‘You have to be mindful of whose story it is’: The challenges of undertaking life story work with people with dementia and their family carers

Abstract

Introduction

Life story work is increasingly being used with people with dementia; this work offers a critical appraisal of some challenges that may be faced in practice.

Design and methods

An in-depth case study analysis was undertaken to understand the experiences of people with dementia, family carers and care staff in using life story work in an NHS Mental Health and Social Care Trust. Data collection included semi-structured interviews, observation, conversations and field notes.

Findings

Private memories were sometimes recalled by the person with dementia that were not for inclusion in any written product; enabling the person with dementia to tell their own life story could be a challenge; quality of the life story books was variable and; at times, life story work may be overused with the person with dementia.

Conclusion

Services should not be deterred from undertaking life story work with people with dementia, but there is a need to adopt a planned approach to its implementation that includes facilitation, education and supervision.

Keywords

Case study dementia family carers life story work qualitative

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References

Adams

Bornat

Prickett

(1996) ‘You wouldn’t be interested in my life, I’ve done nothing.’ Care planning and life history work with frail older women. In: Phillips

Penhale

(eds). Reviewing care management for older people, London: Jessica Kingsley Publishers, pp. 102–116.

Adams

Bornatt

Prickett

(1998) Discovering the present in stories about the past. In: Brechin

Walmsley

Katz

Peace

(eds). Care matters, London: Sage, pp. 27–41.

Appleton

King

(2002) Journeying from the philosophical contemplation of constructivism to the methodological pragmatics of health services research. Journal of Advanced Nursing 40: 641–648.

Bakken

Lerdal

Harding

(2009) Norwegian healthcare workers’ experience with implementing life story work in a nursing home. Klinisk Sygepleje 23: 12–18.

Baldwin

(2006) The narrative dispossession of people living with dementia: thinking about the theory and the method of narrative. In: Milnes

Horrocks

Kelly

Roberts

Robinson

(eds) Narrative memory and knowledge: representations, aesthetics and contexts, Huddersfield: University of Huddersfield, pp. 101–109.

Baldwin

(2008a) Narrative (,) citizenship and dementia: the personal and the political. Journal of Aging Studies 22: 222–228.

Baldwin

(2008b) Towards a person-centred ethic in dementia care: doing right or being good? In: Downs

Bowers

(eds). Excellence in dementia care: research into practice, Maidenhead: McGraw Hill Education, pp. 103–118.

Batson

Thorne

Peak

(2002) Life story work sees the person beyond the dementia. Journal of Dementia Care 10: 15–17.

Brooker, D. (2010). The VIPS model and the importance of Life Story Work. Presentation to the first national Life Story Work conference, February 12, Leeds.

10.

Caron

Hepburn

Luptak

Grant

Ostwald

Keenan

(1999) Expanding the discourse of care: family constructed biographies of nursing home residents. Families, Systems and Health 17: 323–335.

11.

Clarke

Hanson

Ross

(2003) Seeing the person behind the patient: enhancing the care of older people using a biographical approach. Journal of Clinical Nursing 12: 697–706.

12.

Crisp

(1995) Making sense of the stories that people with Alzheimer’s tell: a journey with my mother. Nursing Inquiry 2: 133–140.

13.

Day

Wills

(2008) A biographical approach. Nursing Older People 20: 22–24.

14.

Department of Health (2009) Living well with dementia: a national dementia strategy, London: DH.

15.

Dewing

(2007) Participatory research: a method for process consent with persons who have dementia. Dementia: The International Journal of Social Research and Practice 6: 11–25.

16.

Eisenhardt

(1989) Building theories from case study research. Academy of Management Review 14: 532–550.

17.

Equality and Human Rights Commission (2011) Close to home—an inquiry into older people and human rights in home care, London: EHRC.

18.

Gibson

(1991) The lost ones: recovering the past to help their present, Stirling: Dementia Services Development Centre.

19.

Gibson

(1994) What can reminiscence contribute to people with dementia? In: Bornat

(eds). Reminiscence reviewed, Buckingham: Open University Press, pp. 46–60.

20.

Gibson

(2005) Fit for life: the contribution of life story work. In: Marsall

(ed.) Perspectives on rehabilitation and dementia, London: Jessica Kingsley Publishers, pp. 175–179.

21.

Gibson

Carson

(2010) Life story work in practice: aiming for enduring change. Journal of Dementia Care 18: 20–22.

22.

Guba

Lincoln

(1994) Competing paradigms in qualitative research. In: Denzin

Lincoln

(eds) Handbook of qualitative research, London: Sage, pp. 105–117.

23.

Hansebo

Kihlgren

(2000) Patient life stories and current situation as told by carers in nursing home wards. Clinical Nursing Research 9: 260–279.

24.

Heliker

(1997) A narrative approach to quality care in long term care facilities. Journal of Holistic Nursing 15: 68–81.

25.

Hewitt

(1998) Life-story-books for people with learning disabilities. Nursing Times 94: 61–63.

26.

Hewitt

(2000) A life story approach for people with profound learning disabilities. British Journal of Nursing 9: 90–95.

27.

Keady

Williams

Hughes-Roberts

(2005) Emancipatory practice development through life story work. Changing care in a memory clinic in North Wales. Practice Development in Health Care 4: 203–212.

28.

Keady

Williams

Hughes-Roberts

(2007) Making mistakes: using co-constructed inquiry to illuminate meaning and relationships in the early adjustment to Alzheimer’s disease—a single case study approach. Dementia: The International Journal of Social Research and Practice (Special Issue) 6: 343–364.

29.

Kellett

Moyle

McAllister

King

Gallagher

(2010) Life stories and biography: a means of connecting family and staff to people with dementia. Journal of Clinical Nursing 19: 1707–1715.

30.

Lacey

Luff

(2001) Qualitative data analysis, Sheffield: Trent Focus.

31.

Life Story Network. (2011). http://www.lifestorynetwork.org.uk/knowledge-research/Accessed January 9, 2013.

32.

Lincoln

(2001) Engaging sympathies: relationships between action research and social constructivism. In: Reason

Bradbury

(eds) Handbook of action research: participative inquiry and practice, London: Sage, pp. 124–132.

33.

Manley

McCormack

Wilson

(2008) Introduction. In: Manley

McCormack

Wilson

(eds) International practice development in nursing and healthcare, Chichester: Blackwell Publishing, pp. 1–16.

34.

McKee

Wilson

Elford

Goudie

Chung

Bolton

(2002) Evaluating the impact of reminiscence on the quality of life of older people, Sheffield: Sheffield Institute for Studies on Ageing.

35.

McKeown

Clarke

Repper

(2006) Life story work in health and social care: systematic literature review. Journal of Advanced Nursing 55: 237–247.

36.

McKeown

Clarke

Ingleton

Ryan

Repper

(2010a) The use of life story work with people with dementia to enhance person-centred care. International Journal of Nursing Older People 5: 148–158.

37.

McKeown

Clarke

Ingleton

Repper

(2010b) Actively involving people with dementia in qualitative research. Journal of Clinical Nursing 19: 1935–1943.

38.

Moore

Davis

(2002) Quilting narrative. Using repetitive techniques to help elderly communications. Geriatric Nursing 23: 262–266.

39.

Moya

(2010) Identities on paper. Constructing lives for people with intellectual disabilities in life story books. Narrative Inquiry 19: 135–153.

40.

Murphy, C. (2000). Crackin’ lives: an evaluation of a life story-book project to assist patients from a long stay psychiatric hospital in their move to community care situations. (Unpublished).

41.

National Collaborating Centre for Mental Health (2006) A NICE-SCIE guideline on supporting people with dementia and their carers in health and social care. National Clinical Practice Guideline Number 42, London: British Psychological Society and Gaskell.

42.

Nolan

Hanson

Magnusson

Andersson

(2003) Gauging quality in constructivist research: the Aldre Vast Sjuharad model revisited. Quality in Ageing—Policy, Practice and Research 4: 22–27.

43.

Phinney

(2002) Fluctuating awareness and the breakdown of the illness narrative in dementia. Dementia: An International Journal of Social Research and Practice 1: 329–344.

44.

Ritchie

Spencer

(1994) Qualitative data analysis for applied policy research. In: Bryman

Burgess

(eds) Analyzing qualitative data, London: Routledge, pp. 173–194.

45.

Rodwell

(1998) Social work constructivist research, New York: Garland.

46.

Russell

Timmons

(2009) Life story work and nursing home residents with dementia. Nursing Older People 21: 28–32.

47.

Social Care Institute for Excellence. (2010). Dignity in care SCIE guide 15. At: http://www.scie.org.uk/publications/guides/guide15/index.asp. Accessed on January 9, 2013.

48.

Stake

(1995) The art of case study research, Thousand Oaks: Sage.

49.

Thompson, R. (2009). Realising the potential: developing life story work in practice. In K. Sanders, & T. Shaw (Eds.), Foundation of nursing studies dissemination series, (Vol. 5, pp. 1–4). London: Foundation of Nursing Studies. http://www.fons.org/resources/documents/Dissemination%20Series/DissSeriesVol5No5.pdf. Accessed on January 9, 2013.

50.

Wills

Day

(2008) Valuing the person’s story: use of life story books in a continuing care setting. Clinical Interventions in Ageing 3: 547–552.

51.

Yin

(2009) Case study research: design and methods 4th edn, Thousand Oaks: Sage.