Introduction: Although Aboriginal and Torres Strait Islander peoples are increasingly living healthier and longer lives, they continue to experience a high prevalence and incidence of dementia and cognitive impairment. Navigating dementia care services is challenging, and there is limited availability of flexible, culturally secure health and community care services. The aim of this study is to use a culturally adapted patient journey mapping methodology to examine the lived experiences of Aboriginal and Torres Strait Islander Aboriginal peoples living with dementia/cognitive impairment and their carers navigating their care journeys.

Methods and analysis: The overarching principle guiding this project is cultural security, referring to the incorporation of processes such that the research will not compromise the cultural rights, values and expectations of Aboriginal and Torres Strait Islander peoples. In this three-phase participatory action research study, we will (1) formalise relationships with health and home care services as recruitment sites; (2) conduct research yarns (a culturally secure qualitative data collection tool) with Aboriginal and Torres Strait Islander peoples living with dementia or cognitive impairment and their carers about their experiences of healthcare including perceived barriers and enablers to high-quality care. Data collected in research yarns will be analysed using a modified framework approach to map patient journeys and; (3) make recommendations for improving care identified by participants to be discussed and refined with stakeholder groups and to inform best practice guideline development.

Ethics and dissemination: This project follows the National Health and Medical Research Council's guidelines for ethical conduct in research with Aboriginal and Torres Strait Islander communities and has been designed with active involvement and governance by Aboriginal and Torres Strait Islander peoples. The results will be disseminated through community feedback sessions, newsletters, conference presentations, peer-reviewed publications and best practice guidelines. Dissemination will also be guided by an established Aboriginal Reference Group.

Keywords: Cognition; Dementia; Life Change Events.

© Author(s) (or their employer(s)) 2025. Re-use permitted under CC BY. Published by BMJ Group.

简介： 虽然土著和托雷斯海峡岛民的健康状况和寿命正在逐渐改善，但他们仍然面临较高的痴呆症和认知障碍患病率和发病率。在现有的医疗护理服务中导航非常具有挑战性，并且灵活的文化安全型卫生和社会护理服务也相对有限。本研究旨在使用文化适应性的患者旅程映射方法来考察土著和托雷斯海峡岛民在面对痴呆症/认知障碍时的生活经历及其照顾者在寻求护理过程中的经历。

方法与分析： 指导该项目的核心原则是文化安全，这指的是将研究过程中纳入的流程确保不会侵犯土著和托雷斯海峡岛民的文化权利、价值观和期望。在此项三阶段参与性行动研究中，我们将（1）正式确立与卫生保健和社会护理服务机构的合作关系作为招募地点；（2）通过开展“研究对话”（一种文化安全型定性数据收集工具），与土著和托雷斯海峡岛民及其照顾者进行访谈，了解他们在医疗保健方面的体验、感知的高质量护理障碍和促进因素。在研究对话中收集的数据将使用改良框架方法进行分析以绘制患者旅程；（3）根据参与者提出的改进建议，并通过利益相关方小组讨论和改进后制定最佳实践指南。

伦理与传播： 该项目遵循国家健康与医学研究委员会关于在土著和托雷斯海峡岛民社区中开展研究的道德行为准则，设计过程中积极纳入了土著和托雷斯海峡岛民的参与和治理。结果将通过社区反馈会议、新闻通讯、学术会议演讲、同行评审出版物和最佳实践指南进行传播。传播过程也将由一个已建立的土著参考小组指导。

关键词： 认知；痴呆症；生活变化事件。