Making the Invisible Visible: Dementia Justice for Young Carers Through Leadership, Mentorship and Community

This free webinar brings together voices from Australia and the United States to shine a light on the often overlooked experiences of young people caring for a family member with young onset dementia. Hosted by the Australian Young Onset Dementia Special Interest Group, the session features Patti LaFleur and Liz Matthews from Lorenzo's House, dementia researcher Dr Katya Numbers from the University of New South Wales, and lived experience advocate Isabelle Burke from Deakin University. Together, they will explore why young dementia carers so often remain invisible within services and research, share personal stories of navigating diagnosis delays and finding community, and discuss what dementia justice looks like in practice for young carers. The webinar will showcase how global and local initiatives, including Lorenzo's House, the Dementia Care Social Club, and the NEXTGEN advocacy movement, are turning isolation into connection, recognition, and practical support. This webinar is suitable for people living with young onset dementia, their family members and carers, as well as researchers and professionals working across health, disability, and aged care.

Speakers:

Patti LaFleur is the former care partner to her mom, Linda, who had young onset dementia, and a former elementary educator of over 10 years. Patti is the Lorenzo's House Programs Lead, where she designs and leads programs with intentionality, knowledge and love. Her capacity to connect with family members through lived experience and profound generosity of spirit sets the tone for how Lorenzo's House shows up for families. Patti has a Master's Degree in Instructional Leadership and is a Certified Dementia Practitioner, who has spent countless hours volunteering with people living with neurocognitive disorders, and as a community educator for the Alzheimer's Association.

Liz Matthews joined Lorenzo's House to celebrate her father Dave, who walked with behavioural variant frontotemporal dementia/amyotrophic lateral sclerosis and passed in 2016. Liz is a 22-year-old undergraduate student at Lehigh University studying behavioural neuroscience. Her passion is bridging scientists and medical professionals with family members and loved ones of people walking with young onset dementia. By attending SUMMIT, Liz hopes to learn from the stories of others in order to advocate for a young onset dementia world that is representative of those affected.

Katya Numbers is a dementia researcher and Senior Lecturer at the University of New South Wales Sydney, and the daughter of Joe, who is living with vascular dementia in the United States. Her work focuses on dementia risk and early detection, younger-onset dementia, and the experiences of family carers. Alongside her research, she develops postgraduate training for future mental health professionals through the University of New South Wales' Master of Mental Health Program. Katya believes research is only valuable if it reaches the people it is intended to help. This belief led her to found the Dementia Care Social Club, a grassroots community that makes dementia education accessible to people living with dementia, care partners, clinicians, researchers and advocates. The club creates opportunities for people to learn alongside one another, as well as from one another, share experiences, and build community.

Isabelle Burke is a lived experience advisor to dementia-related research and PhD candidate in the School of Psychology at Deakin University. Isabelle's expertise is grounded in her experience caring for her mother, Christine, who died with young onset dementia at age 59. After many years spent looking for answers, Isabelle now advocates nationally for timely diagnosis and better post-diagnostic support. She serves as a lived experience advisor to several Australian universities and is currently a non-executive director of the Dementia Australia Research Foundation. Isabelle's advocacy and lived experience have established her within national networks of people living with dementia, carers, and advocacy organisations. Connecting with others who have a shared experience of young onset dementia allows Isabelle to honour her mum and ensure that each family diagnosed with dementia has a better experience than the last.