Caring for a loved one with dementia is one of the most stressful situations anyone can experience, just behind fighting in a war.

With the number of Australians living with dementia set to double in the next 25 years and no cure in sight, dementia organisations are looking for ways to better support unpaid carers.

Bernard Marshall, a volunteer for Dementia Australia, said being a carer was “tiring, excruciatingly demanding and very, very lonely and depressing”.

“Psychologists who measure such things put it only a few notches down from being on the frontline of a war zone,” he said.

A parliamentary inquiry into unpaid carers was told the world of care was difficult to navigate because of the confusing plethora of clinical, therapeutic and support organisations.

“Along with the unforgiving and relentless condition that only becomes demonstrably worse over time, you have some picture of the appalling world dementia carers find themselves thrust into,” Mr Marshall said.

Despite the hardship, Dementia Australia general manager Kylie Miskovski said the care and support economy would “collapse” without the support of unpaid carers.

She said their efforts help people living with dementia to stay at home, reducing demand for full-time residential aged care or home care provisions.

With the number of citizens over 65 set to double in the next four decades according to the latest Intergenerational Report, the demand for aged care is expected to explode.

The federal government has taken some steps to boost investments in formal aged care, including a 15 per cent pay rise for workers, and 24/7 mandatory staffing requirements.

Speaking to reporters in Adelaide, Prime Minister Anthony Albanese said the legislation had made “an enormous difference” in welcoming nurses back into the workforce, provided proper compensation for their labour, and attracted others to join the industry.

“Nurses are coming back to nursing homes,” he said on Tuesday.

However, unpaid carers have not received the same benefits.

The Carer Recognition Act was established in 2010 to increase recognition and awareness of the role carers play, but to many its language is not strong enough.

“If they were advocating for access to a service or to be included in a conversation knowing that they had a (rights-based statement) to fall back on, that would be useful,” Ms Miskovski said.

Many Australians, like Mr Marshall, are forced into an early retirement by their unpaid care obligations.

Financial recognition and protections would help carers put their full attention on their loved ones for longer.

Respite services such as counselling and carer support groups would also help address mental health challenges and facilitate connections between carers who understand their situation.

“Carers do it, despite the great cost to themselves, because of love,” Mr Marshall said.

“Selfless love is the kind of action that the world is crying out for, and it’s happening right here.

“I think it’s time we found ways of recognising more formally this action.”

Kat Wong
(Australian Associated Press)