Young-Onset Dementia: The Child\u27s Experience with Coping

Young onset dementia (YOD) affects not only the person diagnosed, but the family unit as a whole. It is estimated that as many as 500,000 people in the United States have YOD and around 250,000 children are involved in caring for these people. A child of a parent with YOD can begin to experience negative effects when the child begins to take part in caregiving for the person with young onset dementia (PWYOD). Feelings of stress, anger, fear of the future, depression, social isolation, and increasing responsibility of caring for the PWYOD can be felt by children as caregivers. Research shows that children of people with YOD have reported an extreme lack of support and decreased communication within the family. The purpose of this thesis was to examine current interventions designed to improve coping for children of parents with YOD. A review of literature using CINAHL, Medline, and PsychINFO was conducted to gather peer-reviewed articles and journals relating to interventions to help children of parents with YOD cope. However, no studies have discussed interventions specifically for the child. Therefore, information was pulled from 5 studies regarding what children of people with YOD feel has helped them, in their respective experiences, to deal with the stresses of a parent with YOD. Research suggests that individualized care should be provided for these children based on: age, developmental stage, and experience. Children have reported that they cope by spending time away from the home, participating in extracurricular activities, and spending time with friends. Clear communication by all members of the family is also reported to be vital in easing the stresses of caring for a parent with YOD. While children have developed these coping mechanisms, interventions need to be formally designed and their effect on improving coping examined. Analyzing the experiences of the children with parents with YOD is necessary for clinicians to gain insight into what interventions worked for this population, and what interventions need to be created for further and more individualized support