Hostname: page-component-8448b6f56d-gtxcr Total loading time: 0 Render date: 2024-04-16T20:02:16.169Z Has data issue: false hasContentIssue false
  • English
  • Français

Sharing stories: a meta-ethnographic analysis of 12 autobiographies written by people with dementia between 1989 and 2007

Published online by Cambridge University Press:  18 December 2009

SEAN PAGE  and
JOHN KEADY
SEAN PAGE*
Affiliation:
Manchester Mental Health and Social Care Trust, and University of Manchester, Manchester, UK.
JOHN KEADY
Affiliation:
School of Nursing, Midwifery and Social Work, University of Manchester/Greater Manchester West Mental Health NHS Foundation Trust, Manchester, UK.
*
Address for correspondence: Sean Page, Manchester Mental Health and Social Care Trust, Laureate House, Wythenshawe Hospital, Southmoor Road, ManchesterM23 9LT, UK E-mail: sean.page@nhs.net
Get access Rights & Permissions [Opens in a new window]

Abstract

People with dementia are finding increasingly creative and diverse ways of making their voice heard in society and one such method is through the publication of autobiographical accounts. Following set inclusion criteria, this meta-ethnographic analysis compares and contrasts the contents of 12 books written by people with dementia and published between 1989 (the year of publication of the first text) and the end of 2007 (the selected cut-off point for inclusion). Of the 12 books, three authors were published twice, five were male, eight were from the United States of America, one was Australian and all nine had a professional background. Eight of the authors had Alzheimer's disease and one had fronto-temporal dementia. The average age of the narrator was 51.5 years (age range 38–61 years). Meta-ethnographic analysis of the 12 books inductively generated five themes that linked each story and these were: (a) awareness of change; (b) experiencing loss; (c) standing up and bearing witness; (d) sustaining continuity; and (e) liberation and death. The importance of reconstructing identity appeared a pivotal process in living with the onset and progression of dementia together with maintaining key social relationships and networks.

Keywords

dementianarrativeyounger peopleautobiographystorytellingmeta-ethnographic analysis
Type
Articles
Information
Ageing & Society , Volume 30 , Issue 3 , April 2010 , pp. 511 - 526
Copyright
Copyright © Cambridge University Press 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Alzheimer's Association 2006. Early Onset Dementia: A National Challenge, a Future Crisis. Alzheimer's Association, Washington DC.Google Scholar
Alzheimer's Disease International 1999. The Prevalence of Dementia. Factsheet 3, Alzheimer's Disease International, London.Google Scholar
Alzheimer's Disease International 2009. Annual Report 2007–2008 Alzheimer's Disease International, London. Available online at http://www.alz.co.uk/adi/pdf/annrep08.pdf [Accessed 12 April 2009].Google Scholar
Alzheimer's Society 2005. Younger People with Dementia: An Approach for the Future. Alzheimer's Society, London.Google Scholar
Alzheimer's Society 2007. Dementia UK: A Report into the Prevalence and Cost of Dementia. Prepared by the Personal Social Services Research Unit (PSSRU) at the London School of Economics and the Institute of Psychiatry at King's College London, for the Alzheimer's Society. Alzheimer's Society, London. Available online at http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2 [Accessed 8 October 2008].Google Scholar
Beattie, A. M., Daker-White, G., Gilliard, J. and Means, R. 2002. Younger people in dementia care: a review of service needs, service provision and models of good practice. Aging and Mental Health, 6, 3, 205–12.CrossRefGoogle Scholar
Beattie, A. M., Daker-White, G., Gilliard, J. and Means, R. 2004. ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community, 12, 4, 359–68.CrossRefGoogle Scholar
Brooker, D. 2006. Person-Centred Dementia Care: Making Services Better. Jessica Kingsley, London.Google Scholar
Bryden, C. 1998. Who Will I Be When I Die? Harper Collins, Sydney.Google Scholar
Bryden, C. 2005. Dancing with Dementia. Jessica Kingsley, London.Google Scholar
Charmaz, K. 1987. Struggling for a self: identity levels of the chronically ill. In Conrad, P. and Roth, J. (eds), Research in the Sociology of Health Care, volume 6, Jai, Greenwich, Connecticut. 283–321.Google Scholar
Clare, L. 2002. Developing awareness about awareness in early-stage dementia. Dementia: International Journal of Social Research and Practice, 1, 3, 295–312.Google Scholar
Davis, R. 1989. My Journey into Alzheimer's Disease: A Story of Hope. Tyndale House, Wheaton, Illinois.Google Scholar
DeBaggio, T. 2002. Losing My Mind: An Intimate Look at Life with Alzheimer's. Free Press, New York.Google Scholar
Department of Health 2001. National Service Framework for Older People: Modern Standards and Service Models. Her Majesty's Stationery Office (HMSO), London.Google Scholar
Department of Health 2008. Transforming the Quality of Dementia Care: Consultation on a National Dementia Strategy. HMSO, London.Google Scholar
Elberling, T. V., Stokholm, J., High, P. and Waldemar, G. 2002. Diagnostic profile of young and middle-aged memory clinic patients. Neurology, 59, 8, 1259–62.Google Scholar
Ferri, C. P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., Hall, K., Hasegawa, K., Hendrie, H., Huang, Y., Jorm, A., Mathers, C., Menezes, P. R., Rimmer, E., Scazufca, M., for Alzheimer's Disease International 2005. Global prevalence of dementia: a Delphi consensus study. The Lancet, 366, 2112–7.Google Scholar
Frank, A. W. 1991. For a sociology of the body: an analytical review. In Feastherstone, M., Hepworth, M. and Turner, B. S. (eds), The Body: Social Process and Cultural Theory. Sage, London, 36–102.Google Scholar
Gubrium, J. R. 1993. Speaking of Life: Horizons of Meaning for Nursing Home Residents. Sage, Newbury Park, California.Google Scholar
Harris, P. B. and Keady, J. 2004. Living with early onset dementia: exploring the experience and developing evidence-based guidelines for practice. Alzheimer's Care Quarterly, 5, 2, 111–22.Google Scholar
Harvey, R. J., Skelton-Robinson, M. and Rossor, M. N. 2003. The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology, Neurosurgery and Psychiatry, 74, 9, 1206–9.CrossRefGoogle ScholarPubMed
Jané-Llopis, E. and Gabilondo, A. (eds)2008. Mental Health in Older People. Consensus Paper. European Communities, Luxembourg. Available online at http://www.ec-mental-health-process.net [Accessed 8 October 2008].Google Scholar
Jorm, A. F., Korten, A. E. and Henderson, A. S. 1987. The prevalence of dementia: a quantitative integration of the literature. Acta Psychiatrica Scandinavica, 76, 5, 465–79.Google Scholar
Keady, J., Williams, S. and Hughes-Roberts, J. 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, 6, 3, 343–64.Google Scholar
Keady, J., Williams, S., Hughes-Roberts, J., Quinn, P. and Quinn, M. 2007. ‘A changing life’: co-constructing a personal theory of awareness and adjustment to the onset of Alzheimer's disease. In Nolan, M., Hanson, E., Grant, G. and Keady, J. (eds), User Participation Research in Health and Social Care: Voices, Values and Evaluation. Open University Press, Maidenhead, UK, 69–88.Google Scholar
Kierkegaard, S. 1987. Either/Or, Part 2. Princeton University Press, Ewing, New Jersey.Google Scholar
Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.Google Scholar
Kramer, M. 2005. What is Narrative? Available online at www.nieman.harvard.edu/narrative [Accessed 8 October 2008].Google Scholar
Lee, J. L. 2003. Just Love Me: My Life Turned Upside Down by Alzheimer's. Purdue University Press, West Lafayette, Indiana.Google Scholar
Manthorpe, J., Iliffe, S. and Eden, A. 2003. Early recognition of dementia by nurses. Journal of Advanced Nursing, 44, 2, 183–91.Google Scholar
McGowin, D. F. 1993. Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's. Dell Publishing, New York.Google Scholar
Mendez, M. F. 2006. The accurate diagnosis of early-onset dementia. International Journal of Psychiatry in Medicine, 36, 4, 401–12.Google Scholar
Mills, M. A. 1998. Narrative Identity and Dementia: A Study of Autobiographical Memories and Emotions. Ashgate, Aldershot, UK.Google Scholar
Mobley, T. 2002. Young Hope. Emerald Falcon Press, Hazelwood, Missouri.Google Scholar
Mobley, T. 2007. Young Hope: The Broken Road. Denver Outskirts, Denver, Colorado.Google Scholar
National Audit Office 2007. Improving Services and Support for People with Dementia. Stationery Office, London.Google Scholar
National Institute for Health and Clinical Excellence/Social Care Institute for Excellence 2006. Dementia: Supporting People with Dementia and their Carers in Health and Social Care. NICE Clinical Practice Guideline 42, National Institute for Health and Clinical Excellence, London.Google Scholar
Noblit, G. W. and Hare, R. D. 1988. Meta-ethnography: Synthesizing Qualitative Studies. Sage, Newbury Park, California.Google Scholar
Plummer, K. 2001. Documents of Life 2: An Invitation to a Critical Humanism. Sage, London.CrossRefGoogle Scholar
Ricoeur, P. 1986. Life: a story in search of a narrator. In Doeser, M. and Kray, J. (eds), Facts and Values. Martinus Nijhoff, Dordrecht, The Netherlands, 34–68.Google Scholar
Roberts, B. 2002. Biographical Research. Open University Press, Buckingham, UK.Google Scholar
Rose, L. 1997. Show Me the Way to Go Home. Elder Books, Forest Knolls, California.Google Scholar
Rose, L. 2003. Larry's Way: Another Look at Alzheimer's from the Inside. iUniverse Inc., New York.Google Scholar
Sabat, S. 2001. The Experience of Alzheimer's Disease: Life Through a Tangled Veil. Blackwell, Oxford.Google Scholar
Sabat, S. and Harré, R. 1992. The construction and deconstruction of self in Alzheimer's disease. Ageing & Society, 12, 4, 443–61.Google Scholar
Schneider, C. 2006. Don't Bury Me, it Ain't Over Yet. AuthorHouse, Bloomington, Indiana.Google Scholar
Steeman, E., Dierckx de Casterlé, B., Godderis, J. and Grypdonck, M. 2006. Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 6, 722–38.CrossRefGoogle ScholarPubMed
Sterin, G. 2002. Essay on a word: a lived experience of Alzheimer's disease. Dementia: International Journal of Social Research and Practice, 1, 1, 7–10.Google Scholar
Taylor, R. 2007. Alzheimer's from the Inside Out. Health Professions Press, Baltimore, Maryland.Google Scholar
Thorne, S., Jensen, L., Kearney, M. H., Noblit, G. and Sandelowski, M. 2004. Qualitative metasynthesis: reflections on methodological orientation and ideological agenda. Qualitative Health Research, 14, 10, 1342–65.Google Scholar
Wattis, J. P. and Curran, S. 2006. Practical Psychiatry of Old Age. 4th edition, Radcliffe, London.Google Scholar
Williams, O., Keady, J. and Nolan, M. 1995. Younger-onset Alzheimer's disease: learning from the experience of one spouse carer. Journal of Clinical Nursing, 4, 1, 31–6.CrossRefGoogle ScholarPubMed
Williams, S. and Keady, J. 2008. Narrative research and analysis. In Watson, R., McKenna, H., Cowman, S. and Keady, J. (eds), Nursing Research: Designs and Methods. Elsevier, Edinburgh, 331–40.Google Scholar
Wimo, A., Jonsson, L. and Winblad, B. 2006. An estimate of the worldwide prevalence and direct costs of dementia in 2003. Dementia and Geriatric Cognitive Disorders, 21, 3, 175–81.Google Scholar