places, transparent and bookable availability, better coordination among My Aged Care, Carer Gateway and providers, and dementia-specific options that distinguish a few hours of help from continuous or overnight care.
Reflecting on her experience, Ayres concluded: "Five days shouldn't take more than 30 enquiries, dozens of emails and an interstate operation involving friends. If we want people with dementia to remain at home, we need to support the person who loves them to keep caring for them."
