The Winter 2025 edition is the last Forward with Dementia newsletter. We thank the hundreds of people who subscribed or wrote to us and to those who found the Forward with Dementia website a useful companion while navigating the perplexing weeks and months following a diagnosis of dementia.
Despite this being our last newsletter, the Forward with Dementia website is continuing!
Forward with Dementia was a National Health and Medical Research Council funded project born from observations that diagnosis was not always delivered in a compassionate and helpful way. Following diagnosis, some people with dementia and family supporters felt abandoned, unsure of where to turn or what their future could look like.
Australia is not unique in needing better support following diagnosis. In this project, we partnered with colleagues in Canada, the UK, The Netherlands and Poland. Internationally, we found that people living with dementia and families wanted practical, evidence-based, positive information and support that would enable them to come to terms with dementia, prepare them for the future, and help them live well, as independently as possible in the present. Shortly after the research project began, we were faced with a global pandemic. We were forced to conduct an online campaign instead of the focused face-to-face campaign in specific geographic areas originally planned.
The main outcomes of this project are five, country-specific Forward with Dementia websites, co-designed with people living with dementia and families. The five websites are similar, but have information carefully tailored to each county’s health and social support systems and unique culture. Education and resources for health professionals, including GPs, were developed and made available via webinars, YouTube and via the website.
A consistent observation throughout the project was the delay many experienced in receiving a dementia diagnosis. As a result, the research team embarked on a new project, Facing Dementia Together (formerly called Face Dementia) which aims to create awareness about the signs and symptoms of dementia and how to reduce your risk, as well as the benefits of timely diagnosis and reduce dementia stigma. The Facing Dementia Together website is now available in English, Simplified and Traditional Chinese, Arabic and Vietnamese.
We would like to continue maintaining the Forward with Dementia website but are currently looking for funding to provide a website refresh. We hope that you have found the seasonal newsletters interesting and helpful. As they say, it is not goodbye, but until next time…
