Social Ageing (SAGE) Futures Lab, School of Arts and Humanities, Edith Cowan University, Perth, WA, Australia.
Centre for Research in Aged Care, School of Nursing and Midwifery, Edith Cowan University, Perth, WA, Australia.
J Geriatr Psychiatry Neurol. 2024 Sep;37(5):343-354. doi: 10.1177/08919887241232647. Epub 2024 Feb 9.
Patient involvement is a critical component of dementia research priority-setting exercises to ensure that research benefits are relevant and acceptable to those who need the most. This systematic review synthesises research priorities and preferences identified by people living with dementia and their caregivers.
Guided by Joanna Briggs Institute methodology, and Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework, we conducted a systematic search in five electronic databases: CINAHL, Medline, PsycINFO, Web of Science and Scopus. The reference lists of the included studies were also manually searched. We combined quantitative and qualitative data for synthesis and descriptive thematic analysis.
Eleven studies were included in this review. Findings are grouped into four main categories: Increase in knowledge, education, and awareness; Determining the cause; Sustainability of care; and Cure of dementia and related conditions.
There is a need to respond to the stigma associated with dementia, which limits access to care and the quality of life for both people living with dementia and their caregivers. We need to work on changing public, private and workplace attitudes about dementia and encourage supporting and participating in dementia research. Future research should involve people living with dementia and their primary caregivers from culturally and linguistically diverse communities in priority-setting exercises.
患者参与是痴呆症研究优先级设定工作的关键组成部分,以确保研究成果对最需要的人具有相关性和可接受性。本系统评价综合了痴呆症患者及其照护者确定的研究重点和偏好。
本研究采用 Joanna Briggs 研究所的方法和系统评价和荟萃分析的首选报告项目框架,在五个电子数据库(CINAHL、Medline、PsycINFO、Web of Science 和 Scopus)中进行了系统搜索。还对手册搜索中包含的研究的参考列表进行了手动搜索。我们结合了定量和定性数据进行综合和描述性主题分析。
本综述纳入了 11 项研究。研究结果分为四个主要类别:增加知识、教育和意识;确定病因;护理的可持续性;以及痴呆症和相关疾病的治疗。
需要应对与痴呆症相关的耻辱感,这限制了痴呆症患者及其照护者获得护理和生活质量的机会。我们需要努力改变公众、私人和工作场所对痴呆症的态度,并鼓励支持和参与痴呆症研究。未来的研究应涉及来自不同文化和语言社区的痴呆症患者及其主要照护者,参与优先级设定工作。