Using Patient and Public Involvement to support Empowering Better End of Life Dementia Care (EMBED-Care)
Jane Ward is the Patient and Public Involvement (PPI) chair and a co-applicant on the Empowering Better End of Life Dementia Care (EMBED-Care) Programme. EMBED-Care is a five year, ESRC/NIHR funded programme led by Professor Liz Sampson (UCL) and Professor Catherine Evans (KCL). Jane reflects on her experiences and the contributions made to the programme by the PPI group.
Jane’s story
I started caring for my mum who had dementia in 2005, although we didn’t actually receive the diagnosis until 2007. At first I supported her while working, but gradually I had to reduce my hours and eventually gave up work completely in 2009.
Although we did have some really bad days, on the whole my experience was, I think, much better than most people’s mainly due to Mum’s amazing positivity and sense of humour.
I first got involved in PPI work with the Alzheimer’s Society as it gave me access to research and a better understanding of how to support and care for mum. I felt as though I was taking back some control after previously feeling powerless to the dementia diagnosis.
Towards the end of 2012 Mum started to deteriorate fairly quickly and she died at the beginning of March 2013. I am fairly certain she had a ‘good death’; I had helped her care for my Dad years ago, and she had been emphatic that he should be at home with no medical interference, but a peaceful passing with us next to him, holding him. I was able to give her that same experience.
It’s vital that we understand what is important to our loved ones in their last weeks, days and hours of life, but it is also essential I feel that the families are able to live through the experience with a minimum of regrets. Of course we are going to experience bereavement, but for so many families who experience the death of a loved one who has dementia, there is so much more baggage.
Following Mum’s death I became increasingly involved with research around end of life in dementia; it’s one of the most difficult topics within research, dealing as it is with two of the most taboo subjects; dementia and death.
It’s so important to make sure that the whole family is supported throughout the time they are experiencing dementia, and helped to have those most difficult conversations as early as possible to really understand their loved one’s views and wishes around death.
I was invited to join a focus group considering a partnership between Kings College London and University College London in 2017 from which the EMBED-Care Study was born.
The EMBED-Care Patient and Public Involvement (PPI) group
Our PPI group was set up to advise on the EMBED-Care programme of work, over the course of it’s lifespan.
Our group has great variation, we have some very experienced members who have been involved in several research projects before and some who had no PPI experience at all. This mix has proved invaluable as there are times when the newer members spot something the more experienced members have overlooked, especially when looking at study documents which should be written in plain English!
We also have a variety of experience of dementia. Our group includes people with dementia, including some living alone, as well as ex carers and a range of experience of several different forms of dementia including young onset. We also have a variety of carer relationships – husband and wife, adult children caring for parents and a parent caring for an adult child.
Supporting Doctoral students
From the start, the PPI group realised that the doctoral students had a difficult role in interviewing people affected by dementia about end of life. So the group offered the opportunity for the students to practice on us; to gain confidence but also to get a better feeling for the materials and iron out any issues. This face to face event took place in November 2019 and proved invaluable. We captured the feedback from all involved to inform our future work.
This event also gave us an insight into how powerful the interaction between these two groups could be, and then lockdown and the move to Zoom meetings made it even easier to bring the PPI group and the students together – they have now all presented their work to us at least once – giving them the opportunity to practice presenting to a ‘safe’ lay audience, and to get feedback and some of our insight.
You said, We did
Another really important feature of the PPI work has been our ‘You Said, We Did’ record of the comments and feedback from the PPI group and the research team’s subsequent actions. This record gives the research team a great record of what we have said – and it gives the PPI group a real feel for how important our contribution has been and how it has been valued.
Key activities of the group include:
- Commenting on patient facing documents to increase ease of access for people living with dementia
- Commenting on the public facing website
- Offered direct support to doctoral students outside of scheduled meetings
- Evaluation of the group’s activities and reflections on how to continue to work together
Catherine’s reflections
The PPI group has been instrumental to the progression of the programme, particularly in the PhD student’s development. The PPI members and group are incredibly approachable and eager to support all aspects of EMBED-Care offering a wide range of experiences and expertise. They greatly enhance the relevance of the work for people affected by dementia by working with us to understand what is important, what makes a difference and how can that best be delivered. They make a difference on the impact of the research on clinical care and policy, supporting the dissemination of the work through their links with other organisations and insight into upcoming events and activities.
This blog was written as part of activities funded by the UKRI Participatory Research Fund.
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