Supporting Excellence in End of life care in Dementia (SEED programme): RP-PG-0611-20005

Background Dementia is the most common cause of death in women aged over 65 years. Research showed that people with dementia receive poorer end of life care (EOLC) compared to those with cancer. Aim The overall aim of our programme was to support professionals to deliver good quality, community-based care towards, and at, the EOL for people living with dementia and their families. Design and methods The SEED programme comprised six separate and interlinked workstreams (WSs). WS1: Existing guidance and appropriate outcome measures: systematic reviews and a national e-survey; a Q-sort study with people with dementia and family carers (n=57) explored person-centred outcomes for EOLC. WS2: Exploring good quality EOLC in dementia: qualitative methods (119 interviews, 12 focus groups and 256 hours of observation) were used to seek the views of national experts, service managers, frontline staff, people with dementia and family carers. WS3: SEED intervention development: co-design methods with key stakeholders facilitated intervention development using new data and existing literature. WS4: SEED intervention pilot study: a cluster design was used to assess the feasibility and acceptability of recruitment and retention; outcome measures and our intervention. Four GP practices were recruited in North East England; two were allocated to the intervention, the others provided usual care. Patient recruitment was via GP dementia registers. Outcome data were collected at baseline, four, eight and 12 months. A process evaluation explored intervention delivery. WS5: Economic modelling studies: The potential value of the SEED intervention was assessed using a contingent valuation survey of the general public (n=1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost-benefit analysis. WS6: Commissioning of EOLC in dementia: a narrative review of policy and practice literature combined with in-depth interviews with a national sample of service commissioners (n=20). Results Currently dementia care and EOLC are commissioned separately. Examples of national good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good EOLC in dementia namely: timely planning discussions; recognising EOL and providing supportive care; co-ordinating care; effective working with primary care; managing hospitalisation; continuing care after death and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, Dementia Nurse Specialist (DNS) intervention with a care resource kit to help the DNS improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders; being located in general practice was considered particularly beneficial. None of our outcome measures were suitable as the primary outcome measure for a future trial. The contingent valuation showed that the SEED intervention was valued with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs but these may be offset by the value placed on the SEED intervention by the general public. Limitations The biggest challenge to the successful delivery and completion of this research programme was the constantly changing policy and care landscape at both national and local levels. A major limitation for a future trial is the lack of valid and relevant outcomes to measure the effectiveness of new interventions to improve EOLC in dementia. Conclusions Our DNS intervention was acceptable, feasible and integrated well with existing care; importantly it was highly valued by all stakeholders, professionals in addition to people with dementia and their families. It is unlikely to reduce costs of care but likely to improve the wellbeing of people with dementia and their families.