Reflections on PPI from the 'Action on Living Well: Asking You' advisory network of people with dementia and carers as part of the IDEAL study

Dementia (London). 2018 Nov;17(8):1035-1044. doi: 10.1177/1471301218789309.

Abstract

This article describes the work of the 'Action on Living Well: Asking You' group - an involvement group of people with dementia and carers attached to the IDEAL research study. The article describes the work of the group, the methods that have helped them to stay involved and people's perspectives on their experiences of being involved and the impact it has had, for themselves and others. The article has been written following a reflective piece of work with the 'Action on Living Well: Asking You' group to review and remember the work of the past four years. An accompanying film brings to life the work and activities of the group, available at www.idealproject.org.uk/mclass/.

Keywords: carer; co-production; dementia; patient and public involvement; research design.

MeSH terms

  • Caregivers / psychology*
  • Community Participation*
  • Dementia / psychology*
  • Humans
  • Quality of Life*
  • Research*
  • Social Networking*