Experiences of dementia diagnosis and post-diagnosis support: a co-production approach

This project follows on from the ‘Getting Good Support’ study, an ESRC
funded examination of communicational support practices between staff and people with dementia
(due to finish at the end of May 2018). A group of co-researchers with dementia (‘The Forget Me
Nots’) were supporting the project, and in doing so started to develop their own research ideas and
questions. These centred around exploring and understanding people’s experience of receiving a
diagnosis, recognising the ‘diagnostic moment’ as the start of a new journey.
The Forget Me Nots argue that being diagnosed with dementia comes with a steep learning curve,
including the need to learn new skills and navigate unfamiliar health and social care systems. They
strongly feel that that people with dementia can contribute to improving practice and support for
people receiving a diagnosis through peer-support, ideas, and being experts by experience.
Unfortunately, we did not have the time to explore these ideas further in the ‘Getting Good Support’
project. However, as that project comes to an end, we hope to grasp the opportunity to create a
new research program led by engaged, enthusiastic people with dementia into an area which they
see as the most significant, and often overlooked. Whilst academics and policy recognise and
support people with dementia feeding into practice, it is still rare for research into ‘what really
matters’ to be developed from the ground up by people with dementia, for people with dementia.
Our goal is to support the Forget Me Nots to develop their research interests so that they can create
and lead a research project that will both foreground the voices of people with dementia and make
practical suggestions for improving practice.