Improving Care for People with Dementia: Development and initial feasibility study for evaluation of Life Story Work in Dementia care
Award Number
11/2000/11Programme
Health and Social Care Delivery ResearchStatus / Stage
CompletedDates
2 July 2012 -1 April 2015
Duration (calculated)
02 years 08 monthsFunder(s)
NIHRFunding Amount
£418,166.20Funder/Grant study page
NIHRContracted Centre
University of YorkContracted Centre Webpage
Principal Investigator
Ms Kate GridleyPI Contact
kate.gridley@york.ac.ukWHO Catergories
Development of novel therapiesRisk reduction intervention
Disease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 56 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | 11/2000/11 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20120702 |
| End Date | 20150401 |
| Duration (calculated) | 02 years 08 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | University of York |
| Contracted Centre Webpage | |
| Funding Amount | £418,166.20 |
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. Methods 1. 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. Dissemination We 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.
Plain English Summary
Everybody has a life story. These are rich and varied and can be used to communicate who we are to the people around us. People with dementia sometimes need help to communicate their histories and identities, and ‘Life Story work’ might provide a way for them to do this more easily. Life Story work involves helping people to record aspects of their past and present lives (often in a book or folder) and then using the Life Story book or other product to improve their current and future situation. As well as supporting people with dementia to be heard and recognised as people with unique histories, it has been suggested that Life Story work could help family care givers to uphold their relatives’ personhood, help care staff to see clients with dementia as people with rich and interesting lives, manage behaviour that could be seen as troublesome and improve relationships between all those involved. It is argued that knowing more about a person with dementia as an individual with a unique history can also help services to meet that person’s needs better. If, for example, they know that a man with dementia was once a prisoner of war, they can understand why he becomes very distressed when admitted to a locked ward. Without this understanding, the man who rattles the door may be labelled a ‘wanderer’ because he tries to escape and cowers when approached. There have been no large-scale, rigorous studies of Life Story work and we do not know how much it would cost to use Life Stories as a routine part of dementia care. More fundamentally, we do not know if and why Life Stories work for different people in different circumstances, or under what circumstances they work less well. Finally, while we hear from networks of practitioners, carers and user groups that Life Stories are growing in popularity, we do not know to what extent they are being used, in what ways, or to what effect. This research has five main aims. The first is to improve our understanding of how and in what circumstances Life Stories might work for people with dementia and what good practice looks like. We will do this by speaking to people with dementia, carers and professionals about their experiences of Life Story work as well as bringing together all the research evidence already available on the subject and reviewing it in a systematic way. Our second aim is to find out who currently does Life Story work with people with dementia and whether they use good practice when they do this. We will carry out a national survey of carers of people with dementia through Uniting Carers (a network of carers linked to Dementia UK) and a national survey of service providers through the Life Stories Network. The survey of providers will be designed so that we cover many parts of the dementia journey – from initial assessment of dementia to long-term care. We will analyse the results of both surveys to see where and how Life Stories are currently being used. Thirdly, we will investigate possible outcomes and costs of doing Life Story work in hospitals and care homes by conducting two small scale studies. These will take place in two types of setting: residential care homes and mental health assessment units. In the care homes we will compare outcomes before and after Life Story work starts. In the mental health assessment units we will compare outcomes between units where Life Stories are already used and those where they are not. We will also interview carers and staff, and where possible people with dementia about their experiences of Life Story work in these settings. We will analyse all the information we gather to see if, how and why Life Stories make a difference. At the same time, we will gather information from these settings to understand how much it would cost to build Life Story work into the day to day care of people with dementia here, and estimate what savings could be made if this happened.