Decision aids and Dementia in Wales

We asked Leanne Taylor, our Facilitator in Wales, to reflect on 2022. Leanne’s Facilitator is in Ebbw Vale, Wales, and aims to introduce a decision-aid tool about support for family carers of people with dementia at end of life.

IMPACT Facilitators work within a local organisation, leading an evidence-informed change project. Through close collaboration, facilitators review the evidence, lead local change and evaluate the effectiveness of the changes that take place. Successful findings and outcomes will then be shared with others for replication across the social care sector.

The developing relationship with the CARIAD (Care And Respect In Advanced Dementia) service within Hospice of the Valleys and the wider hospice has been a clear highlight for me. The rapport with the CARIAD service has been easy to form and they have been super welcoming of my role and my presence. It has been easy to ‘slot’ into the team and be treated like a fellow team member who is included in routine internal meetings and updates. They have always been willing to find dedicated time to discuss the project I am introducing to their service and the surrounding evidence base.

From the outset, it was clear to me that they wanted to be accommodating and supportive of the role. Cariad’s initial curiosity about the facilitator role and its purpose was encouraging and led to many insightful, unplanned, and in-depth ‘corridor’ discussions where I was able to gain deep learning about their aims, purpose, practice, challenges, and underlying values. My growing insight in this regard has allowed me to present my work and ideas in thoughtful and sensitive ways that are considerate of the service and its surrounding context.

Untangling the knowledge exchange role has been important to understand what it means in the hospice setting and its value. On paper, it reads easily as “supporting the hospice and staff in their practice of carers of people living with dementia, nearing the end of life”. However, working in a setting where staff have a plethora of knowledge and past practice experience that guides their everyday practice, has meant I’ve been privy to a collective work ethic that is person-centered, bespoke, and dynamic, where practice and decisions occur “on your feet”. It’s therefore been a challenge to master the introduction of new and different knowledge in this context; doing so has meant encouraging a pressured and relatively small staff team to make time to reflect, think and plan new ways of working.

We are working with a specific decision aid too and in addition to scoping out how the tool would sit in other parts of the hospice, I, with the support of the CARIAD staff, am looking at how the tool can be used, presented, and re-framed to complement the service’s strong identity.

I am not sure that they have changed. When I started the role, I was excited about bringing lived experience, practice knowledge and research and evidence into closer contact and more explicit communion, and I am still very passionate about how the Facilitator model can support this process. If anything has changed for me, it has been about how I operationalise the project. Initially, I wanted to gain insight by encountering and supporting a range of staff members, carers, dialogues, and stories. However, the real-world pressures that carers and staff members experience mean that opportunities to reflect, analyse and participate in purposeful collective learning are thin. This means that I have needed to look for depth rather than quantity, where I capitalise on the rich and deep lessons present in the small number of case studies and discussions that my work is supporting, and where I can think about how these lessons can interact with my background research and reading to be made meaningful for the hospice and IMPACT.

I have gained insight into the dementia and care setting in Wales, its strategic priorities and ways of working. I have also learnt about dementia, the challenges that carers confront, and the many national activities and interventions that are taking place to support these groups and tackle their challenges.

In terms of my practice, I have had to learn about and work with real-time experimentation and learning. I have needed to deal with the feeling of working with a model as it develops which is exciting but a little scary!

From my perspective, it would be great for the staff teams and individuals I am working with to engage with the experience of trialing new evidence in practice. I am looking forward to seeing what comes of the process; the creativity that can be revealed and harnessed when reflecting on real-time learning and practice. I also hope that these experiences encourage ongoing curiosity and learning within the hospice, long after my tenure.

My idea of success mirrors that of the hospice. While every voice in this knowledge-sharing process matters, the voices of those with lived experience need to be heard loudly and clearly, and in this case, that is the voice of carers. The Welsh Facilitator project will be successful if carers and staff feel that their needs, ideas, and challenges, have been engaged with, understood, and addressed as a result of this process.

This project and subject matter are unique because it is addressing end of life planning and care for people with dementia, which has not been considered extensively enough in Welsh and national policy. According to Hospice UK and others, generalist social care services tend to designate end-of-life planning and conversations to “specialist” palliative services, while really, this is a conversation that everyone should be engaging in. The piloting of an evidenced tool that is intended to support carers who are supporting people nearing the end of their lives, and talking about the tool with external, non-specialist services, is perhaps going someway to normalising end-of-life conversations.