Children and young people's experience of parental dementia: A systematic review. (7th April 2021)

• Record Type: Journal Article
• Authors: Chirico, Ilaria; Ottoboni, Giovanni; Valente, Marco; Chattat, Rabih
• Is Part Of: International journal of geriatric psychiatry. Volume 36:Number 7(2021)
• Page Start: 975
• Page End: 992
• Publication Date: 2021-04-07
• Subjects: adaptation -- adolescent -- adult children -- caregivers -- child -- child development -- dementia -- family relations -- parents -- psychological -- young adult; Geriatric psychiatry -- Periodicals; Geriatric Psychiatry -- Periodicals; 618.97689
• DOI: 10.1002/gps.5542
• Languages: English
• ISSNs: 0885-6230

Abstract

Abstract: Objectives: Most studies have been concerned with the experiences and needs of spouses/partners and adult children of people with dementia. In this review, children and young people's lived experience of parental dementia was investigated. Findings will inform both researchers and professionals in the area of dementia care. Design: A systematic literature search was performed in CINAHL, PsychINFO, PubMed, Scopus, and Web of Science. A rigorous screening process was followed, and a checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Narrative synthesis of the selected articles was carried out. Results: Twenty‐one studies were included and a synthesis of the literature revealed six themes. The first theme concerned the difficulties in dealing with the diagnosis which was often preceded by a long period characterized by uncertainty, confusion, family distress, and conflicts. The second theme discussed changes in family relationships in terms of the role of children and young people in supporting both parents and keeping family together. The third theme described the impact of caring on children and young people who struggled to balance caring tasks and developmental needs. The fourth theme showed consequences on children and young people's personal lives in terms of education/career and life planning. The fifth theme illustrated main adaptation models and coping strategies. The last theme discussed the need for appropriate support and services based on a "whole family" approach. Conclusions: The included studies provide the basis for knowledge and awareness about the experience of children and young people with a parent with dementia and the specific needs of support for this population. Key points: Children and young people living and/or caring for a parent with dementia are likely to experience relevant changes in family relationships in terms of providing significant support to both parents and keeping family together Parental dementia is likely to affect children and young people's choices, time perspectives and life planning in relation to education/career, mobility, and personal lives Children and young people can assume similar levels of caring responsibilities to adult carers, although they may be more vulnerable due to their age and developmental needs Appropriate support and care services are urgently needed to suit the needs of this population within a "whole family" approach