Why more support is needed

Dunn says her eldest son had a particularly hard time when Thomas was born and she was in and out of hospital.

“Charlie spent a lot of time with my mum and other family members, who are wonderful, and he has a great relationship with them. But, obviously, they’re not a parent,” she says.

Ultimately, Dunn-Rice says spending time with Ava and Thomas is a joy. “Caring for people, like your siblings or other little kids, it’s just fun. Some people view it as a job, but really it’s a privilege.”

More support needed

There are more than 390,000 carers under 25 in Australia, like Dunn-Rice, who care or help care for people living with disability, mental illness, chronic health conditions, terminal illness, alcohol or drug dependency, or frail age.

Last month the federal government announced an expansion of the 2025 Young Carer Bursary from $3769 each for 1736 young carers to $4000 each for 2968 approved applicants around Australia, to cover costs associated with education.

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Annabel Reid, chief executive of Carers Australia, says the rising cost of living has put an increased strain on young carers and their families.

“Carers often have to reduce their work hours or stop working entirely. But there are also bigger overheads or costs associated, like medicines and patient transport,” she says.

This means caring households are under greater financial stress and can struggle to cover education costs such as “transport to school, uniforms, school excursions and a laptop for university”.

A systematic review from 2023 looking at the experiences of young carers in Australia found the tasks required of them were diverse, from emotional support to physical care. Many reported feeling as though they were missing out on their childhood, felt disconnected from peers and chose not to disclose their status as carers for fear of bullying or intervention.

In a 2019 study commissioned by Carers Australia, respondents reported caring duties as having a significant impact on their education, from missing classes to feeling disengaged at school. Young women, Aboriginal and Torres Strait Islander people, and those in single-parent families were more likely to encounter these difficulties.

“There is evidence to show young carers have lowered NAPLAN results compared to other Australian students, and this affects their career and lifetime trajectory,” Reid says.

She would like to see better recognition of young carers in the education system, who she says are often treated as lazy, disengaged or naughty by teachers unaware of students’ situations.

Dunn-Rice went to eight different primary schools and is now at his third high school, which he hopes will be his last. He is now at a school specifically for neurodivergent students, and attends weekly tutoring sessions run by Little Dreamers, an organisation that supports young carers.

“I’ve just found they have been so engaged with him and they just seem to get him,” says Dunn of her son’s Little Dreamers experience.

Support groups

Emily Hausman has always been close with her paternal grandmother, who taught her to cook and drive, and would pick her up from school.

“She’s got two sons and I think I’m almost like the daughter she never had,” says Hausman, 22, adding that her mum has always been incredibly supportive of the relationship.

But recently, Hausman has struggled as her grandma’s dementia has worsened. Grieving the loss of the woman she had known, and feeling isolated from people her age, she went in search of a support group.

At a conference last year, Hausman approached Dr Katya Numbers, a researcher at the University of NSW Centre for Healthy Brain Ageing, to see if she knew of any support groups for young carers of people living with dementia.

While there are support groups for carers with dementia, and for young carers, none catered to the specific intersection of the two groups – so Numbers and Hausman decided to start their own, Y-Care (Youth Care of Dementia).

In early January, Hausman posted callouts in local Facebook groups, and the response was overwhelming.

At the first Y-Care meeting, held last month, seven carers gathered at a café in Barangaroo. There were no awkward moments, just relief at finally being able to share with others who understood.

“People were saying, ‘I’ve never had to shop and cook for my family before’, and, ‘I’ve never had to manage the finances or get medication’. There are a lot of unique challenges in this age group that we don’t associate with people that are caring for somebody with dementia,” Hausman says.

The group has now grown to 30, with requests to join coming in every day.

Numbers, whose grandfather has dementia, has both a personal and professional connection to the disease.

“As a researcher I’m thinking, how do we equip this group? And I think we need things like skill-building workshops, resources and a way to connect with each other in person and online,” she says.

Hausman says: “Our goal is to equip young carers with these skills because it is obviously prevalent. There is nothing available, and with the rise of early-onset [dementia] I think more young carers are going to be faced with this.”

Flipping the parent-child dynamic

Lizzy Halyard was in her early 20s when her mother was diagnosed with early-onset Alzheimer’s.

Her experience echoes that of other young carers who find themselves suddenly “parenting a parent”.

“I had to make decisions on behalf of my mum in terms of her safety and next steps for diagnosis. I wouldn’t have anticipated having to do that in my 20s,” she says.

Now 29, she says caring for her mother has often come at the expense of self-care, something most people in their 20s take for granted.

“It’s quite mentally taxing … so there were really long periods – I’d say years – where I was neglecting looking after myself,” she says.

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Halyard says the trauma from seeing her mum’s health decline can make it difficult to enjoy certain events, particularly those that can be unpredictable, like live music.

“The experience of her being diagnosed and having my life turned upside-down was so unpredictable that when I am in other unpredictable circumstances it can be hard for me to be OK. I crave that stability and peace,” she says.

Physiotherapist Katie Magee, 25, attended the group’s first meeting. Her mother, 64, has early-onset Alzheimer’s.

“My mum was quite a formidable character, she was quite clued in, extremely organised,” she says.

Magee relocated to Sydney from Ireland last year, and it was while travelling that she received the news of her mum’s diagnosis.

“It was a relief because she had a confirmed diagnosis, so we knew what was going on. But obviously you feel pretty helpless when you’re on the other side of the world.”

While Magee has a supportive group of friends, they don’t always understand the unique experience of caring for someone with dementia.

Attending the first support-group meeting was “refreshing”, she says, as she could finally talk openly with people who understood.

“There’s a lot of frustration when you’re having to live with it because this is someone who cared for you your whole life, and you’re 1739870618 having to care for them.”

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