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Sikes, P.; Hall, M.J. (2018)
Publisher: SAGE Publications
Journal: Dementia (London, England)
Languages: English
Types: Article
Subjects: family members, stigma, identities, children, young onset dementias, young people, Articles
This research used auto/biographical interviews to explore the experiences of 19, 8 to 31 year olds who had a parent with dementia. Thematic analysis revealed challenges occasioned by the master narrative that people with dementia are ‘still’ the same person they were prior to the onset of their condition. While this notion is – rightly – at the heart of person-centered care in dementia services, the ‘still’ discourse conflicts with the experiences of young people. Their accounts suggest that the construction of their parent as the same person is not helpful and that, furthermore, expectations that they will behave and feel towards that parent as they did before are a source of distress in what is already a challenging situation. This paper highlights the need to equip young people with support that acknowledges that their parent may well be drastically different to the Mum or Dad they previously ‘knew’.
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    • Adams, T. (1996). Kitwood's approach to dementia and dementia care: A critical but appreciative review. Journal of Advanced Nursing, 23(5), 948-953.
    • Allen, J., Oybode, J., & Allen, J. (2009). Having a father with young onset dementia: The impact on the well being of young people. Dementia, 8(4), 455-480.
    • Anderson, M., & Asnani, M. (2013). ''You just have to live with it'': Coping with sickle cell disease. Qualitative Health Research, 23(5), 655-664.
    • Baldwin, C., & Capstick, A. (2007). Introduction. In C. Baldwin, & A. Capstick (Eds.), Tom Kitwood on dementia: A reader and critical commentary (pp. xv-xxvii). Maidenhead, England: Open University Press.
    • Barca, M., Thorsen, K., Engedal, K., Haugen, P., & Johannessen, A. (2014). Nobody asked me how I felt: Experiences of adult children of persons with young-onset dementia. International Psychogeriatrics, 26(12), 1935-1944.
    • Beach, D. (1994). Family care of Alzheimer's victims: An analysis of the adolescent experience. American Journal of Alzheimer's Disease and Other Dementias, 12-19. DOI: 10.1177/ 153331759400900103.
    • Blandin, K., & Pepin, R. (2015). Dementia grief: a theoretical model of a unique grief experience. Dementia. Online first DOI: 10.1177/1471301215581081.
    • Brown, T., & Kleist, D. (1999). Alzheimer's disease and the family: Current research. The Family Journal: Counselling and Therapy for Couples and Families, 7(1), 54-57.
    • Buber, M. (1937/2004). I and thou. (R. G. Smith, Trans.). London, England: Continuum (Original work published 1937).
    • Buber, M. (1947/2014). (Original work published 1947). Between man and man. (R. G. Smith, Trans.). London, England: Routledge.
    • Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health and Illness, 4(2), 167-182.
    • Caddell, L., & Clare, L. (2011). I'm still the same person: The impact of early stage dementia on identity. Dementia, 10(3), 379-398.
    • Couser, T. (2009). Memoir and (lack of) memory: Filial narratives of paternal dementia. In C. S. Todd (Ed.), New essays on life writing and the body (pp. 223-240). Newcastle upon Tyne, England: Cambridge Scholars Publishing.
    • Davis, H., Clovis, C., Ingram, L., Priddy, J., & Tiklenberg, J. (2000). Stages of resolution: Young adult children coping with an Alzheimer's disease parent. Clinical Gerontology, 22(2), 43-58.
    • Denny, S., Morhardt, D., Gaul, J., Lester, P., Anderson, G., Higgins, P., . . . Nee, L. (2012). Caring for children of parents with frontotemporal dementia: A report of the AFTD task force on families with children. American Journal of Alzheimer's Disease and Other Dementias, 27(8), 568-578.
    • Flicker, L. (1997). Dementia reconsidered: The person comes first. BMJ, 318(7187), 880.
    • Fontaine, J., & Oyebode, J. (2014). Family relationships and dementia: A synthesis of qualitative research including the person with dementia. Ageing and Society, 34(7), 1243-1277.
    • Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago, IL: University of Chicago Press.
    • Frank, A. W. (2013). The wounded storyteller: Body, illness, and ethics (2nd ed). Chicago, IL: University of Chicago Press.
    • Freeman, M. (2010). Hindsight. Oxford, England: Oxford University Press.
    • Freeman, M. (2014). The priority of the self. Oxford, England: Oxford University Press.
    • Gelman, C., & Greer, C. (2011). Young children in early-onset Alzheimer's disease families: Research gaps and emerging service needs. American Journal of Alzheimer's Disease and Other Dementias, 26(1), 29-35.
    • Genova, L. (2007). Still alice. New York, NY: Simon & Schuster.
    • Goffman, E. (1963). Sigma: Notes on the management of a spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
    • Goodson, I. (2013). Developing narrative theory: Life histories and personal representation. London, England: Routledge.
    • Goodson, I., & Sikes, P. (2001). Life history research in educational settings: Learning from lives. Buckingham, England: Open University Press.
    • Goodson, I., Sikes, P., Andrews, M., & Atinkin, A. (Eds.) (in press for publication 2016). The Routledge international handbook of life history and narrative. London, England: Routledge.
    • Green, T., & Kleissen, T. (2013). Early onset dementia: A narrative view of the literature. Indian Journal of Gerontology, 27(1), 1-28.
    • Griffin, J., Oyebode, J., & Allen, J. (2015). Living with a diagnosis of behavioural-variant frontotemporal dementia: The person's experience. Dementia. DOI: 10.1177/1471301214568164.
    • Hall, G., Buckwalter, K., & Crowe, J. (1990). Children and memory loss. The American Journal of Alzheimer's Disease and Other Dementias, 5(2), 37-43.
    • Harris, P., & Keady, J. (2009). Selfhood in younger onset dementia: Transitions and testimonies. Aging and Mental Health, 13(3), 437-444.
    • Hedman, R., Hansebo, G., & Ternestedt, S. (2012). How people with Alzheimer's disease express their sense of self. Dementia, 12(6), 713-731.
    • Hutchinson, K., Roberts, C., Daly, M., Bulsara, C., & Kurrle, S. (2015). Empowerment of young people who have a parent living with dementia: A social model perspective'. International Psychogeriatirics. DOI: 10.1017/S1041610215001714.
    • Hutchinson, K., Roberts, C., Kurrle, S., & Daly, M. (2014). The emotional well being of young people having a parent with younger onset dementia. Dementia. DOI: 10.1177/1471301214532111.
    • Johannenssen, A., Engedal, K., & Thorsen, K. (2015). Adult children of parents with young-onset dementia narrate the experience of their youth through metaphors. Journal of Multidisciplinary Healthcare, 8, 245-254.
    • Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham, England: Open University Press.
    • Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia care: Personhood and wellbeing. Ageing and Society, 12(3), 269-287.
    • Lather, P., & Smithies, C. (1997). Troubling the angels: Women Living with HIV/AIDS. Boulder, CO: Westview.
    • Lord, N. (2010). The continued impact of young onset dementia on dependent children as they make the transition into adulthood - A follow up study to Allen, Allen & Oybode (2009). Clinical PsyD Thesis, University of Birmingham, Birmingham.
    • Luscombe, G., Brodaty, H., & Freeth, S. (1998). Younger people with dementia: Diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry, 13, 323-330.
    • McLaughlin, D., & Tierney, W. (1993). Naming silenced lives: Personal narratives and the process of educational change. London, England: Routledge.
    • Malthouse, M. (2011). An autoethnography on shifting relationships between a daughter, her mother and Altzheimer's dementia (in any order). Dementia, 10(2), 249-256.
    • Millenaar, J., van Vliet, D., Bakker, C., Vernooil-Dassen, M., Koopmans, F., Verhey, R., . . . Vught, M. (2014). The experiences and needs of children living with a parent with young onset dementia: Results from the NeedYD study. International Psychogeriatrics, 26(12), 2001-2009.
    • Miller, S. (2004). The story of my father: A memoir. New York, NY: Random House.
    • Mills, C. W. (1970). The sociological imagination. Harmondsworth, England: Penguin (first published in 1959 by Oxford University Press).
    • Nolan, M., Ryan, T., Enderby, R., & Reid, D. (2002). Towards a more inclusive vision of dementia care practice and research. Dementia, 1(2), 193-211.
    • Oakley, A. (1979). From here to maternity: Becoming a mother. Harmondsworth, England: Penguin.
    • Plummer, K. (2001). Documents of life 2: An invitation to a critical humanism. London, England: Sage.
    • Richardson, L. (1990). Narrative and sociology. Journal of Contemporary Ethnography, 19(1), 116-135.
    • Riessman, C. (2008). Narrative methods for the human sciences. London, England: Sage.
    • Roach, P., Keady, J., Bee, P. & 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, 165-174.
    • Roach, P., Keady, J., Bee, P., & Williams, S. (2013). We can't keep going on like this': Identifying story lines in young onset dementia. Aging and Society. DOI: 10.1017/S0144686X13000202.
    • Robertson, S. (1996). Younger people with dementia: The impact on their children. Stirling: University of Stirling, Dementia Service Development Centre.
    • Sabat, S., Johnson, A., Swarbrick, C., & Keady, J. (2011). The 'demented other' or simply a person? Extending the philosophical discourse of Nave and Kroll through the situated self. Nursing Philosophy, 12(4), 282-292.
    • Sikes, P. (1997). Parents who teach: Stories from home and from school. London, England: Cassells.
    • Sikes, P. (2006). Making the strange familiar OR travel broadens the mind: A story of a visiting academic. Qualitative Inquiry, 12(3), 523-540.
    • Sikes, P. (2009). The study of teachers' lives and careers: An auto/biographical life history of the genre. In J. Satterthwaite, H. Piper, & P. Sikes (Eds.), Power in the academy (pp. 169-183). Stoke-OnTrent, England: Trentham Books.
    • Sikes, P. (2013). Editor's introduction: An autoethnographic Preamble. In P. Sikes (Ed.), Autoethnography Sage benchmarks in social science series (Vol. 1, pp. xxi-lii). London, England: Sage.
    • Sikes, P., & Goodson, I. (2003). Living research: Thoughts on educational research as moral practice. In P. Sikes, J. Nixon, & W. Carr (Eds.), The moral foundations of educational research: Knowledge, inquiry and values (pp. 32-51). Maidenhead, England: Open University Press/McGraw Hill Educational.
    • Sikes, P., & Piper, H. (2010). Researching sex and lies in the classroom: Allegations of sexual misconduct in schools. London, England: Routledge.
    • Sparkes, A., & Smith, B. (2002). Sport, spinal cord injury, embodied masculinities and the dilemmas of narrative identity. Men and Masculinities, 4(2), 258-285.
    • Stanley, E. (1993). On auto/biography in sociology. Sociology, 27(1), 41-52.
    • Svanberg, E., Stott, J., & Spector, A. (2010). ''Just helping'': Children living with a parent with young onset dementia. Aging and Mental Health, 14(6), 740-751.
    • Svanberg, E., Stott, J., & Spector, A. (2011). The impact of young onset dementia on the family: A literature review. International Psychogeriatrics, 23(3), 356-371.
    • Tindall, L., & Manthorpe, J. (1997). Early onset dementia: A case of ill timing? Journal of Mental Health, 009638237(6), 3.
    • van Vliet, D., de Vught, M., Bakker, C., Koopmas, R., & Verhey, F. (2009). Impact of early onset dementia on carers: A review. International Journal of Geriatric Psychiatry, 25, 1091-1100 (DOI: 10.1002/gps.2439.
    • Werner, P., Goldstein, D., & Buchbinder, E. (2010). Subjective experience of family stigma as reported by children of Alzheimer's Disease patients. Qualitative Health Research, 20(2), 159-169.
    • Wiltshire, J. (1998). The patient writes back: Bioethics and the pathography. In J. Adamson, R. Freadman, & D. Parker (Eds.), Renegotiating ethics in literature, philosophy and theory (pp. 181-198). Cambridge, England: Cambridge University Press.
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