Enrich Blog

Incorporating Patient and Public Involvement (PPI) into Dementia Research: Alzheimer’s Society Research Network & the DCM™ EPIC trial

Guest Blog written by Alys Griffiths, Research Fellow, Leeds Beckett University on Wednesday June 27, 2018

The Dementia Care Mapping (DCM™) Enhancing Person-centred care in Care Homes (EPIC) clinical trial aimed to understand whether DCM™ reduced behaviours that are often associated with agitation for people living with dementia in care homes.

In order to fully understand the experiences of people living in care homes, a Lay Advisory Group was set up to advise the research team. This included people with first-hand experience of dementia, such as someone living with dementia, a relative of someone living with dementia, or someone working in the care sector.

Sue FortescueSue Fortescue was one of these individuals. Speaking about her experiences, Sue stated: 
Both my parents had dementia, first my mother, who also had Huntington’s Disease, then my father [Wing Commander Dennis Fortescue RAF (Retd)], who developed vascular dementia. I felt very unempowered as their illnesses progressed and I found that one way of making me feel that I could be useful and add value was by joining the Alzheimer’s Society Research Network.  My mother passed away in 1999. By 2012, it became clear that my father could no longer live independently at home so I found a care home near where he lived – and the carers were qualified to conduct DCM™. I was very impressed by the person-centred approach inherent in DCM™. Members of the Research Network are offered the opportunity to monitor various projects and, when I read about the EPIC project, I jumped at the opportunity.”

The research team benefitted not only from the experiences of lay advisors, but their enthusiasm for the project. At the beginning of the project, this included reviewing documents to be read by people with dementia, their families, and care home staff, to ensure that the materials would be easily understood. 

However, the team hit a bump in the road when the researcher responsible for the group moved institution halfway through the trial, leading to the Lay Advisory Group fizzling out. I took over with 18 months left of the trial. 

At this time, the group felt that they had not really had much engagement and had not been asked to contribute much, despite being incredibly passionate about the research area. There were also some concerns that their involvement was just tokenistic. This led to a change in how the group operated, where the group were being asked to review documents, to the group designing and developing the content, to then reviewing drafts of these.

As time went on, the group was also responsible for deciding and planning how the findings would be shared with lay audiences, with the research team responding to this, rather than the other way round.

This lead to the group achieving some fantastic outcomes. A letter was written to the funders to discuss the impact that the lack of incentives being offered for questionnaire completion has had on the trial. The infographics summarising findings were chosen and designed by the group. The lay summary for the main trial monograph was also written by the group in a meeting.

The message from our group is that lay advisors should have a clear role from the beginning, with a key person who they can contact at any time. Without this, members can feel that their opinions do not matter and that their input is less important than others. Having members who feel valued and able to share their passions has benefits for everyone!

Wing Commander Dennis Fortescue RAF (Retd)

Written by Alys Griffiths, Research Fellow, Leeds Beckett University on Wednesday June 27, 2018
Categories: My Research Project, Setting up a study - Tags: dementia, ppi, research, Leeds

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