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The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study

Published online by Cambridge University Press:  14 November 2013

Joany K. Millenaar ,
Deliane van Vliet ,
Christian Bakker ,
Myrra J. F. J. Vernooij-Dassen ,
Raymond T. C. M. Koopmans ,
Frans R. J. Verhey  and
Marjolein E. de Vugt
Joany K. Millenaar
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
Deliane van Vliet
Affiliation:
Alzheimer Center Nijmegen, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands
Christian Bakker
Affiliation:
Florence, Mariahoeve, Center for Specialized Care in Young-Onset Dementia, Den Haag, the Netherlands Department of Primary and Community Care, Center for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands
Myrra J. F. J. Vernooij-Dassen
Affiliation:
Alzheimer Center Nijmegen, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands Department of Primary and Community Care, Center for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands Kalorama Foundation Beek-Ubbergen, the Netherlands Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands
Raymond T. C. M. Koopmans
Affiliation:
Alzheimer Center Nijmegen, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands Department of Primary and Community Care, Center for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands
Frans R. J. Verhey
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
Marjolein E. de Vugt*
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
*
Correspondence should be addressed to: Marjolein de Vugt, Department of Psychiatry and Psychology, School for Mental Health and Neuroscience/Alzheimer Center Limburg, Maastricht University Medical Center, P.O. Box 616 6200 MD, Maastricht, the Netherlands. Phone: +31-43-3877445; Fax: +31-43-3875444. Email: m.devugt@maastrichtuniversity.nl.
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Abstract

Background:

Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.

Methods:

Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.

Results:

The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.

Conclusion:

In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

Keywords

young onset dementiayoung carerschildrenneedssupportimpact
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Special Issue 12: young onset dementia , December 2014 , pp. 2001 - 2010
Copyright
Copyright © International Psychogeriatric Association 2013 

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References

Aldridge, J. and Becker, S. (1993a). Children who care: inside the world of young carers. Journal of Interprofessional Care, 7, 298.Google Scholar
Aldridge, J. and Becker, S. (1993b). Punishing children for caring: the hidden cost of young carers. Children and Society, 7, 376–387.CrossRefGoogle Scholar
Aldridge, J. and Becker, S. (1994). My Child, My Carer: The parents’ Perspective. Loughborough: Loughborough University. Dept. of Social Sciences in association with Nottingham Health Authority and Nottinghamshire Association of Voluntary Organisations.Google Scholar
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, 8, 455–480.CrossRefGoogle Scholar
Barnett, B. and Parker, G. (1998). The parentified child: early competence or childhood deprivation? Child Psychology and Psychiatry Review, 3, 146–155.CrossRefGoogle Scholar
Boeije, H. R. (2005). Analyseren in Kwalitatief Onderzoek: Denken en Doen. Boom onderwijs Den Haag.Google Scholar
Bowlby, J. (1973). Separation: Anxiety and Anger, Attachment and loss, Vol. 2. London: The Hogarth Press and the Institute of Psycho-Analysis.Google Scholar
Dearden, C. and Becker, S. (2004). Young carers in the UK: the 2004 report. London: Carers UK.Google Scholar
Department of Health. (1996). Carers (Recognition and Services) Act 1995; Policy Guidance and Practice Guide. London: Department of Health.Google Scholar
DiCaccavo, A. (2006). Working with parentification: implications for clients and counselling psychologists. Psychology and Psychotherapy: Theory, Research and Practice, 79, 469–478.CrossRefGoogle ScholarPubMed
Elo, S. and Kyngäs, H. (2008). The qualitative content analysis process. Journal of advanced nursing, 62, 107–115.CrossRefGoogle ScholarPubMed
Frank, J. (1995). Couldn't Care More: A Study of Young Carers and Their Needs. London: Children's Society.Google Scholar
Frank, J., Tatum, C. and Tucker, S. (1999). On Small Shoulders: Learning From the Experiences of Former Young Carers. London: Children's Society.Google Scholar
Friese, S. (2012). Atlas. Ti 7 User Guide and Reference. Berlin: Atlas Scientific Software Development. Available at: http://www. atlasti. com/uploads/media/atlasti_v7_manual_02. pdf; last accessed 23 October 2012.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 and Other Dementias, 26, 29–35.CrossRefGoogle ScholarPubMed
Greenberg, J. S., Seltzer, M. M., Krauss, M. W. and Kim, H.-W. (1997). The differential effects of social support on the psychological well-being of aging mothers of adults with mental illness or mental retardation. Family Relations, 46, 383–394.CrossRefGoogle Scholar
Guest, G., Bunce, A. and Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18, 59–82.CrossRefGoogle Scholar
Harvey, R. J., Rossor, M., Skelton-Robinson, M. and Garralda, E. (1998). Young Onset Dementia: Epidemiology, Clinical Symptoms, Family Burden, Support and Outcome. London: Dementia Research Group.Google Scholar
Hsieh, H. F. and Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative health research, 15, 1277–1288.CrossRefGoogle ScholarPubMed
Jurkovic, G. J., Jessee, E. H. and Goglia, L. R. (1991). Treatment of parental children and their families: conceptual and technical issues. American Journal of Family Therapy, 19, 302–314.CrossRefGoogle Scholar
Kleinke, C. L. (1991). Coping with Life Challenges. San Francisco: Brooks/Cole.Google Scholar
Moos, R. H. and Schaefer, J. A. (1984). The crisis of physical illness. In Moos, R. H. (ed.), Coping With Physical Illness (pp. 3–25). USA: Springer.CrossRefGoogle Scholar
Pakenham, K. I., Chiu, J., Bursnall, S. and Cannon, T. (2007). Relations between social support, appraisal and coping and both positive and negative outcomes in young carers. Journal of Health Psychology, 12, 89–102.CrossRefGoogle ScholarPubMed
Reisberg, B., Ferris, S. H., de Leon, M. J. and Crook, T. (1982). The global deterioration scale for assessment of primary degenerative dementia. The American journal of psychiatry, 139, 1136–1139.Google ScholarPubMed
Sampson, E., Warren, J. and Rossor, M. (2004). Young onset dementia. Postgraduate Medical Journal, 80, 125–139.CrossRefGoogle ScholarPubMed
Svanberg, E., Stott, J. and Spector, A. (2010). “Just helping”: children living with a parent with young onset dementia. Aging Ment Health, 14, 740–751. doi:10.1080/13607861003713174.CrossRefGoogle ScholarPubMed
Thomsen, A. H. (2000). Responses to stress in adolescence: measurement of coping and involuntary stress responses. Journal of Consulting and Clinical Psychology, 68, 976–992.Google Scholar
Underdown, A. (2002). ‘I'm growing up too fast’: messages from young carers. Children and Society, 16, 57–60.CrossRefGoogle Scholar
Valleau, M. P., Bergner, R. M. and Horton, C. B. (1995). Parentification and caretaker syndrome: an empirical investigation. Family Therapy, 22, 157–164.Google Scholar
Van Vliet, D., Bakker, C., Koopmans, R. T., Vernooij-Dassen, M. J., Verhey, F. R. and De Vugt, M. E. (2010a). Research protocol of the needyd-study (needs in young onset dementia): a prospective cohort study on the needs and course of early onset dementia. BMC Geriatrics, 10, 13.CrossRefGoogle ScholarPubMed
Van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T. and Verhey, F. R. (2010b). Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry, 25, 1091–1100.CrossRefGoogle ScholarPubMed
World Health Organization. (2012). Dementia: a public health priority. Geneva, Switzerland: World Health Organization.Google Scholar