Title: Improving care for people with dementia: development and initial feasibility study for evaluation of Life Story work in dementia care
Funder: Department of Health (England)

Abstract: We are proposing the development and initial feasibility phases required for robust evaluation of Life Story work for people with dementia in real-world settings as set out in Medical Research Council guidance (2008). These will elucidate its theoretical underpinnings its current use across England collect data on likely impact and costs and establish the value and feasibility of a future trial of effectiveness and costs.Methods1. Systematic review and realist synthesis of existing published evidence about Life Story work plus evidence from focus groups with people with early stage dementia carers of people with all stages of dementia and professionals to formulate a theoretical model of Life Story work including its potential outcomes and elements of good practice.2. Surveys of health and social care providers and of informal carers to establish who uses Life Story work with which participants and using which aspects of good practice. Two small scale feasibility studies - one with a stepped wedge design in care homes the other a pre-test post-test design in an NHS assessment unit – to examine the potential size of outcomes from and costs of using Life Story work in these settings. Relevant resource inputs will be identified measured and then valued using local or national unit costs to establish the costs of Life Story work relative to other approaches. Using these preliminary data and assuming that we have observed any effects we will create a probability tree for effectiveness of Life Story work in relation to outcomes and then a Markov model of effectiveness and cost-effectiveness of Life Story work. In addition to producing data on potential costs and outcomes of Life Story work These small-scale studies will provide valuable learning on the practical aspects of formal evaluation of Life Story work in different settings and for two different designs. Together with the costs and outcomes data this learning will help to assess whether future formal evaluation of Life Story work would be feasible and worthwhile.The involvement of people with dementia and family carers will be central to the success of this research. They will be involved throughout the project as expert advisers supported by Innovations in Dementia and Uniting Carers. These advisers will help ensure research materials and strategies are fully inclusive and validate findings using their personal experience to put interpretations in context.DisseminationWe will communicate the study findings to service providers commissioners and people who use dementia services through summary reports and a short film designed and produced with the help of people with dementia and their carers. Academic outputs and conference presentations will also be produced along with a four-page lay summary for distribution to the NHS organisations of service users and carers social care providers and other stakeholder groups.


Research activity codes: 1.5 RESOURCES AND INFRASTRUCTURE (UNDERPINNING)
Health categories: MENTAL HEALTH