Bruce Willis' wife Emma Heming Willis has helped launch a new website for Australian families with loved ones living with the same condition as her famous husband. The actor, known for his roles in Die Hard and Pulp Fiction, was diagnosed with frontotemporal dementia (FTD) in February 2023.
A message for Australian families
Speaking at the International Dementia Conference (IDC) 2026 in Sydney, Emma Heming Willis shared her family's experience. "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," she said via video message. "For our family, receiving a rare dementia diagnosis came 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 new website, raredementia.com.au, supported by Hammond Innovations, aims to help Australian families navigate not only the diagnosis but also what comes next. Ms Heming Willis also threw her support behind HammondCare's rare 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.
Understanding frontotemporal dementia
Unlike other forms of dementia, FTD primarily impacts language, personality, and behaviour. It accounts for about one in 25 cases of dementia. The International Dementia Conference brought together experts from around the world to share latest research and best practice, as well as hearing from those with lived experience.
Ms Heming Willis previously featured as part of news.com.au and The Australian's Think Again campaign, launched in September last year, revealing the impact the diagnosis has had on her two young daughters 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."
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.
