TY - JOUR
T1 - The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study
AU - Millenaar, Joany K.
AU - van Vliet, Deliane
AU - Bakker, Christian
AU - Vernooij-Dassen, Myrra J. F. J.
AU - Koopmans, Raymond T. C. M.
AU - Verhey, Frans R. J.
AU - de Vugt, Marjolein E.
PY - 2014/12
Y1 - 2014/12
N2 - 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.
AB - 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.
KW - young onset dementia
KW - young carers
KW - children
KW - needs
KW - support
KW - impact
U2 - 10.1017/S1041610213001890
DO - 10.1017/S1041610213001890
M3 - Article
C2 - 24230480
SN - 1041-6102
VL - 26
SP - 2001
EP - 2010
JO - International Psychogeriatrics
JF - International Psychogeriatrics
IS - 12
ER -