Key Takeaways
- A Vital New Resource: Emma Heming Willis has officially launched raredementia.com.au to help Australian families navigate the complex and often isolating journey of a rare dementia diagnosis.
- Personal Advocacy: Speaking at the International Dementia Conference in Sydney, Ms. Heming Willis highlighted the lack of clear guidance her own family faced following Bruce Willis's 2023 FTD diagnosis.
- Beyond Memory Loss: Unlike traditional Alzheimer's, rare forms of the disease like FTD (which accounts for 1 in 25 cases) often manifest as profound changes in behaviour, personality, and language.
- HammondCare Partnership: Backed by HammondCare, the new platform provides crucial local support and awareness for a range of conditions, including Lewy Body Dementia and Younger Onset Alzheimer’s.
Emma Heming Willis has launched a vital new online resource for Australian families navigating the complex realities of rare dementias.
Speaking via video at the International Dementia Conference 2026 in Sydney, the wife of actor Bruce Willis reflected on the isolation and trauma her family experienced following his diagnosis with frontotemporal dementia (FTD) in 2023.
“We walked out of our early diagnosis with no road map, no clear guidance,” she shared. “What we were facing did not look like what most people imagine dementia looks like. Because of that, it would feel incredibly isolating.”
FTD accounts for roughly 1 in 25 dementia cases. Unlike Alzheimer’s, which is typically associated with memory loss, early FTD symptoms primarily involve extreme changes in behaviour, personality, and language.
To ensure other families don’t face this same uncertainty, Ms. Heming Willis introduced raredementia.com.au.
Led by HammondCare, the platform connects Australians with essential support services and aims to broaden community awareness.
“Support should not depend on how common your diagnosis is,” she emphasized.
IDC 2026 co-convenor Marie Alford noted that the website will cast a much-needed spotlight on conditions that often fall outside the dominant dementia narrative.
Beyond FTD, the site provides guidance on other rare forms, including:
- Lewy Body Dementia
- Younger Onset Alzheimer’s Disease
- Primary progressive aphasia
Since her husband’s diagnosis, Ms. Heming Willis has become a leading advocate for dementia awareness. This new website serves as a crucial step toward ensuring Australian families facing rare dementias find the clarity, guidance, and community they desperately need.
