Prof Alastair S Macdonald is Senior Researcher School of Design at The Glasgow School of Art (GSA). A product designer by training, his research expertise is in adopting participative co-design approaches to bring together the different research disciplines and stakeholders, to co-develop, prototype and evaluate healthcare interventions. Dr Sandra Neves, also a designer by training, is a Research Fellow at GSA, working on the SEED project below: her thesis was concerned with improving the experience of stroke patients’ mealtimes during hospital rehabilitation.

The presentation will briefly outline the approach and means to co-developing a care plan guide (CPG) which will form part of an end-of-life care (EoLC) intervention for people with dementia (PwD) to be evaluated in a pilot trial. The aim of the CPG is to promote timely planning discussions, encourage decision-making and the maintaining of a personal record of progress with three key plans: 1) the advance care plan (encompassing LPA, advance statement and advance decision to refuse treatment); 2) the will; and 3) the funeral plan.

This CPG is very much being developed as a resource and record for the families and PwD themselves as distinct from a ‘medical’ record. As a consequence it is being iteratively co-developed, using mock-ups and prototypes, involving PwD, family carers, healthcare professionals and dementia nurse specialists in its design, in both paper-based and electronic (app) versions. The co-development approach involving key stakeholders presents certain challenges, benefits and implications, but acknowledges and embodies the needs of all the stakeholders involved in the emotive and challenging scenarios for all involved at this stage of life.

This GSA-led work forms part of the SEED (Supporting Excellence in End-of-life care in Dementia) project supported by a National Institute for Health Research (NIHR) Programme Grant for Applied Research (Grant Reference Number RP-PG-0611-20005) led by Newcastle University (PI Robinson).