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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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