Report: Life story work with people with dementia: an evaluation
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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.

We hear from networks of practitioners, carers and user groups that life stories are growing in popularity as a tool in the care of people with dementia but there have been no large-scale, rigorous studies of its use. We do not know:

  • to what extent they are being used, in what ways, or to what effect
  • how much it would cost to use life stories as a routine part of dementia care
  • if and why life stories work for different people in different circumstances
  • under what circumstances life story work isn’t as effective.
Aim

To carry out the development and initial feasibility stages of evaluation of a complex intervention – life story work – for people with dementia.

Objectives
  • Develop a theoretical model of life story work (including its potential outcomes)
  • establish core elements of good practice in using and applying the life story work approach
  • benchmark the current use of life story work in dementia services in England against good practice
  • scope the potential effects and costs of using life story work in specialist inpatient and long-term care settings
  • explore the feasibility of formal evaluation of life story work in health and long-term care settings
  • disseminate findings to providers, planners, commissioners and users of dementia services.
Methods
  • A systematic review of literature on life story work with people with dementia
  • a qualitative study using focus groups with people with early stage dementia, carers and professionals
  • a survey of health and social care providers of dementia services and of informal carers
  • two small scale feasibility studies to examine the potential size of outcomes from, and costs of, using life stories in different settings – they will also provide learning on the practical feasibility of formal evaluation of life story work
  • dissemination via a number of routes including a short film, designed and produced with the help of people with dementia and their carers.
Involving people with dementia and those who care for them

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. They will validate findings, using their personal experience to put interpretations in context.

Policy and practice aims

This research will provide dementia care providers, service planners and policy makers with:

  • evidence of the costs and potential outcomes of life story work to inform and help improve decision making about the use of this approach with people with dementia
  • a model of best practice to ensure that, where life stories are used, this produces the best possible outcomes for people with dementia and their carers
  • an accessible film, designed and produced with the help of people with dementia and their carers, to illustrate the outcomes of life story work and core elements of good practice.

This research will provide research planners and commissioners with:

  • an assessment of how it might be possible to formally evaluate the costs and outcomes of life story work with people with dementia.
Advisory board

The project has an advisory board made up of people with relevant expertise. They provide an excellent source of advice and knowledge on current issues and access to professional networks in order to have the maximum effect on services. Members of the board are:

  • Paul Edwards, Head of Training and Practice Development, Bradford Dementia Group
  • Wayne Goddard, Assistant Director Joint Commissioning (Vulnerable People), Commissioning and Strategic Development, Doncaster NHS-CCG
  • Ruth Hannan, Policy & Development Manager, Carers Trust
  • Professor Esme Moniz-Cook, Professor of Clinical Psychology & Consultant Clinical Psychologist, Centre of Dementia Research and Practice
  • Professor Martin Orrell, Professor of Ageing and Mental Health, University College London
  • Nicola Shore, Engagement and Wellbeing Service Manager, Age UK Oldham
  • Graham Stokes, Director of Dementia Care, Bupa Care Services and Honorary Visiting Professor of Person-Centred Dementia Care, University of Bradford
  • Rachel Thompson, Dementia Lead, Royal College of Nursing
  • Stephen Wey, Senior Lecturer, Faculty of Health and Life Sciences, York St John University

Also advising the project is a virtual advisory network of 10 advisers including people with dementia and family carers (as detailed above). Two representatives attend Advisory Board meetings to feed their views into the discussions:

  • Jean Tottie, Chair and Director of the Life Story Network and Former Carer
  • Steve Milton, Director, Innovations in Dementia

For more, visit :http://php.york.ac.uk/inst/spru/research/summs/life.php