The work to date - an overview
Chris Lawes has been Chair of the PPI Panel on a programme of work around supporting the navigation of services for dementia care. In this blog post, he briefly describes the work to date and gives an overview of how this has changed. The blog post has been written in consultation with and reviewed by members of the Research Team and the PPI Panel. There will be a deeper dive into what we did, why and how, what we found and what we learned in further blog posts.
In this blog post there are links (all of them in blue, bold, and underlined) to click on that will allow you to see more information or diagrams in larger detail.
Phase One: Setting off - September 2019 - August 2021
Discussing with PPI members, the Reference Group and carers to guide our research
Phase One was about building a team. It was also about trying to hear from and describe the problems people with lived experience of dementia and providers of dementia services were facing, and possible solutions that could be explored to guide our research. In the spring and summer of 2021, we talked with some of the care2share carers groups in Oxfordshire. We had discussions within the Reference Group, which included some of the service providers in Oxfordshire and Warwickshire, and in the PPI Panel who were made up of people who were carers of people living with dementia. The Reference Group and PPI Panel also reviewed and commented on each other’s discussions. Table 1 summarises the main themes that emerged from these discussions. They were that services were fragmented, a maze, unequal, ever-changing and difficult to access. What was needed was information that was accessible, in an appropriate format and up-to date. These initial discussions suggested that an intervention in the Oxfordshire and/or Warwickshire region could help improve the wellbeing of people living with dementia and their carers, and that developing an in-depth understanding underlying issues, as well as how to design and implement an appropriate intervention merited research.
A piece of research
During this Phase a piece of research was undertaken by the Research Team in which 20 semi-structured interviews were undertaken with people who had lived experience of dementia in Oxfordshire and Warwickshire to explore these issues in depth. The results will be written about in a future blog post but, in general, Rene and the Research Team report that they support the conclusions drawn from all these consultations and provided deeper insights concerning specific issues and challenges related to the navigation of dementia care services in the Oxfordshire and Warwickshire regions (see Table 1 below).
Table 1. Phase One – problems found, what is needed, and what could we do - from discussions with PPI members and carers to guide our research.
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A. Problems identified System level
Individual level
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B. What is needed? System level
Individual level
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C. What could change? System level
Individual level
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Phase Two: September 2021 - July 2022
In October 2021, a funding proposal was developed and submitted to a national research programme for a substantial research programme. This was pulled together by the research team under a very tight deadline. The proposal was to develop a toolkit to help people map services, which could then be updated locally. After a wait of four months, we heard that the research bid had not been successful. After a miserable few weeks a meeting was held to consider feedback from the funding committee.
Given the feedback, it was decided in May 2022 that a more bottom-up approach was needed, which would better involve local communities. It was felt that a Participatory Action Research (PAR) approach would be appropriate. In the meantime, Rene secured some funding from Warwick Business School for support with transcribing the 20 interviews. It also funded the PPI Panel to develop and run a workshop about the usefulness of visual approaches between May-July 2022.
During my time, as Chair of the PPI Panel, I also spoke to a variety of stakeholders to explore their perceptions of the usefulness of visual methods with people with lived experience of dementia. I sought their views on how this might help address access to and navigation of services. There was a positive response; further details to come in a blog post “Exploring how visual approaches could make a difference to experiences of care for people living with dementia”.
Phase Three: September 2022 - July 2023
With the shift to a PAR approach – with its emphasis upon communities identifying problems, carrying out action research and developing capacity to maintain and improve services – an application was made to the University of Warwick Participatory Research Fund. Work was undertaken to help understand how information was transmitted between Dementia Advisors and people living with dementia and their family carers. Using a PAR informed approach, a two-day workshop was held in June 2023 with people with lived experience of dementia, Dementia Advisors, health and social care service commissioners, academics, and other service providers to identify problems, suggest solutions that could be undertaken and initiate a plan for a new funding proposal, which is now under development. One of the lessons from the earlier, unsuccessful research funding application was a lack of evidence of PPI involvement. Phase three gave us time and space for thorough PPI, to underpin the design and submission of a new research application.
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