“I can advocate for Mum when she can’t navigate the system”

When Nick was 30 he moved back home to care for his mum when she was diagnosed with dementia, hoping that being with her in person would make things easier.

However, he spent much of his time navigating a complex healthcare system made up of agencies that didn’t seem to speak to each other.

“I feel like I’ve lived 100 lives in the last 18 months,” Nick said.

“I can’t fix the problem with my Mum but, as an engineer, I can problem-solve.

“I can advocate for her and give her a voice when she can’t navigate the system.”

He said being an authorised representative for his mum was instrumental in helping her get the support she needed.

“I have a My Aged Care number so I have direct access to my mum's account as her support network.”

In  the ‘Navigating the health care system’ episode of the Hold the Moment podcast’s second season, Nick explained that what sounded like small technical details could end up saving a lot of time and stress for carers.

Dementia Australia’s Dr Kaele Stokes who has worked with the agencies who offer care and support as well as countless families who have accessed these services, provided advice in the podcast episode.

“We tend to hear from people particularly when there’s a point of crisis,” Dr Stokes said.

“A lot of the work that Dementia Australia is doing is working with people to avoid those crises all together, so having a planned conversation around what’s going to happen.

“It’s about understanding the trajectory of dementia, what sort of challenges might come up and knowing who to talk to at the times where things do escalate or change in a more sudden way.”

Listen to the podcast

Listen to personal and professional insights on navigating the health care system from Nick and Dr Kaele Stokes on episode two of Hold the Moment’s second season, which you can listen to wherever you get your podcasts.  

In the ‘Navigating the system’ episode, listen to professional and personal insights on navigating the healthcare system to access support.

More support

You can find more information about caring for someone living with dementia, on the Family, Friends and Carers page on our website.

For free and confidential support, advice and expert information you can call the National Dementia Helpline.  

The National Dementia Helpline operates 24 hours a day, seven days a week, 365 days a year on 1800 100 500.