“What the hell do I do now?”
Research Participant, describing her reaction to her husband’s dementia diagnosis
The COGNISANCE study, UNSW Sydney, 2019
Research conducted in 2019 with people who received a dementia diagnosis and their families found that most felt lost. They had difficulty knowing what to do and how to act. To help, the original Forward with Dementia website was co-created to provide trustworthy and reputable answers after diagnosis enabling people and their families to move forward, positively, through the first year after diagnosis.
The original website, created in 2021, has now been refreshed and updated in 2026. It now provides new and updated information, new curated links, personal stories and news for people living with dementia, their families and health care professionals.
Dementia is often considered only as a disease of older age. It’s not.
While the original website was warmly welcomed in Australia, there was a gap. Most information about dementia focusses on older age. Currently it’s estimated that 29,200 people in Australia between 30-64 years live with dementia. Dementia at younger ages presents unique and different challenges. The updated website provides new information, stories and resources focused on people with young-onset dementia, their families and supporters.
This new section was co-created with people living with young-onset dementia and their families, ensuring the information reflects what they found helpful during the early stages of diagnosis.
We gratefully acknowledge the generous support of the Lovell Foundation and Mrs Christine Rowell-Miller in funding this important work.
We hope you find the updated website informative, supportive, and useful to move Forward with Dementia.
