COGNISANCE is an international consortium led by CHeBA that is focused on improving clinicians’ communication of a diagnosis of dementia and provision of effective support to patients and families in the first year following diagnosis. International data collected from surveys, interviews and focus groups during 2020 supported previous findings that communicating a diagnosis of dementia is not universally done well. In Australia, interviews and focus groups with 9 people living with dementia, 17 care partners and 19 health care practitioners found the support following diagnosis was, at best ‘hit or miss’. While there are services, these usually focus on supporting people with functional decline which are often not key needs immediately following diagnosis. Existing services do not routinely promote reablement which could maintain or even improve engagement with life and prevent issues arising from dementia before they occur. Counselling and support from peak bodies was appreciated by people living with dementia and their care partners but long waiting lists indicate that there is simply not enough to go around. People living with dementia and their care partners expressed the need for tools to enable them to planahead. Lack of support was more keenly felt by people living in rural Australia.
Ashley Stevens, Dr Meredith Gresham, Nora Wong
22
COGNISANCE research teams in Australia, Canada, Netherlands, Poland and United Kingdom are working towards changing this situation. Over 2020 we brought together a diverse range of stakeholders in co-design groups to develop a marketing campaign for social change. The campaign champions change of practice to make diagnosis a starting point for an effective plan of support, and to empower people living with dementia and their care partners to take action and to seek and receive support. The overall goal is to tangibly improve their lives in the 12-months following diagnosis. Work in 2020 has resulted in the development of a global campaign “Forward with Dementia”. The campaign is spearheaded with an international website containing practical, action oriented, evidence informed content that speaks directly to people living with dementia, their care partners and health and social care professionals. Local campaigning including webinars and capacity building activities are being planned in each of our participating countries. The website and campaigns will be launched mid-2021.
