Co-designed online support for people and their families after a diagnosis of dementia: Forward with dementia

Conference:

SAPC ASM 2022 - UCLan

Talk Code:

2A.6

Presenter:

Jane Wilcock

Twitter:

@jnewilcock, @ForwardDementia, @UKCognisance

Co-authors:

Marie Poole, Louise Robinson, Henry Brodaty, Lee-Fay Low, Meredith Gresham, Isabelle Vedel, Frans Verhey, Joanna Rymaszewska, Greta Rait on behalf of the COGNISANCE team.

Author institutions:

University College London, Newcastle University, University of New South Wales, University of Sydney, McGill University, Maastricht University, Wroclaw Medical University

Problem

Clinical guidelines are available on how to make a dementia diagnosis, communicate the diagnosis and provide post-diagnosis support. However, when given the diagnosis, people living with dementia and their families often report receiving insufficient information and negative experiences of the diagnostic process. Post-diagnostic support is reported to be lacking, not focussing on the patient and their quality of life. Dementia is the most feared health condition in the UK and the second most feared in Australia. Fear and stigma affect help-seeking. GPs report a lack of knowledge, time, skills and confidence in diagnosis, its communication and subsequent care of dementia and they would like more training.

Approach

An international three-year research programme with partners in Australia, UK, Canada, Netherlands, and Poland aimed to develop supports for dementia after diagnosis (Cognisance: co-designing dementia diagnosis and post-diagnostic care). We developed and agreed on a co-design approach and undertook 24 co-design workshops with people living with dementia, families, health care professionals and representatives from the voluntary sector. Through consensus and an iterative approach, we developed and designed, content, tools, and function for a new intervention. This was user tested and is currently being promoted through national campaigns and ongoing evaluation.

Findings

A template website with key content was developed which was then translated, culturally adapted and tailored by each research partner. The local working groups informed all aspects of the development and design. It was important that the resource should be available online and printable, current, practical, and relevant to the user. Personalisation was important and individuals can select and engage with content that is relevant to them and their circumstances. Language, tone, and accessibility for the online resource were essential, particularly for people living with dementia, as was access without the need for individual logins or passwords.

Consequences

Through co-design people living with dementia, families and health care professionals agreed upon the need for evidence-based, practical, empathetic and individually tailored resources after a diagnosis of dementia. We collaboratively developed a tailorable online guide Forward with dementia that has an individual planning toolkit for the first twelve months following a diagnosis to help plan for a life with dementia.

Submitted by:

Jane Wilcock

Funding acknowledgement:

This work is funded by the Alzheimer's Society in the UK