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.
Aims and Objectives
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 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. We will deliver the toolkits though targeted social marketing campaigns to promote behavioural change to improve health care practitioner’s diagnostic habits and provision of support, as well as increase help seeking by people with dementia and care partners. Success of the campaign will be evaluated using the RE-AIM framework. From our experience, we will produce a ‘playbook’ outlining how to deliver similar campaigns in other countries.
The research team consists of an international collaboration lead by Scientia Professor Henry Brodaty, Project Leader, Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney.
The Australian team is:
- Associate Professor Lee-Fay Low, University of Sydney
- Associate Professor Lyn Phillipson, University of Wollongong
- Professor Yun-Hee Jeon, University of Sydney
- Dr Meredith Gresham, Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney,
with research assistants:
- Ms Lauren King, UNSW Sydney
- Dr Cindy Kok, UNSW Sydney
- Ms Pauline Beard, University of Sydney
- Ms Tanya Duckworth, University of Sydney
The international project team lead investigators are:
- Professor Isabelle Vedel, McGill University, Canada
- Professor Frans Verhey, Maastricht University, Netherlands
- Professor Greta Rait, University College London, UK
- Professor Dame Louise Robinson, Newcastle University, UK
- Professor Joanna Rymaszewska, Wroclaw Medical University, Poland
International project collaborators are:
- Kate Swaffer, Dementia Alliance International
- Paola Barbarino, Wendy Weidner Alzheimer’s Disease International
- Tarun Dua, Dr Katrin Seeher, World Health Organisation
Dr Meredith Gresham
COGNISANCE Coordinator, CHeBA (Centre for Healthy Brain Ageing), UNSW Medicine
The EU Joint Programme – Neurodegenerative Disease Research (JPND) is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases - www.jpnd.eu