Improving lives of people living with dementia - while having dementia yourself
30/04/2026
Robyn Rex has a special type of qualification for her volunteering role at HammondCare Erina dementia care village on the NSW Central Coast.
Robyn, 75, of Ourimbah, lives with Alzheimer’s disease, first diagnosed in 2018. She volunteers two days a week at HammondCare Erina doing companion visits, getting cups of tea for residents, helping at mealtimes and generally adding life to the village.
Many of the people she supports have an increased complexity of needs.
“Maybe part of me might be looking to the future. Maybe I’ll be there myself in 10 years’ time,”Robyn said.
“I can see myself still getting cups of tea for everyone as a resident and I’ll still think I am volunteering there.”
Robyn will share her intriguing journey with Alzheimer’s disease, and her commitment to devoting her time while healthy to others with dementia, in an on-stage interview with veteran TV journalist Ray Martin during the International Dementia Conference 2026 in Sydney in June.
Robyn’s connection to HammondCare Erina is deeply personal. Her mum Beryl Jean – known as Jude - McCusker died in 2013, aged 88, while a resident at the very same village on Terrigal Drive, Erina.
Robyn, an only child, was a frequent visitor first to HammondCare Woy Woy and later HammondCare Erina’s Koel cottage to support her mum as her health declined.
For a long time, Robyn found the memories of her mum’s illness were so raw she never wanted to go anywhere near the village.
“I would drive the long way to avoid ever going along Terrigal Drive,” she said. “There was no way I wanted to step back in there.”
HammondCare volunteer co-ordinator Joanne Currie with Robyn Rex
Robyn’s own journey with dementia began when she noticed some changes that she recalled were part of her mother’s early experience. In 2017, she came across a dementia drug trial by Janssen Pharmaceuticals, later cancelled, that included a thorough dementia diagnosis testing beforehand to confirm eligibility.
She was accepted as a trial participant and took the tests. The diagnosis, earlier in the disease progression than in most other cases, came as relief.
“The more you know – the more you can do,” Robyn said.
With the help of good medical advice and support of her husband of 55 years Steve, Robyn has re-launched her life and achieved personal goals. She devoted herself to fitness, lost about 10kg and gave up drinking.
Her rediscovery of athletics led to a bronze medal in the Under 75s at the Masters Games in Sydney.
In 2022, a close friend’s husband, diagnosed with frontotemporal dementia, became a resident at HammondCare Erina. Soon she found herself visiting the same village to support her friend.
Eventually, she applied to volunteer at HammondCare Erina. She helps in Koel cottage, the very cottage where her mum was resident, supporting residents like Judith Morris, the widow of Bradman-era Test cricketer Arthur Morris.
Volunteers with a dementia diagnosis are uncommon.
HammondCare General Manager Pastoral Care and Volunteer Services Steve Calder said Robyn was a valued volunteer at Erina.
“Her story wonderfully illustrates that a dementia diagnosis is no impediment to living life with purpose and contributing to the community,” Rev Calder said.
International Dementia Conference 2026 featuring health professionals, researchers, advocates, scientists and those with lived experience will be held at the Sydney Hilton on June 4-5. For more information go to www.dementiaconference.com.
