The wife of Hollywood actor Bruce Willis has helped launch a new website for Australian families with loved ones living with the same condition as her famous husband.
“We walked out of our early diagnosis with no road map no clear guidance just a check back in in a month and that was it,” Emma Heming Willis told the International Dementia Conference (IDC) 2026, held in Sydney.
“For our family, receiving a rare dementia diagnosis came up with so much confusion and uncertainty.
“What we were facing did not look like what most people imagine dementia looks like. Because of that, it would feel incredibly isolating,” the 47-year-old said via a video message.
Her Die Hard and Pulp Fiction-star husband was diagnosed with frontotemporal dementia (FTD)in February 2023, with FTD accounting for about one in 25 cases of dementia.
Unlike other forms of dementia, FTD primary impacts language, personality and behaviour.
The International Dementia Conference has brought together experts from around the world to share latest research and best practice, as well a hearing from those with lived experience.
Ms Heming Willis said the new website raredementia.com.au – supported by Hammond Innovations – will help Aussie families navigate not only the diagnosis, but what comes next.
She also threw her support behind HammonCare’s rate dementias support program.
“The rare dementias support program, led by HammondCare, as part of the international rare dementias support community, recognises something deeply important – support should not depend on how common your diagnosis is,” she said.
Ms Heming Willis featured as part of news.com.au and The Australian’s Think Again campaign which was launched in September last year, revealing the impact the diagnosis has had on the two young daughters she shares with Willis.
“I think they’re doing well, all things considered,” she told Louise Bryant, who lost her partner Craig “Moose” Moore to dementia.
“But it’s hard. They grieve. They miss their dad so much. He’s missing important milestones. That’s tough for them. But kids are resilient. (Although) I used to hate hearing that because people didn’t understand what we were walking through. I don’t know if my kids will ever bounce back.
“But they’re learning, and so am I,” she said.
Dementia is now the biggest cause of death among Australians, with figures compiled by the Australian Institute of Health and Welfare and released by Dementia Australia showing 446,500 Aussies are impacted by the brain health condition – up 13,500 cases on the previous year.
IDC 2026 co-convener Marie Alford said the new website should help improve understanding of conditions that fall under the umbrella of dementia.
“When we talk about rare dementias it’s with an understanding that they are not the dominant story in the narrative – this website will help address this,” Ms Alford said.
Read related topics:Think Again