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Co-designing toolkits to improve post-diagnostic support for people living with dementia, care partners and health and social care professionals (COGNISANCE)

Lookup NU author(s): Dr Marie Poole, Dr Louise Robinson


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© 2021 the Alzheimer's Association.BACKGROUND: COGNISANCE is an international research programme (Australia, UK, Canada, Netherlands, and Poland). In partnership with people living with dementia, informal care partners, health and social care professionals and key national and international dementia organisations and researchers, we have co-designed online toolkits aiming to improve post-diagnostic support for dementia. METHODS: We have worked closely with local working groups representing members from key audiences and a design and marketing agency to run a series of workshops in five countries. The workshops to date have focussed on the key messages, motivators for information seeking, experiences of dementia diagnosis and post diagnostic support, the purpose for toolkits and the tone and branding appropriate for the key audiences for a resource that focusses on the first twelve months post-diagnosis. RESULTS: Co-design workshops were successfully run concurrently in five partner countries. Each country's research team and local working groups remained highly engaged throughout the process. Key motivators for the toolkits led to a focus on a practical and empathetic resource that was tailored to the individual. The toolkits will be a website that has three separate pathways, one for people recently diagnosed with dementia, one for care partners and one for health and social care professionals. These will function to support communicating the diagnosis, post-diagnostic support and planning for the first year post diagnosis. The design and marketing agency have worked closely with research teams and local working groups throughout the co-design process to interpret and build iteratively on each workshop outcome. From this we have successfully produced a generic website that can be tailored in different locations to the three key audiences. CONCLUSION: In the co-design process, representative users identified the need for a practical, empathetic and individually-tailored resource. The toolkit will be a website that has an individual planning tool for the first twelve months following a dementia diagnosis. We are continuing the co-design process to develop a campaign. This will promote the key messages and toolkit, to plan for a life with dementia, ahead of user testing, implementation and evaluation.

Publication metadata

Author(s): Wilcock J, Poole M, Brodaty H, Robinson L, Rait G

Publication type: Article

Publication status: Published

Journal: Alzheimer's & Dementia: The Journal of the Alzheimer's Association

Year: 2021

Volume: 17

Issue: S8

Online publication date: 31/12/2021

Acceptance date: 02/04/2018

ISSN (electronic): 1552-5279

Publisher: Wiley


DOI: 10.1002/alz.054415

PubMed id: 34971290


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