“I was 21 and balancing uni, work and caring for my mum”

Sally was just 21 when things began to change for her mother Kim. 

As the youngest of three, and the only one living at home, she was the one who first noticed the changes.

“I said to my sisters that Mum was doing some out-of-character things,” Sally said. 

“I’d go to the cutlery drawer and pull out something that didn’t belong. 

“She was also struggling to read and write and had difficulty with her visual perception.” 

After countless doctors’ appointments and scans, Sally’s mum was diagnosed with posterior cortical atrophy (PCA) at the age of 55. 

Almost overnight, Sally found herself juggling university, part-time work and the unexpected role of being her mum’s carer.  

Unexpectedly a carer

Family members can often suddenly find themselves stepping into the role of carer when a loved one is diagnosed with dementia. 

While caring can be rewarding, it can also bring significant life changes as Sally discovered.

“I was living at home, so it started with going to appointments together, setting up funding for support and just helping her with day-to-day things,” Sally said.  

“Her condition progressed really quickly, so we had amazing carers who came in during the day when I was at university or my sisters were at work. 

“Between myself and my sisters though, it really became a shared responsibly of having to fill in the gaps to look after Mum.”

An isolating experience 

Looking back, Sally reflects on how isolating it was to be a young carer. 

While her friends were studying, working and going to parties, her priorities were very different. 

“People would share that their grandma had dementia and I know that carries its own emotional weight,” Sally said. 

“But the way younger onset dementia presents and the daily reality of caring for someone living with it can be a very different experience. 

“I would have a really confronting medical appointment to take Mum to and then I have to quickly rush off to uni while trying to process what had just happened. 

“I felt disconnected because I’d be talking with someone as if this massive thing just hadn’t happened in the hours beforehand.

“I knew that people my age don’t really go through things like this, so I didn’t want to burden anyone about it.”

You don’t have to do it alone

Sally found  support and advice from Dementia Australia helpful through the various stages of her caring experience.

“I always recommend getting in touch with Dementia Australia straight away,” Sally said. 

“Over the years I’ve called the (National Dementia) Helpline a number of times with questions and found the website resources and stories of people in similar situations really helpful.

“In the early days especially, I remember so clearly speaking to someone on the phone and then reading an article of someone else with PCA – it was a moment of not feeling so alone.”

Advice to other young carers 

Almost a decade after first becoming a carer, Sally shared the advice she would give to her 21-year-old self. 

“If I could go back and speak to my younger self, I’d say, ‘You’re doing so much better than you think you are’.

“It is so easy to assume that you don’t know what you’re doing and you’re fumbling your way through the dark. 

“I really struggled back then thinking I wasn’t doing enough but really, know you are doing so much.”

As well as recognising the work you are doing, Sally’s advice to others is to find and lean on your support network. 

“Having just one person that you can really confide in is really beneficial because there will be so many moments where you think ‘what am I doing, I don't know how to deal with this and am I able to deal with this?’.

“It’s taken me a while to get to this point but really try to find some rock-solid people to open up and share with whether it’s family, friends or a professional, you don’t have to navigate it on your own.”

Where to find support

Caring for someone living with dementia can be overwhelming at any age but young carers face unique challenges. 
If, like Sally, you’re caring role for a loved one living with dementia, please know that you are not alone. 
You can find information about caring for someone living with dementia on the Family, Friends and Carers page on our website. 
Dementia Australia’s Younger Onset Dementia Guide is the go-to resource for people living with younger onset dementia (diagnosed before the age of 65) as well as their carers and family.

For free and confidential support, advice or information, contact the National Dementia Helpline on 1800 100 500 or visit our website for live chat and email options. 
The National Dementia Helpline operates 24 hours a day, seven days a week, 365 days a year.