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People with dementia and their carers play key role in new study

Posted on 7 January 2013

People with dementia and their family carers are to play a pivotal role in a pioneering study led by researchers at the University of York into the effectiveness of using Life Stories to influence their care and improve their quality of life. The study has been funded by the National Institute for Health Research Health Services and Delivery (NIHR HS&DR) Programme.

The 30-month study, led by the University of York’s Social Policy Research Unit, will provide an essential evidence base for the technique which has the potential to help many of the 700,000 people in the UK with dementia, as well as the people who care for them.

Everybody has a life story. These are rich and varied and can be used to communicate who we are to the people around us

Kate Gridley

Life Story work involves helping people to record aspects of their past and present lives along with future hopes and wishes, often in a book or folder and, increasingly, in music, film  and multi-media formats. Life Story work may have the potential to improve care for people with dementia in range of settings including hospitals and residential care homes, to support smooth transitions between care settings, and improve quality of life for those with dementia and their carers. The project aims to find out how, and in what circumstances, Life Story work could make a difference. 

Partners in the study include the University of York Department of Health Sciences, the Hull York Medical School, Dementia UK, Innovations in Dementia, Anchor Trust, the Life Story Network, the University of Hull and Pennine Care NHS Foundation Trust.

The involvement of people with dementia and their carers is a key feature of this project - a network of advisers, including five people with dementia and five family carers, will draw on personal experiences to inform the project throughout. Kate Harwood, a family carer involved as an adviser on the project, explained: “When you can’t remember what happened last month, week or even half an hour ago, what can you find to talk about? Life stories with photos and words can be shared together, act as a reminder and gives others insight into the person with dementia. This is why I have become involved in the York University Life Story project and am pleased that family carers and people with dementia are being involved in the project from the very start.”

Researchers will carry out a systematic review of literature on Life Story work and gather qualitative data through focus groups involving people with dementia, family carers and professionals. They will then develop a theoretical good practice model of Life Story work as well as surveying the current use of Life Story work in dementia care across England. Finally, the researchers will assess the potential effects and costs of using the technique in specialist inpatient and long-term care settings, and consider further evaluation.

A short film, designed and created with the help of people with dementia and their carers, will then be produced to showcase the study’s key messages.

Lead researcher Kate Gridley, of SPRU, said: “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 aim to provide care providers, service planners and policy makers with robust evidence of the costs and potential outcomes of life story work to help improve decision making about the use of this approach.”

Funding and disclaimer

This project is being funded by the National Institute for Health Research Health Services and Delivery Research Programme. The views and opinions expressed in any reports and other outputs will be those of the authors and will not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.

Notes to editors:

  • The National Institute of Health Research Health Services and Delivery Research (NIHR HS&DR) programme was established to fund a broad range of research. It builds on the strengths and contributions of two NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which merged in January 2012. The programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services, including costs and outcomes. The programme will enhance the strategic focus on research that matters to the NHS. The HS&DR Programme is funded by the NIHR with specific contributions from the CSO in Scotland, NISCHR in Wales and the HSC R&D Division, Public Health Agency in Northern Ireland.
  • The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website.
  • More information on the Social Policy Research Unit at the University of York at
  • More information on the Department of Health Sciences at York at
  • More information on the Hull York Medical School at
  • More information on Innovations in Dementia at
  • More information on Uniting Carers, part of Dementia UK at
  • More information on Anchor Trust at
  • More information on Pennine Care NHS Foundation Trust at
  • More information on Life Story Network at
  • More information on the University of Hull
  • More information about Department of Health funded dementia research

Contact details

David Garner
Senior Press Officer

Tel: +44 (0)1904 322153

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