1. Using Life Story work to deliver person- centred care 8 th March 2013 Rachel Thompson

2. The policy agenda NICE/SCIE Guidelines on dementia (2006) ‘ By learning about each person with dementia as an individual, with his or her own history and background, care and support can be designed to be more appropriate to individual needs.....' (p71) National Dementia Strategy (DH 2009 p58) NICE Quality Dementia Standards (2010) DH Dementia Commissioning pack (2011) Community based services

3. What is life story work? Individual biographical approach Based on story telling & reminiscence Critical review of life events Identifies present and future wishes Used to assess needs, develop and maintain relationships, promote conversation and pleasurable activity Can take a number of formats

4. The evidence base Basis for individualised, person- centred care Maintains sense of identity, enhances communication & relationships (Carr, Jarvis & Moniz-Cook 2009) Assists in transitions between care environments (Murphy et al 2000) Positive effect on attitudes of staff towards their patients. (McKeown et al 2010, Clarke 2000) Improves relationships with family carers & promotes participatory care (Clarke et al 2003, Kellett et al 2010)

5. The evidence base Improving Care for People with Dementia: Development and Initial Feasibility Study for Evaluation of Life Story Work in Dementia Care (2012-2015) SPRU, University of York People with dementia sometimes need help to communicate their histories and identities. This study will investigate how 'Life Story work' can help people living with dementia to do this, and whether this work can enable services to more effectively meet their needs. It will do this by speaking to people with dementia, their carers, and health care professionals about their experiences of Life Story work, and identifying areas of good practice

6. Portrait of a Life

7. Developing a life story tool Introduction to my life Childhood Working/adult life Significant places, events, people, activities Later life My life now Future wishes

8. FormatBenefitsExamples Life story bookDeveloped collaboratively More detail Encourages life review Dementia UK Caring memories Portrait of a Life CollageCreative Visual Easy access Carr et al (2009) Jarvis (2001) Memory boxSupport reminiscence Visual prompts Tactile cues Age UK Alzheimer's Scotland Dementia web LeafletsSimple and concise Easy access ‘This is Me’ ‘All about Me’ DVD’sVisual stimulation Music /oral prompts Memories Unlimited TechnologyAdaptable (as above) i pads Digital reminiscence Connect for care

10. ‘Getting to know me’ ‘Forget me Not’ ‘Patient passports’

11. Making it a reality Training isn’t enough to change practice (Lintern and Woods 2007) ‘Its not what you know it’s the way that you do it!’ (Fossey 2006) Fossey and James (2008) Evidence based approaches for improving care in care homes.

12. Admiral Nurse Practice Development project 7 clinical areas / 7 Admiral Nurses –3 x older adult mental health assessment –4 x NHS continuing care Life Story training with key participants from each area Support in practice areas Thompson, R. (2010). Realising the potential: Developing life story work in practice. In Sanders, K. and Shaw, T. (Eds), Foundation of Nursing Studies Dissemination Series. Vol.5. No. 5.

13. Outcomes Improved understanding of person with dementia which had informed care delivery Improved relationship & communication between staff and patients Improved relationship between staff and family carers Family carers feeling more involved in care and improved relationship with person who had dementia Support of Admiral Nurse instrumen tal

14. Carer feedback: ‘’Doing life story work with my husband has made a difference to our relationship. I thought we had nothing in common but doing the life story made me realise that we had a lifetime of experience and joy.’’ As we go through life we build up a personal history, with its unique mix of joys and pleasure, sorrows and pains. Our sense of who we are is linked to that history and if we lose that we also lose something else of ourselves.’ (Kitwood 1996)

15. Benefits for staff ‘It enabled us to build up a rapport with family carers as we had something to approach them about’. ‘It gave me an opportunity to see the patient – I feel I understand them so much better and it really helps us all.’

16. Better outcomes in areas with the following characteristics: Strong/consistent leadership Higher ratio of qualified to unqualified staff Context/culture which supports change and communication Other factors Relationship of facilitator with staff Higher level of participation by patients

17. Lessons learnt Life story work can be implemented within in-patient settings with proper consideration to leadership, context and facilitation Careful consideration should be given to appropriateness of format i.e. different formats for different contexts/individuals Life stories must be personalised Life stories are not an end in themselves and are never finished!

18. The secret to successful practice development! 3 key elements: The evidence : research evidence, clinical evidence and patient experience The context : culture, leadership, and evaluation The facilitation : purpose, role, skills and attributes (PARIHS) framework Promoting Action on Research Implementation in Health Services. Rycroft Malone (2004)

19. Tips for doing life story work Assess which tool might be most appropriate Discuss with the individual and family and clarify its use Provide information and examples Agree how the information will be gathered Assess capacity of person Consider the time, place and approach Ensure privacy and protected time Decide on most appropriate approach e.g. structured review, reminiscence Gather information in ‘short bursts’ Agree on how the information will be presented Decide where the information will be kept so that is easily accessible

20. Supporting others Purpose: making the purpose clear to all participants Level: ensuring research can be applied to practice at the level of direct care Learning: supporting learning throughout the process e.g. offering training and support to participants and providing resources Evidence use: using latest evidence to inform developments Creativity: supporting and encouraging creativity by participants in delivery Methods: using methods which encourage participation of stakeholders in planning, implementation and evaluation of work (Manley et al 2010)

21. Further information Dementia UK: http://www.dementiauk.org/information-support/life-story-work/ –Template –Guidance Life Story network http://www.lifestorynetwork.org.uk/http://www.lifestorynetwork.org.uk/ Thompson R (2011) Using life story work to enhance care. Nursing Older People. 23;8;16-21 Caring Memories: http://www.caringmemories.net/http://www.caringmemories.net/ Portrait of a Life: http://www.southwestyorkshire.nhs.uk/quality- innovation/initiatives-projects/portrait-of-a-life/http://www.southwestyorkshire.nhs.uk/quality- innovation/initiatives-projects/portrait-of-a-life/