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Dementia is outpacing cancer as the most feared disease. Most people feel overwhelmed when first diagnosed with dementia. They despair of their future, lose hope and don’t know what to do next.
People newly diagnosed are often not ‘ready’ for traditional aged care services following diagnosis but need information to help them come to terms with the diagnosis, better manage day-today symptoms and have hope. Research studies show that many medical practitioners have difficulty locating or recommending effective post-diagnostic support for their patients.
Forward with Dementia is a new, evidence-based program and website co-designed with people living with dementia, carers and health professionals to provide effective, tailored support for the 12 months following a dementia diagnosis.
The website is divided into three sections, tailored for people with dementia, carers and health professionals. Each section includes easy-to-navigate articles with relevant, current information, tools and practical actions to help them move forward following a diagnosis. There are inspirational stories about how others managed their symptoms to overcome stigma and live positively with dementia, and news items on new dementia drugs, driving (or giving up driving) and more. All pages are downloadable and printable.
Bill Yeats, a person living with younger onset dementia, said, “I wish I had this [website] when I was first diagnosed. It would have given me hope, and the information and support I needed to cope and plan for the future”.
On the health professional page, you’ll find short, practical articles, educational videos, links to webinars, a diagnostic conversation checklist and other tools to help you deliver post-diagnostic support and meet current clinical guidelines. Tools and promotional resources can be downloaded and printed from the website or you can order printed resources for your clinic.
Forward with Dementia is the work of the COGNISANCE project (and was jointly planned and developed by leading researchers from the Universities of NSW, Sydney and Wollongong with colleagues from Canada, Netherlands, Poland and the United Kingdom. Key collaborators include Dementia Australia, Dementia Alliance International, Alzheimer’s Disease International, and the World Health Organisation.
The Forward with Dementia program was funded by the NHMRC and the European Union (EU) Joint Programme – Neurodegenerative Disease Research (JPND), a global research initiative aimed at tackling the challenge of neurodegenerative diseases.
Contact:
Email: forwardwithdementia@unsw.edu.au
Phone: +61 2 9065 7307
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