In short:
First results from the 2024 National Carer Survey showed about 60 per cent of respondents reported being socially isolated, and around half suffered from high or very high levels of psychological distress.
These figures were similar to or slightly higher than those found in the 2022 National Carer Survey.
What's next?
With the number of carers in Australia growing, experts argue that more sustainable investment is needed in formal support.
It has been eight months since Lorraine Harrison's partner of 22 years was diagnosed with terminal lung cancer.
"At first it was a shock, and then I had to adjust to the reality of what it means to lose my partner, who I love dearly," she says.
"It's painful and gut-wrenching bearing witness to your partner going downhill."
At 71, Lorraine says age is a factor in her grief.
"My own mortality is a bit clearer. I've started to think, 'What the hell will become of me?'"
Lorraine is one of approximately three million carers nationwide, a figure that equates to roughly one in eight Australians. One in four is aged over 65, and most are women.
And, as revealed by the preliminary results of the 2024 National Carers' Survey, Lorraine is not the only one grappling with existential distress.
Lorraine Harrison has found it difficult to access appropriate formal support. (Supplied: Lorraine Harrison)
More than one in two carers reported high or very high levels of psychological distress, while the same number reported low or very low personal wellbeing.
Almost two thirds, meanwhile, said they were socially isolated, or highly socially isolated.
These numbers remain stubbornly high after three iterations of the national survey, which show similar levels of psychological distress and social isolation.
System difficult to navigate and support lacking
Elena Katrakis, CEO of Carers NSW, says a contributing factor is that carers typically prioritise the health and wellbeing of the person they are caring for over their own.
"It means they don't look after their own health, and don't connect to services for themselves.
"That can result in feeling isolated, and impacts your ability to interact with other people, while carers also find that family and friends disappear over time, or are not as connected with you, because your focus is on caring."
Elena Katrakis, CEO of Carers NSW, says carers can neglect their own needs. (Supplied: Elena Katrakis)
Carers Victoria CEO Judith Abbott says the results of the latest National Carers Survey are being used to improve the services available to carers.
After the 2022 survey, Carers Victoria conducted an analysis of the factors most likely to influence carer wellbeing, finding social connectedness was most important.
"So we know if we can provide opportunities for connection, we can make a difference," Ms Abbott says.
But Lorraine argues there is still a long way to go, after having experienced a number of barriers when trying to access formal support.
As a social worker of 30 years (including 10 years working for a carer support service), she is in a better position than most to understand how to navigate the service system.
She has tried to access help through the Australian government's Carer Gateway portal, while also contacting a number of carer support services directly.
'Sandwich carers' not getting adequate support
Many Australians are caring for dependant kids and sick parents, and the physical and mental health impact is significant. What can be done about it?
But, living in the western suburbs of Melbourne, she has been unable to find a peer support group in her area.
Instead, Lorraine was invited to bi-monthly brunches with other carers, which she says failed to engender genuine connection.
Lorraine, who experiences hearing loss, describes the environment these were held in as "noisy" and lacking in privacy, and says there was no facilitated discussion between carers.
The brunches then stopped abruptly over summer.
"The person running the group said it wouldn't be happening because people have holidays, but my brain went: 'Carers aren't having a holiday.'"
These repeat frustrations led to Lorraine feeling "isolated and lonely", arguing that the health system is in "managed chaos".
"It's enough for [the system] to deal with the person with the health problems, let alone their family member," she says.
"I have certainly tried to seek support for myself, but I've probably gotten to the stage where it just upsets and annoys me, so I've pretty much given up."
Ms Abbott acknowledges that carers often report difficulty navigating the support available to them, and encourages those who are struggling to contact their statewide service (such as Carers Victoria) to ask for help.
"Actually figuring out what's around, and how to get it for both yourself and others in your care relationships is really tough," she says.
"A lot of carers have this experience, which is actually so time-consuming or complex that they almost give up."
Unable to find peer support, Tim created his own
A state away in Queanbeyan, a regional NSW town on the border of the ACT, Tim McKillop also struggled to find adequate peer support, eventually taking matters into his own hands.
At 40 years old, he cares full-time for his seven-year-old son Jackson, who is autistic and has ADHD, as well as a brain condition called a Chiari malformation.
He lives with his five-year-old daughter Jemma and wife, Ciara, who works full time to support the family.
Unlike Lorraine, Tim took a while to realise that he was eligible for support services.
"I didn't see myself as a carer, I saw myself as a parent," he says.
"It wasn't until we were really at rock bottom that I realised I needed to do something."
Tim also accessed Carer Gateway, and describes the services he was connected with as "beneficial", including cleaning, parenting courses and advocacy support.
But he was unable to find affordable peer support in his area, eventually setting up one of his own for carers and parents of autistic children (CAPSS).
Thanks to the generosity of a local business, who offered them a space for free, Tim was able to facilitate and run face-to-face meetings with like-minded parents.
Tim McKillop started a peer support group for carers and parents of children with autism. (Supplied: Tim McKillop)
"People got a lot out of it, sometimes we had nine or 10 show up, but unfortunately our capacity is no longer there to run it," he says.
"But I still get enquiries once or twice a week from people looking for a face-to-face support group."
Tim says most of these enquiries are from carers and parents who are feeling similarly isolated.
"Socially it can be very, very hard to connect," he says.
"Most of our connection comes from other people in the autistic community … and I hear it all the time: I'm not the only person who struggles with social isolation."
Moving forward, he wants to see more carer organisations running peer support groups, with a caveat: "It's very important that anything that is run is not run for the value an organisation can get from it … but is run by those with lived experience."
Financial stress on carers increasing
Previous research has found that not only do carers do a mountain of often invisible work, they also suffer financially because of it.
One Carers Australia report found that carers lose an average of $567,000 in earnings and superannuation by the age of 67, and it may be getting worse.
Some 59 per cent of 2024 survey respondents had experienced some form of financial stress in the prior 12 months, with 18 per cent struggling to pay bills on time and 36 per cent saying they would have been unable to raise more than $2,000 for something important.
ABC Health in your Instagram feed
Follow @abchealth on Instagram, where we're busting myths and sharing practical, smart health advice.
This includes Tim. He quit his job two years ago to take up full-time caring, after experiencing serious mental health issues.
Tim recognised that it was "unsustainable" to balance paid work and his caring role, but says the choice affected his family's financial security "immensely".
"We are literally unable to have a two-income household, and I'm on quite a small carer's pension," he says.
"If something happened with my son's brain condition, and we had to go to Sydney, we'd need to borrow the money. That's really affected how we're able to live, and the experiences we'd like to give our children."
Judith Abbott was appointed CEO of Carers Victoria in 2021. (Supplied: Judith Abbott)
Carers Victoria's Judith Abbott says there is evidence that the financial strain on carers is increasing.
"We believe there's quite a strong connection between growing financial stress and psychological distress.
"We get more calls than ever now from people who just need help to pay for the cost of transport and those other basic things."
It's a situation she says needs to be urgently addressed, starting with top-down investment.
"The idea that you could in effect sacrifice your employment and financial security to perform this role, and at the end of it, have a life and retirement of poverty, is unacceptable.
"We in Victoria have a state government that invested $38 million over four years in respite, and that's fantastic, but at the same time, we know that the number of carers is growing.
"We've got to figure out ways of providing supports that are sustainable and accessible for carers across the state."