Lessons learnt from delivering the public and patient involvement forums within a younger onset dementia project

Abstract

Including the 'voices' of people living with dementia in a meaningful way is pivotal in shaping local, national and international health and social dementia care research. The Alzheimer's Society (United Kingdom) funded Angela Project (2016-19) was aimed at improving the diagnosis and post-diagnostic support for younger people living with dementia. From the outset, the Project Team ensured that the knowledge and expertise of people living with a younger onset dementia was integral to all decisions taken in respect to overall project design, implementation, and dissemination processes. This was achieved by establishing two project public and patient involvement (PPI) forums; a London PPI Forum and a Bradford-based local PPI Hub. This paper describes how the two groups were formed; the format of the meetings; and the key points learnt by the Project Team from involving people with dementia in all aspects of developing and delivering the Angela Project. Ultimately, the aim is to demonstrate to other researchers in the dementia field how the perspectives of those with a diagnosis can be included in research studies in an active and meaningful way.

Keywords: dementia diagnosis; post-diagnostic; public and patient involvement; support; younger onset dementia.

Figure 1.

A picture taken from our October 2017 PPI meeting with people with young onset dementia, their supporters, the Research Team, the CEO of Dementia UK and Alzheimer’s Society Monitors. The photograph was taken after having obtained full consent from all involved.