Blog post #1: The origins of this project
Background to the project/introduction
Chris Lawes has been the Chair of the PPI Panel on a programme of work around supporting the navigation of services for dementia care. In this blog, he describes how his interest in the project stemmed from his personal experience and how the project started.
In this Blog post there are links (in blue and underlined) that you can click on to see more information or diagrams in larger detail.
Grounded in personal experience
One in two people in the UK will have direct experience of dementia, either as a carer or as someone who develops dementia, or both. When my dad developed vascular dementia in the early 2010s my mum, my sisters and I became some of the many people who would navigate services on a daily basis and seek help in a new, ever-changing and confusing world. We didn’t know where and how to find services, who to ask and how to get assistance. Professionals were helpful but we often found they didn’t know who else was involved, and that they lacked information and ways to give us a clear picture of how to navigate and access services. As a family we would often end up co-ordinating services and informing professionals of what was happening in my dad’s care. Towards the end of my dad’s life, we were working with 7 different health, social care and voluntary organisations with over 20 different professionals who were contracted to provide services – most of whom didn’t seem to talk to each other (click the image to enlarge if necessary).
So how did this project start?
My father was diagnosed with dementia in 2011...
Drawing on my professional experiences
In my professional life I had worked with people with learning disabilities and with children with complex needs and their families. It was a similar experience for them then as it was for us with my dad. Over many years, tools and approaches had been developed to overcome these barriers. From my personal experience of my dad’s care, I thought that it would be helpful to try out some of these approaches for people with dementia, their carers, and for the professionals supporting them.
My dad died in 2017. After a year or more, I contacted two of my former supervisors that I had worked with on a project from Cambridge, Dr Alex Komashie and Dr Rene Wiedner (who had since moved to the University of Warwick). I also looked for additional academics who could help, eventually encountering Dr Stephanie Tierney and Dr Anne-Marie Boylan at Oxford University. All agreed to help, with Rene stepping forward to serve as the Principal Investigator. In 2019 a collaborative project was born across the two counties of Warwickshire and Oxfordshire. I had discussed it with my mum and sisters. They were ready for me to share our personal experiences, and they all agreed that they would be happy to do anything we could that might help other families affected by dementia.
Starting out – phase one, 2019 – 2020
Preliminary meetings were held by the research team in the autumn of 2019 and in early 2020. One of the initial activities we undertook was a literature review. Building on this, in the summer of 2020, Rene applied and found money to support a research application. In November 2020, Tamsin Jewell was appointed as a part-time research assistant to assist Rene with interviewing people with dementia and their carers about their experiences of navigating services.
In early 2020, I met with Peter Johnson at Dementia Oxfordshire and he offered his support. We were also joined by two volunteers who had their own experiences of supporting family members with dementia, Tamsin Jewell and Pippa Barrett (click here for further information about the research team 2019-2023). Then the Covid-19 pandemic occurred. Lockdown. Meetings became virtual.
The next step was to pull together a panel of people with lived experience of dementia and a reference group of representatives from the service providers in Oxfordshire and Warwickshire. These groups continue to the present day.
We recruited eight members in early 2021 to a Patient and Public Involvement (PPI) Group by developing a PPI-E leaflet describing the idea of the project and what we hoped that people with lived experience could contribute.
In the spring and summer of 2021, we organised three virtual PPI panel meetings and held virtual meetings with carers groups in Oxfordshire. They were all enthusiastic about the project and gave us many examples of the issues they faced and how this project could make a difference to their lives. We will give more details in future blogs.
At the same time, we recruited representatives of service providers in Oxfordshire and Warwickshire to be part of an advisory Reference Group. This group included Commissioners, a Consultant Psychiatrist for Older Adults Mental Health Care, Managers and Dementia Advisors from commissioned third-sector services, a community nurse from a GP surgery, and an academic dementia expert. Two PPI members also attended each of the three Reference Group meetings and a dialogue developed between the two groups as to the nature of the problems that we were facing and some possible ideas for a way forward. The results of this dialogue will be described in the next blog.