Department of Psychology, University of Bologna, Bologna, Italy.
Int J Geriatr Psychiatry. 2021 Jul;36(7):975-992. doi: 10.1002/gps.5542. Epub 2021 Apr 7.
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.
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.
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.
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.
大多数研究都关注痴呆症患者的配偶/伴侣和成年子女的经历和需求。在本综述中，研究了子女和年轻人父母患痴呆症的生活体验。研究结果将为痴呆症护理领域的研究人员和专业人员提供信息。
在 CINAHL、PsychINFO、PubMed、Scopus 和 Web of Science 中进行了系统的文献检索。遵循严格的筛选过程，并使用定性和观察研究检查表评估研究的方法学质量。对选定的文章进行了叙述性综合。
共纳入 21 项研究，文献综合揭示了六个主题。第一个主题涉及处理诊断的困难，这通常之前是一个长时间的不确定、困惑、家庭痛苦和冲突的时期。第二个主题讨论了家庭关系的变化，包括子女和年轻人在支持父母和保持家庭完整方面的角色。第三个主题描述了照顾对子女和年轻人的影响，他们努力平衡照顾任务和发展需求。第四个主题展示了子女和年轻人个人生活在教育/职业和生活规划方面的后果。第五个主题说明了主要的适应模式和应对策略。最后一个主题讨论了根据“整个家庭”方法为这一人群提供适当支持和服务的必要性。
纳入的研究为了解和认识子女和年轻人父母患痴呆症的经历以及为这一人群提供支持的具体需求提供了基础。
