Involving people with dementia in healthcare research and practice

Event date: 18 November 2021

Event time: 1:00 pm to 2:15 pm


  • Led by Dr Rosie Ashworth (NHS Tayside), Lynn Flannigan (Healthcare Improvement Scotland), Brenda Friel (Inverclyde Health and Social Care Partnership) and Jill Carson (Alzheimer Scotland)

This webinar will hear from 2 programmes which have involved people with lived experience of dementia. Presenters will discuss the challenges involved in ensuring that people are engaged in a meaningful way, and describe the impact of addressing these challenges.

Engaging Partners in Research in the Neuroprogressive and Dementia Network

  • Dr Rosie Ashworth, NHS Tayside Neuroprogressive and Dementia Network

The Neuroprogressive and Dementia Network is committed to including people with lived experience of neuroprogressive conditions in its work. We recently launched Partners in Research, a patient and public involvement group named by its members. The presentation considers the context of the work, raising awareness of dementia and other neuroprogressive conditions, and outlines ways in which we aim to make our work more accessible. It will also provide a summary of our engagement strategy and how we hope to facilitate public participation and engagement in NHS-based research activities. The presentation will also cover some of the challenges we face in sustaining a participatory research network, and the responsibilities researchers hold in building trust, and addressing misconceptions around the research process.


Inverclyde Dementia Care Co-ordination Programme

  • Lynn Flannigan - Healthcare Improvement Scotland
  • Brenda Friel - Inverclyde Health and Social Care Partnership
  • Jill Carson - Alzheimer Scotland

Focus on Dementia and partners have endeavoured to meaningfully engage people with dementia and their carers throughout each stage of an improvement programme journey, both at national level (regular engagement with the Scottish Dementia Working Group and National Dementia Carers Action Network) and locally (Inverclyde Dementia Reference Group, Your Voice, Carers Centre). This presentation will give examples of different types of engagement and involvement throughout the improvement journey, including:

  • building will and conditions for change
  • understanding the current system
  • developing aim and change theory
  • identifying change ideas, test and refine
  • implementing and sustaining where tested
  • sharing learning and spread

Last Updated: 23 November 2021