The experience of children with parents diagnosed with young onset dementia: a systematic literature review

Abstract

Background: Young onset dementia (YOD) may develop rapidly and affect those who have dependent children. There remains a lack of understanding of the impact on children living with a parent with YOD. Aims: To explore published literature in order to understand the impact on children living with a parent with YOD. Methods: A systematic search of the following databases—Medline; PsychINFO; CINAHL; and Scopus—for literature published from 1 January 2013 to 31 December 2018. Findings: Three major themes were identified: first, coping, which comprised two sub-themes of avoiding the situation and being empowered. Second, change, which encompassed two sub-themes of change of personality and change of family role. The third was loss. Conclusions: There remains a need to raise awareness and develop support services for children of parents with YOD. Community nurses are the best place healthcare professionals to identify and support the needs of both the person with YOD and their children.