Abstract
The Central Coast Dementia Alliance (the Alliance) formed in 2017 when it was evident that there was a lack of understanding of dementia, support and guidance for those living with dementia, their families, friends and carers on the Central Coast, NSW, Australia. The Alliance is made up of local community members with a lived experience of dementia, members from a number of healthcare organisations such as hospital and community government services, private primary health organisations, and disability and support services.
One of the aims of the Alliance is to Raise Awareness and Understanding of Dementia which led to the initiative to create localised guides, one aimed at the Central Coast community and another for Central Coast clinicians. A working group was formed, and guides were co-designed by people with a lived experience of dementia, and a multidisciplinary group of care and support providers as well as local council.
These guides provide a one stop shop for all things dementia related, relevant to Central Coast residents. The Central Coast Community Guide for Dementia Services and Support is aimed at people with dementia, their families, friends and carers. The guide was developed in association with the Lived Experience of Dementia Advisory Group (LEDAG) on the Central Coast to ensure that it is user friendly, readable and does not have a heavy focus on old age, given that 65% of people diagnosed with Dementia in NSW in 2022 live in the community. Feedback from the local patient support groups Dementia Cafes was that “…participants were over the moon. They said it was one of the most useful resources they had seen.”
The Central Coast Dementia Services and Support Guide for Health, Aged and Community Members outlines eight stages for Dementia Support from noticing changes in memory, behaviour and thinking, through to palliative care and end of life planning. At each stage there is information provided around assessment tools and contact and referral information for Central Coast services.
To date, there have been 1,300 community guides distributed to Central Coast residents and 400 clinician guides delivered to healthcare providers.
Dementia Australia has also shared this initiative with other Dementia Alliances across Australia to use as a template to create their own localised guides. We have had dementia alliances reach out to the CCDA to explore other ways in which we can work together. The presentation will cover the ways of working which have made this a successful initiative without significant external funding, will outline some of the other successes and plans for ongoing dementia awareness raising activities designed with and by people living with dementia and their families.