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Nobody asked me how I felt: experiences of adult children of persons with young-onset dementia

Published online by Cambridge University Press:  15 January 2014

Maria Lage Barca ,
Kirsten Thorsen ,
Knut Engedal ,
Per Kristian Haugen  and
Aud Johannessen
Maria Lage Barca*
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
Kirsten Thorsen
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway Faculty of Health Science, Buskerud University College, Drammen, Norway
Knut Engedal
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
Per Kristian Haugen
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
Aud Johannessen
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
*
Correspondence should be addressed to: Maria Lage Barca, Ageing and Health, Norwegian Centre for Research, Education and Service, Vestfold Hospital Trust, Postbox 2136 3103, Tønsberg, Norway. Phone: +47-4684-4366. Email: [email protected].
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Abstract

Background:

There are few studies of young persons (<65 years old) with dementia, and the situation of their children has been a neglected research field. The aim is explore how adult children of a parent with young-onset dementia have experienced the development of their parents’ dementia and what needs they have for assistance.

Method:

Qualitative interviews with 14 informants (aged 20–37 years; 12 daughters, 2 sons) during 2011 were conducted and analyzed thematically.

Results:

The informants experienced great burdens and felt neglected during the development of their parents’ dementia, both by their family and by health and social services. They emphasized a need to be seen as individuals, with their experiences, feelings, and personal needs for assistance. The stresses experienced during the development of parental dementia seemed to increase conflicts in the family. There were variations in reactions between children, depending on age, gender, family structure and relationships, responsibilities, personal relations with both parents, and whether there was an adult primary caregiver. The length of time living together with the parent with dementia seemed to increase the stress and burden to the children. They expressed a great need for information and support.

Conclusion:

The findings strengthen the notion of the need for family-oriented support, combined with person-centered care for the children according to their needs. In addition, group meetings and contact with other young people in the same stage of life could be of interest for some.

Keywords

Experiencesneedschildrenparents with young-onset dementiahealth promotionhealth and social servicessupport
Type
Review Article
Information
International Psychogeriatrics , Volume 26 , Special Issue 12: young onset dementia , December 2014 , pp. 1935 - 1944
Copyright
Copyright © International Psychogeriatric Association 2014 

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References

Allen, J., Oyebode, J. R. and Allen, J. (2009). Having a father with early onset dementia: the impact on well-being of young people. Dementia, 8, 455–480.Google Scholar
Arai, A., Matsumoto, T., Ikeda, M. and Arai, Y. (2007). Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared with those with late onset dementia. International Journal of Geriatric Psychiatry, 22, 1255–1261.CrossRefGoogle ScholarPubMed
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 & Mental Health, 6, 205–212.CrossRefGoogle Scholar
Cairns, R. B. (1979). Social Development: The Origins and Plasticity of Interchanges. San Francisco: Freeman.Google Scholar
Cairns, R. B. and Cairns, B. D. (1998). Life Lines and Risks: Pathways of Youth in Our Time. New York: Cambridge.Google Scholar
Corbin, J. and Strauss, A. (2008). Basics of Qualitative Research. Los Angeles: Sage Publications Ltd. Google Scholar
Gausdal, M. (2012). ONE SIZE passer ikke alle! Behov for skreddersydde tilbud til yngre personer med demens. Tønsberg: Forlaget Aldring og helse.Google Scholar
Gelman, C. R. and Greer, C. (2011). Young children in early-onset Alzheimer's disease families: research gaps and emerging service needs. American Journal of Alzheimer's Disease & Other Dementias, 26, 29–35.Google Scholar
Hagestad, G. (1990). Social perspectives on the life course. In Binstock, R. H. and George, L. (eds.), Handbook of Aging and the Social Sciences (3rd edn, pp. 151–168). New York: Academic Press.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 & Psychiatry, 74, 1206–1209.CrossRefGoogle ScholarPubMed
Haugen, P. K. (2004). Yngre personer med demens og deres familie “Hjelpeapparatet er mangelfullt og tar ikke ansvar” DEMENS, 8, 20–23.Google Scholar
Haugen, P. K. (2006). En må selv være pådriver: tilbud og mangel på tilbud til yngre personer med demens. In Krüger, E. R. M. (ed.), Evige utfordringer: helsetjenester og omsorg for eldre: Et festskrift til Knut Engedal på 60-års dagen (pp. 46–62). Tønsberg: Forlaget Aldring og helse.Google Scholar
HOD. (2009). Love om pasientrettigheter. Oslo: The Norwegian Ministry of Health and Care Services. Available at: http://www.regjeringen.no/nb/dep/hod/tema/pasientinformasjon/the-act-of-2-july-1999-no-63-relating-to.html?id=229533; last accessed 24 November 2013.Google Scholar
HOD. (2011). Loven om kommunale helse og omsorgstjenester. Oslo: The Norwegian Ministry of Health and Care Services. Available at: http://www.lovdata.no/all/tl-20110624-030-001.html; last accessed 24 November 2013.Google Scholar
Johannessen, A. (2012). Dementia and Public Health – With Focus on Access to Society. Gothenburg: Nordic School of Public Health NHV. 2012: 6.Google Scholar
Kindermann, T. (2003). Children's relationships and development of person-context relations. In Valsiner, J. and Connolly, K. J. (eds.), Handbook of Developmental Psychology. London: Sage Publications.Google Scholar
Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Milton Keynes: Open University Press.Google Scholar
Kjällman-Alm, A., Norbergh, K. G. and Hellzen, O. (2013). What it means to be an adult child of a person with dementia. International Journal of Qualitative Studies on Health and Well-being, 8, 21676.CrossRefGoogle ScholarPubMed
McCormack, B. (2001). Negotiating Partnerships with Older People. A Person-Centered Approach. Basingstoke: Ashgate.Google Scholar
McCormack, B. and McCane, T. (2010). Person-Centered Nursing. Theory and Practice. Oxford: Wiley-Blackwell.Google Scholar
Rosness, T. A., Haugen, P. K., Passant, U. and Engedal, K. (2008). Frontotemporal dementia – a clinically complex diagnosis. International Journal of Geriatric Psychiatry, 23, 837–842.Google Scholar
Skovdal, K. et al. (2007). Yngre personer med demenssjukdom och närstående till dessa personer. En kunnskapssammansettning. Institutet for utveckling av metoder i socialt arbete. No. 112-1. Stockholm: Socialstyrelsen. (The National Board of Health and Welfare).Google Scholar
Stratton, P. (2003). Contemporary families as contexts for developments. In Valsiner, J. and Connolly, K. J. (eds.), Handbook of Developmental Psychology (pp. 333–357). London: Sage Publications.Google Scholar
Stroebe, M. and Schut, H. (1999). The dual process model of coping with bereavement: rationale and description. Death Studies, 23, 197–224.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, 740–751.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, 356–371.Google Scholar
Valsiner, J. (2000). Culture and Human Development. London: Sage Publications.Google Scholar
van Vliet, D. (2012). Young Onset Dementia, Characteristics and Impact. Maastricht: Neuropsych Publishers.Google Scholar
Wang, X., Shen, Y. and Chen, W. (2013). Progress in frontotemporal dementia research. American Journal of Alzheimer's Disease and Other Dementias, 28, 15–23.Google Scholar