A confluence of issues conspires to make dementia one of the most feared conditions, including stigma, difficulty in obtaining diagnosis, lack of timely diagnosis, and when - or if - diagnosis is made. Recent interviews for the COGNISANCE project revealed that clinicians (n=17) may try to ‘soften the blow’ by describing dementia as ‘memory loss’ or ‘cognitive issues’, feeling they have little by way of intervention or hope to offer their patients. People with dementia and family (n=25) told us that following diagnosis there was no clear pathway for support; it was like ‘stepping into a void’.
However, there is a growing body of evidence for interventions that may delay or reduce symptoms and approaches that enable people with dementia to move forward with a diagnosis and live full, meaningful lives. Forward with Dementia is a co-designed program which has collated information, curated links and developed resources on a tailored website. It has also used promotional and educational strategies to improve the way a diagnosis is communicated, and immediate post-diagnostic support is provided. This presentation will give a tour of the website, modelling a co-ordinated approach to keeping people engaged and enabled, not waiting to re-engage at a later stage.
Dr Meredith Gresham is an Occupational Therapist with 35 years of clinical and research experience focussing on improving the lives of people living with dementia and families across a range of residential, hospital and community care settings. She has interests in how modifying the built environment and assistive technology can improve function and independence of people living with dementia. She currently coordinates the 5-country COGNISANCE study that seeks to reframe the way in which a diagnosis of dementia is communicated, and to provide information and actions to support people with dementia and their families to live positively following diagnosis.