Living with dementia: could life story work help?

Posted on 1 September 2016

A pioneering study led by researchers at the University of York’s Social Policy Research Unit (SPRU) shows that life story work has the potential to help people with dementia.

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 or, increasingly, in music, film and multi-media formats.

The study found that many health and social care services in England now use life story work, but the ways in which they do this vary considerably.

Researchers compiled evidence on life story work in dementia care through a systematic literature review, in addition to listening first-hand to views of people with dementia, family carers and professionals through a series of focus groups.

Full-scale evaluation

Conducting a national survey of family carers and dementia service providers, along with an in-depth analysis of life story work in six care homes and four hospital wards, researchers tested the feasibility of doing a full scale evaluation of life story work in these settings.

The study concluded that life story work has the potential to help people with dementia, but a full scale evaluation is needed.

Kate Gridley, Research Fellow in York’s SPRU and Lead Researcher on the study, said: “People with dementia and their family carers have played a pivotal role in identifying nine key features of good practice in life story work. This includes not assuming that a person wants to do life story work, and respecting the person's wishes about what goes into their life story and who will see it. However, these good practice approaches were not always followed.

“The study identified some improvements in staff attitudes towards people with dementia in care homes where they introduced life story work, and improvements in quality of life for some of the people with dementia, although the numbers were small.

“The cost of delivering life story work is relatively low, and staff felt that doing life story work encouraged interactions with family, and helped staff to get to know the person with dementia.”

Advisory network

The involvement of people with dementia and their carers was crucial to the study. A network of advisers informed the project design and interpretation of findings. Research partners included Dementia UK, Innovations in Dementia CIC, the Life Story Network CIC, Anchor Trust, Pennine Care NHS Foundation Trust, the University of York Department of Health Sciences, the Hull York Medical School and the University of Hull.

The study was funded by the National Institute for Health Research Health Services and Delivery (NIHR HS&DR) Programme, and the final report is now available at: http://www.journalslibrary.nihr.ac.uk/hsdr/volume-4/issue-23

Further information:

- This project was funded by the National Institute for Health Research Health Services and Delivery Research Programme. The views and opinions expressed here, in the final report and in any other outputs are those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.

- 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.www.netscc.ac.uk/hsdr/

- 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 (www.nihr.ac.uk).

- For more information on the University of York’s Social Policy Research Unit and the Department of Health Sciences, visit: http://www.york.ac.uk/spru/ and http://www.york.ac.uk/healthsciences/

- For further information on the Hull York Medical School, visit: http://www.hyms.ac.uk/

- More information on Innovations in Dementia CIC at http://www.innovationsindementia.org.uk/

- More information on Dementia UK http://www.dementiauk.org/

- More information on Anchor Trust at http://www.anchor.org.uk/Pages/home.aspx

- More information on Pennine Care NHS Foundation Trust at http://www.penninecare.nhs.uk/

- More information on Life Story Network CIC at http://www.lifestorynetwork.org.uk/

- More information on the University of Hull http://www2.hull.ac.uk/

- More information about Department of Health funded dementia research http://www.nihr.ac.uk/research/Pages/Dementia.aspx

- Life Stories featured in the Guardian, to read more visit: https://www.theguardian.com/social-care-network/2016/apr/25/life-story-work-dementia-care?CMP=share_btn_link