Department of Learning, Informatics, Management and Ethics, LIME, 27106Karolinska Institutet, Solna, Sweden.
Department of Caring Science, Sophiahemmet University, Stockholm, Sweden.
Dementia (London). 2021 Nov;20(8):2933-2956. doi: 10.1177/14713012211023653. Epub 2021 Jun 6.
Dementia is a key health issue worldwide. In Sweden, as in other European countries, most persons with dementia live in domestic settings and are often cared for by their family members. This scoping review aims to describe the perspectives of children and young adults with a parent diagnosed with dementia. Young family members may be alone and without support despite their high level of care burden.
Three electronic databases (PubMed, Web of Science and PsycINFO) were used to search for English-language articles focusing on children and young adults between the ages of 6 and 34 who have a parent diagnosed with dementia. A thematic synthesis of the included articles was performed.
Sixteen original published qualitative studies were identified. These studies were categorised based on information about the authors, year of publication, study location, participants, aim of the study, data collection, analysis and main findings. Five main analytical themes were identified: (1) children and young adults identify changes in their parents' behaviour and personality, (2) children and young adults experience changed roles and relationships within the family, (3) children and young adults need to cope with an uncertain future, (4) children and young adults relate changes in their parent to their own mixed emotions and (5) children and young adults need help and seek it out but experience inadequate support.
The children and young adults in the included studies seem to provide significant levels of care and support to their affected parent, which may affect their own health, social relations, community participation, employment, education, finances and sense of security. This means that it is important for health care systems and social services to identify barriers to these young family members' access to relevant care and support for themselves.
痴呆症是全球范围内的一个重要健康问题。在瑞典，与其他欧洲国家一样，大多数痴呆症患者居住在家庭环境中，通常由家庭成员照顾。本范围综述旨在描述被诊断患有痴呆症的父母的儿童和青年的观点。尽管年轻的家庭成员照顾负担很重，但他们可能孤立无援，没有得到支持。
使用三个电子数据库（PubMed、Web of Science 和 PsycINFO）搜索了关于年龄在 6 至 34 岁之间、父母被诊断患有痴呆症的儿童和青年的英文文章。对纳入的文章进行了主题综合分析。
确定了 16 项原始发表的定性研究。这些研究根据作者、发表年份、研究地点、参与者、研究目的、数据收集、分析和主要发现进行了分类。确定了五个主要分析主题：（1）儿童和青年发现父母的行为和个性发生变化，（2）儿童和青年经历家庭角色和关系的变化，（3）儿童和青年需要应对不确定的未来，（4）儿童和青年将父母的变化与自己的混合情绪联系起来，（5）儿童和青年需要帮助并寻求帮助，但获得的支持不足。
纳入研究中的儿童和青年似乎为受影响的父母提供了大量的照顾和支持，这可能会影响他们自己的健康、社会关系、社区参与、就业、教育、财务和安全感。这意味着卫生保健系统和社会服务部门必须确定这些年轻家庭成员获得相关照顾和支持的障碍，以确保他们能够获得这些资源。
