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

Jacqueline Parkes*, Mary O’Malley, Vasileios Stamou, Jenny La Fontaine, Jan R Oyebode, Janet Carter

*Corresponding author for this work

Research output: Contribution to JournalArticlepeer-review


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.
Original languageEnglish
Article number147130122211100
Pages (from-to)2103-2116
Number of pages14
Issue number7
Early online date14 Jul 2022
Publication statusPublished - Oct 2022


  • General Social Sciences
  • Sociology and Political Science
  • General Medicine
  • post-diagnostic
  • younger onset dementia
  • Articles
  • dementia diagnosis
  • public and patient involvement
  • support
  • Humans
  • Patient Participation
  • United Kingdom
  • Dementia/diagnosis
  • London


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