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. 2021 Jul;36(7):975-992.
doi: 10.1002/gps.5542. Epub 2021 Apr 7.

Children and young people's experience of parental dementia: A systematic review

Ilaria Chirico  1 , Giovanni Ottoboni  1 , Marco Valente  1 , Rabih Chattat  1
Affiliations

Children and young people's experience of parental dementia: A systematic review

Ilaria Chirico et al. Int J Geriatr Psychiatry. 2021 Jul.

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.

Keywords: adaptation; adolescent; adult children; caregivers; child; child development; dementia; family relations; parents; psychological; young adult.

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Conflict of interest statement

The authors declare that there are no conflict of interests.

Rabih Chattat conceptualized the study. Ilaria Chirico and Marco Valente acquired the data and performed the data analysis. Giovanni Ottoboni supervised the process. All authors interpreted the data. Ilaria Chirico wrote the first draft of the manuscript. Agreement has been reached for all aspects of the manuscript in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. All authors critically revised the manuscript and agreed to the published version of the manuscript.

Figures

FIGURE 1
FIGURE 1
Flow chart showing number of articles selected for systematic review
See this image and copyright information in PMC

References

    1. Alzheimer's Disease International. From Plan to Impact II: The Urgent Need for Action. London: ADI; 2019:62.
    1. World Health Organization . Global Action Plan on the Public Health Response to Dementia 2017–2025. Geneva: WHO Document Production Services; 2017:43.
    1. World Health Organization . Towards a Dementia Plan: A WHO Guide. Geneva: WHO; 2018:78.
    1. World Health Organization . Dementia Key Facts 2019. http://www.who.int/news‐room/fact‐sheets/detail/dementia. Accessed June 29, 2020.
    1. Schneider J, Hallam A, Murray J, et al. Formal and informal care for people with dementia: factors associated with service receipt. Aging Ment Health. 2002;6(3):255‐265. 10.1080/13607860220142486 - DOI - PubMed

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