Step Up for Dementia Research

Latest news and research outcomes

Meet Danijela Hlis

Monday, February 18th, 2019

Danijela has dedicated her last ten years to supporting people living with dementia and of culturally and linguistically diverse backgrounds.  Fluent in French, English, Slovenian and Italian, “I see the sparkle in their eyes when I speak to them in their mother tongue”, she says.

Painful Memories Forgotten

Born in Slovenia (then Yugoslavia) 69 years ago, Danijela studied languages and worked in Europe – Paris, Rome, Barcelona, London, Geneva – before finally settling in Australia in 1979.   Her aging parents migrated to Australia 20 years later, and Danijela became their carer. Her mother had dementia.  Danijela says “forgetting the past was a good thing for mum.  She forgot the two wars, the hunger and the abuse … She was happy until the end”.

Loss of Identity

For Danijela though, she describes losing herself to the demands of fulltime caring for parents who did not speak English, “back then, there were no opportunities for ethnic specific care and or respite.” Danijela shares that “I needed a new identity after they both passed away, I had to reinvent myself. As well as loss and grief, one struggles to start living for oneself again.

Step by Step

With researchers always struggling to recruit participants, Danijela believes that the StepUp for Dementia Research initiative is well overdue.  She jokes that she has become addicted to her involvement with researchers.  She remembers feeling “totally inadequate and stupid” at the start, when the notion of consumer involvement in research was first embraced some eight years ago.   She encourages others to “know that you are wanted and needed, and trust that the dementia research team members will support you in the process”.  She adds that “No medical cure discovered thus far was found without research.  If we have a hope for a cure, we cannot do it without everyday people participating in research.”

 
The University of Sydney

Please note: This service is in the early implementation phase. Find out more.