Improving the end of life care for people with advanced dementia and their informal carers: a method of developing a complex intervention using a whole systems UK wide approach.

Abstract

Complete abstract: FC 16. Background: We aimed to develop a complex intervention to improve end of life care (EOLC) for people with advanced dementia and their carers. We collected data from 4 sources: literature review; qualitative data from health and social care professionals, carers and people with early dementia; quantitative data from people with advanced dementia and their carers; review of UK health and social care policy documents. Method and results: To develop the intervention we synthesised these data. 49 emerging statements were considered in workshops with health and social care professionals across UK to achieve consensus using the RAND Appropriateness Method (RAM) to develop components of the intervention. 1. Prior to workshops we sent invitees the RAM form consisting of 49 statements and asked them to rate these on a scale of 1-9 for appropriateness. 2. At the workshops statements rated as ‘uncertain’ or ‘inappropriate’ were discussed and all 49 items were rated again. 3. Analysis resulted in the retention of 29 statements rated as appropriate. 4. Post workshop attendees were sent the RAM form and asked to rate 29 statements for necessity. All 29 statements were rated as necessary and retained then mapped onto impact theories (Grol 2007) comprised of individual, social interaction, organisational or political/ economic context, and categorised as enablers and barriers for an intervention. Three core intervention components emerged: 1. Integrated systems and approaches to the delivery of careoperational plan 2. Education, training and support for health and social care professionals and carers - utilisation plan 3. Political and economic context dependent on reimbursement and contracting through CCG commissioning. Discussion: The next phase is to pilot components 1 and 2 of the intervention in a naturalistic experiment in one inner city and one suburban locality at different stages of development for services for EOLC for people with dementia and their carers.