Hostname: page-component-848d4c4894-m9kch Total loading time: 0 Render date: 2024-05-18T17:39:13.728Z Has data issue: false hasContentIssue false
  • English
  • Français

‘We can't keep going on like this’: identifying family storylines in young onset dementia

Published online by Cambridge University Press:  16 April 2013

PAMELA ROACH ,
JOHN KEADY ,
PENNY BEE  and
SION WILLIAMS
PAMELA ROACH*
Affiliation:
Department of Family Medicine, University of Alberta, Edmonton, Canada.
JOHN KEADY
Affiliation:
School of Nursing, Midwifery and Social Work, University of Manchester, UK.
PENNY BEE
Affiliation:
School of Nursing, Midwifery and Social Work, University of Manchester, UK.
SION WILLIAMS
Affiliation:
School of Healthcare Sciences, Bangor University, UK.
*
Address for correspondence: Pamela Roach, Department of Family Medicine, University of Alberta, 1702.13 College Plaza, Edmonton, Alberta, T6G 2C8. E-mail: proach@ualberta.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

In this study, we identify the dominant storylines that were embedded in the narratives of younger people with dementia and their nominated family members. By implementing a longitudinal, narrative design underpinned by biographical methods we generated detailed family biographies with five families during repeated and planned research contacts (N=126) over a 12–15-month period between 2009 and 2010. The application of narrative analysis within and between each family biography resulted in the emergence of five family storyline types that were identified as: agreeing; colluding; conflicting; fabricating; and protecting. Whilst families were likely to use each of these storylines at different points and at different times in their exposure to young onset dementia, it was found that families that adopted a predominantly ‘agreeing’ storyline were more likely to find ways of positively overcoming challenges in their everyday lives. In contrast, families who adopted predominantly ‘conflicting’ and ‘colluding’ storylines were more likely to require help to understand family positions and promote change. The findings suggest that the identification of the most dominant and frequently occurring storylines used by families may help to further understand family experience in young onset dementia and assist in planning supportive services.

Keywords

narrativestorylinesyounger onset dementiafamilyfamily biography
Type
Articles
Information
Ageing & Society , Volume 34 , Issue 8 , September 2014 , pp. 1397 - 1426
Copyright
Copyright © Cambridge University Press 2013 

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

Allen, J., Oyebode, J. R. and Allen, J. 2009. Having a father with young onset dementia: the impact on well-being of young people. Dementia: The International Journal of Social Research and Practice, 8, 4, 455–80.Google Scholar
Allen, K. R. 2000. A conscious and inclusive family studies. Journal of Marriage and the Family, 62, 1, 4–17.Google Scholar
Alzheimer's Research Trust 2010. Dementia 2010: The Economic Burden of Dementia and Associated Research Funding in the United Kingdom. Available online at http://www.dementia2010.org/ [Accessed 17 January 2013].Google Scholar
Alzheimer's Society 2005. Younger People with Dementia: A Guide to Service Development and Provision. 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 Kings College London for the Alzheimer's Society. Available online at http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=342 [Accessed 17 January 2013].Google Scholar
American Psychiatric Association 1994. Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). Fourth edition, American Psychiatric Association, Washington DC.Google Scholar
Banks, M. 2007. Using Visual Data in Qualitative Research. Sage, London.Google Scholar
Beach, D. L. 1997. Family caregiving: the positive impact on adolescent relationships. Gerontologist, 37, 2, 233–8.Google Scholar
Brown, A. and Roach, P. 2010. My husband has young-onset dementia: a daughter, wife and mother's story. Dementia: The International Journal of Social Research and Practice, 9, 4, 451.Google Scholar
Charmaz, K. 1983. Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness, 5, 2, 168–95.CrossRefGoogle Scholar
Charmaz, K. 2002. Stories and silences: disclosures and self in chronic illness. Qualitative Inquiry, 8, 3, 302–28.Google Scholar
Crichton, J. and Koch, T. 2007. Living with dementia: curating self-identity. Dementia: The International Journal of Social Research and Practice, 6, 3, 365–81.Google Scholar
Davies, J. and Gregory, D. 2007. Entering the dialogue: marriage biographies and dementia care. Dementia: The International Journal of Social Research and Practice, 6, 4, 481–8.Google Scholar
Davies-Quarrell, V., the ACE Club and Keady, J. 2010. The ACE Approach: promoting well-being and peer support for younger people with dementia. Journal of Mental Health Training, Education and Practice, 5, 3, 41–50.Google Scholar
de Boer, M., Hertogh, C., Droes, R., Riphagen, I., Jonker, C. and Eefsting, J. 2007. Suffering from dementia – the patient's perspective: a review of the literature. International Psychogeriatrics, 19, 6, 1021–39.Google Scholar
Department of Health 2001 a. National Service Framework for Older People. Available online at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4003066 [Accessed 17 January 2013].Google Scholar
Department of Health 2001 b. The Expert Patient: A New Approach to Chronic Disease Management in the 21st Century. Available online at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4006801 [Accessed 17 January 2013].Google Scholar
Department of Health 2005. Everybody's Business. Integrated Mental Health Services for Older Adults: A Service Development Guide. Available online at http://www.nmhdu.org.uk/silo/files/factsheetserviceusersandcarers.pdf [Accessed 17 January 2013].Google Scholar
Department of Health 2009. Living Well with Dementia: A National Dementia Strategy. Available online at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_094058 [Accessed 17 January 2013].Google Scholar
Dewing, J. 2007. Participatory research: a method for process consent with persons who have dementia. Dementia: The International Journal of Social Research and Practice, 6, 1, 11–25.Google Scholar
Egset, A. S. and Myklebust, J. O. 2011. Dementia in the family: two Norwegian case studies. Dementia: The International Journal of Social Research and Practice, 10, 4, 571–85.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. 1975. Mini-mental state: a practical guide for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 3, 189–98.Google Scholar
Freyne, A., Kidd, N., Coen, R. and Lawlor, B. A. 1999. Burden in carers of dementia patients: higher levels in carers of younger sufferers. International Journal of Geriatric Psychiatry, 14, 9, 784–8.3.0.CO;2-2>CrossRefGoogle ScholarPubMed
Garwick, A. W., Detzner, D. and Boss, P. 1994. Family perceptions of living with Alzheimer's disease. Family Process, 33, 3, 327–40.Google Scholar
Gubrium, J. R. 1993. Speaking of Life: Horizons of Meaning for Nursing Home Residents. Sage, Newbury Park, California.Google Scholar
Harré, R., Moghaddam, M. F., Pilerton Cairnie, T., Rothbart, D. and Sabat, S. R. 2009. Recent advances in Positioning Theory. Theory and Psychology, 19, 1, 5–31.Google Scholar
Harré, R. and van Langenhove, L. 1999. Positioning Theory. Blackwell Publishers, Oxford.Google Scholar
Harris, P. B. 2004. The perspective of younger people with dementia: still an overlooked population. Social Work in Mental Health, 2, 4, 17–36.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
Harris, P. B. and Keady, J. 2009. Selfhood in younger onset dementia: transitions and testimonies. Aging & Mental Health, 13, 3, 437–44.Google Scholar
Harvey, R. J., Skelton-Robinson, M. and Rossor, M. 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.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2005. ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia: The International Journal of Social Research and Practice, 4, 1, 7–22.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2007. Sustaining ‘couplehood’: spouses' strategies for living positively with dementia. Dementia: The International Journal of Social Research and Practice, 6, 3, 383–409.CrossRefGoogle Scholar
Hibberd, P., Keady, J., Reed, J. and Lemmer, B. 2009. Using photographs and narratives to contextualise and map the experience of caring for a person with dementia. Journal of Nursing and Healthcare of Chronic Illness, 1, 3, 215–28.Google Scholar
Hibberd, P., Lemmer, B., Keady, J. and Reed, J. 2008. A family centred approach to dementia care. Journal of Dementia Care, 16, 5, 26–7.Google Scholar
Hubbard, G., Downs, M. and Tester, S. 2003. Including older people with dementia in research: challenges and strategies. Aging & Mental Health, 7, 5, 351–62.Google Scholar
Keady, J., Clarke, C. L., Wilkinson, H., Gibb, C. E., Williams, L., Luce, A. and Cook, A. 2009. Alcohol-related brain damage: narrative storylines and risk constructions. Health, Risk and Society, 11, 4, 321–40.Google Scholar
Keady, J. and Nolan, M. 1994. Younger onset dementia: developing a longitudinal model as the basis for a research agenda and as a guide to interventions with sufferers and carers. Journal of Advanced Nursing, 19, 4, 659–69.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
Kelly, A. 2008 a. Forgetting and the memory of forgetting: the material and symbolic role of memory in the intersubjective lives of people with AIDS dementia. Dementia: The International Journal of Social Research and Practice, 7, 4, 451–60.CrossRefGoogle Scholar
Kelly, A. 2008 b. The intentionality of insight: the meanings given to insight in the lived experiences of AIDS dementia. Dementia: The International Journal of Social Research and Practice, 7, 4, 521–44.Google Scholar
Lieblich, A., Tuval-Mashiach, R. and Zilber, T. 1998. Narrative Research: Reading, Analysis and Interpretation. Sage, London.Google Scholar
Lincoln, Y. S. and Guba, E. G. 1985. Naturalistic Inquiry. Sage, Newbury Park, California.Google Scholar
Melbourne Neuropsychiatry Centre 2008. Quality Dementia Care: Understanding Younger Onset Dementia. Available online at http://www.fightdementia.org.au/common/files/NAT/20080400_Nat_QDC_QDC4UnderstandYOD.pdf [Accessed 17 January 2013].Google Scholar
National Institute for Health and Clinical Excellence and Social Care Institute for Excellence 2006. NICE Clinical Guideline 42. Dementia: Supporting People with Dementia and Their Carers in Health and Social Care. Available online at http://www.nice.org.uk/CG42 [Accessed 17 January 2013].Google Scholar
NHS Health Advisory Service 1997. Heading for Better Care: Commissioning and Providing Mental Health Services for People with Huntington's Disease, Acquired Brain Injury, and Early Onset Dementia. HMSO, London.Google Scholar
Nolan, M., Hanson, E., Grant, G., Keady, J. and Magnusson, L. 2007. Introduction: what counts as knowledge, whose knowledge counts? Towards authentic participatory enquiry. In Nolan, M., Hanson, E., Grant, G. and Keady, J. (eds), User Participation in Health and Social Care Research. Open University Press/McGraw Hill, Maidenhead, UK, 1–13.Google Scholar
Nygård, L. 2006. How can we get access to the experiences of people with dementia? Suggestions and reflections. Scandinavian Journal of Occupational Therapy, 13, 2, 101–12.Google Scholar
Page, S. and Keady, J. 2010. Sharing stories: a meta-ethnographic analysis of 12 autobiographies written by people with dementia between 1989 and 2007. Ageing & Society, 30, 3, 511–26.Google Scholar
Papastavrou, E., Kalokerinou, A., Papacostas, S., Tsangari, H. and Sourtzi, P. 2007. Caring for a relative with dementia: family caregiver burden. Journal of Advanced Nursing, 58, 5, 446–57.Google Scholar
Plummer, K. 2001. Documents of Life 2: An Invitation to a Critical Humanism. Sage, London.CrossRefGoogle Scholar
Riessman, C. K. 1993. Narrative Analysis. Sage, Newbury Park, California.Google Scholar
Riessman, C. K. 2008. Narrative Methods for the Human Sciences. Sage, Thousand Oaks, California.Google Scholar
Roach, P. and Keady, J. 2008. Younger people with dementia: time for fair play. British Journal of Nursing, 17, 11, 690.Google Scholar
Roach, P., Keady, J., Bee, P. and Hope, K. 2008. Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice. Reviews in Clinical Gerontology, 18, 2, 165–74.Google Scholar
Roberts, B. 2002. Biographical Research. Open University Press, Buckingham, UK.Google Scholar
Rolland, J. S. 1988. A conceptual model of chronic and life-threatening illness and its impact on families. In Chilman, C. S., Cox, F. M. and Nunnally, E. W. (eds), Families in Trouble: Knowledge and Practice Perspectives for Professionals in the Human Services. Sage, Newbury Park, California, 17–68.Google Scholar
Rolland, J. S. 1994. Families, Illness & Disability. An Integrative Treatment Model. Basic Books, New York.Google Scholar
Ryan, E. B., Bannister, K. A. and Anas, A. P. 2009. The dementia narrative: writing to reclaim social identity. Journal of Aging Studies, 23, 3, 145–57.Google Scholar
Sabat, S. 2002. Surviving manifestations of selfhood in Alzheimer's disease. Dementia: The International Journal of Social Research and Practice, 1, 1, 25–36.Google Scholar
Sabat, S. R., Johnson, A., Swarbrick, C. and Keady, J. 2011. The ‘demented other’ or simply ‘a person’? Extending the philosophical discourse of Ursula Naue and Thilo Kroll through an appreciation of the situated self. Nursing Philosophy, 12, 4, 282–92.Google Scholar
Sandelowski, M. 1991. Telling stories: narrative approaches in qualitative research. Journal of Nursing Scholarship, 23, 3, 161–6.CrossRefGoogle ScholarPubMed
Steeman, E., de Casterle, B. D., Godderis, J. and Grypdonck, M. 2006. Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 6, 722–38.Google Scholar
Strauss, A. L. and Corbin, J. 1998. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage, London.Google Scholar
Svanberg, E., Stott, J. and Spector, A. 2010. ‘Just helping’: children living with a parent with young onset dementia. Aging & Mental Health, 14, 6, 740–51.Google Scholar
Svanberg, E., Stott, J. and Spector, A. 2011. The impact of young onset dementia on the family: a literature review. International Psychogeriatrics, 23, 3, 356–71.Google Scholar
Thompson, D. 2011, Service and Support Requirements for People with Younger Onset Dementia and their Families, Literature Review. Prepared for Alzheimer's Australia NSW. Available online at http://www.sprc.unsw.edu.au/media/File/1Alzheimers_YOD_lit_rev_FINAL_DT_Oct11final.pdf [Accessed 17 January 2013].Google Scholar
Tsunaka, M. and Chung, J. C. C. 2012. Care-givers' perspectives of occupational engagement of persons with dementia. Ageing & Society, 32, 4, 543–60.Google Scholar
Walters, A. H., Oyebode, J. R. and Riley, G. A. 2010. The dynamics of continuity and discontinuity for women caring for a spouse with dementia. Dementia: The International Journal of Social Research and Practice, 9, 2, 169–89.Google Scholar
Weaks, D., Wilkinson, H. and Davidson, S. 2005. Families, relationships and the impact of dementia – insights into the ‘ties that bind’. In McKie, L. and Cunningham-Burley, S. (eds), Families in Society. Policy Press, Bristol, UK, 149–67.Google Scholar
Wilkinson, H. 2002. Including people with dementia in research: methods and motivations. In Wilkinson, H. (ed.), The Perspectives of People with Dementia: Research Methods and Motivations. Jessica Kingsley Publishers, London, 9–24.Google Scholar
Williams, S. and Keady, J. 2006. The narrative voice of people with dementia. Dementia: The International Journal of Social Research and Practice, 5, 2, 163–6.Google Scholar
Williams, T., Dearden, A. and Cameron, I. 2001. From pillar to post – a study of younger people with dementia. Psychiatric Bulletin, 25, 10, 384–7.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.Google Scholar
World Health Organisation (WHO) 2012. Dementia: A Public Health Priority. Available online at http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf [Accessed 17 January 2013].Google Scholar