28 August 2020

There are many national guidelines across the globe which establish benchmarks for best practice diagnosis and support of people living with dementia. Despite this, people with dementia and their family care partners are often dissatisfied with the process of getting a diagnosis and may also receive limited, if any, post-diagnostic support. Diagnosis itself may be difficult to obtain, with estimates of undiagnosed dementia ranging from 43.3% in the UK to 70.7% in Canada.

Even if a diagnosis is obtained, some medical practitioners worry about distressing their patients and avoid discussing prognosis. This situation is exacerbated by limited availability or knowledge about post-diagnostic support that may assist people with dementia and their families cope, compensate or even improve symptoms and issues that arise in dementia.

COGNISANCE aims to improve the dementia diagnostic process and post-diagnostic support. Our objectives are to co-design and deliver in partnership with people with dementia, family care partners and health care professionals, print or on-line toolkits. Toolkits will provide structured information, tailored to enable health care practitioners to effectively enact national dementia guidelines around diagnostic and post-diagnostic support, and to empower people with dementia and their family care partners to seek the support they require. Toolkits will be delivered using a targeted social marketing campaign in selected regions across Australia, Canada, United Kingdom, the Netherlands and Poland.

We will explore, through surveys and focus groups the experience of diagnosis and post diagnostic support from the perspective of people with dementia, family care partners and health care professionals. From this baseline, we will develop internationally adaptable toolkits supporting guideline implementation.

The survey is available online; there is one specifically for health practitioners if you are interested in sharing your experiences.

With the University of NSW Medicine, School of Psychiatry.

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