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


CONCLUSIONS
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.
School for Mental Health and Neuroscience,Alzheimer Center Limburg,Maastricht University Medical Center,Maastricht,the Netherlands.
Joany K
JK
Millenaar
Alzheimer Center Nijmegen,Radboud University Nijmegen Medical Center,Nijmegen,the Netherlands.
Deliane
D
van Vliet
Florence,Mariahoeve,Center for Specialized Care in Young-Onset Dementia,Den Haag,the Netherlands.
Christian
C
Bakker
Alzheimer Center Nijmegen,Radboud University Nijmegen Medical Center,Nijmegen,the Netherlands.
Myrra J F J
MJ
Vernooij-Dassen
Alzheimer Center Nijmegen,Radboud University Nijmegen Medical Center,Nijmegen,the Netherlands.
Raymond T C M
RT
Koopmans
School for Mental Health and Neuroscience,Alzheimer Center Limburg,Maastricht University Medical Center,Maastricht,the Netherlands.
Frans R J
FR
Verhey
School for Mental Health and Neuroscience,Alzheimer Center Limburg,Maastricht University Medical Center,Maastricht,the Netherlands.
Marjolein E
ME
de Vugt
D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D032721:Adult Children / Q000523:psychology*; D017668:Age of Onset; D017028:Caregivers / Q000523:psychology*; D003704:Dementia / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology; D018450:Disease Progression; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009426:Netherlands / Q000453:epidemiology; D010290:Parents; D012944:Social Support; D013315:Stress, Psychological / Q000209:etiology*