Abstract：
BACKGROUND: Dementia is a leading cause of death globally. However, end-of-life care is often poor or non-existent. People with dementia from ethnic minorities or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations.
OBJECTIVE: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity.
METHODS: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research.
RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services.
CONCLUSIONS: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.
OBJECTIVE: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity.
METHODS: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research.
RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services.
CONCLUSIONS: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.
摘要：
背景：痴呆是全球死亡的主要原因。然而,临终关怀往往很差或根本不存在。来自少数民族或社会经济贫困社区的痴呆症患者更不可能获得良好的姑息治疗。尽管如此,对临终关怀的研究往往无法包括这些人群的人群。
目的：了解需要哪些研究来改善每个痴呆症患者的临终关怀，以及如何促进包容性。
方法：学术文献的范围审查(Medline，CINAHL,EMBASE,PsycInfo和Scopus数据库）于2000年1月至2023年4月之间发布。通过一系列讲习班，与不同的主要利益攸关方分享了调查结果。结论随后被用来为包容性的临终关怀和未来研究提供循证建议。
结果：文献中的主题在关键利益相关者的个人和专业经验中是显而易见的。姑息治疗提供者通常不知道那些在边缘死亡的人的需求。支助服务稀缺，而且在地理上不平等。痴呆症患者及其家人缺乏个性化和文化上适当的护理。利益相关者群体的主题包括需要更好的服务之间的沟通，更多投资于痴呆症作为一种姑息疾病，创造了增加信任和促进与服务接触的途径。
结论：未来的研究应侧重于教育策略，包括与其他限制生命的疾病相比，痴呆症患者的最佳临终关怀有何不同，具有适当的包容性模型，需要适当资助的护理。
目的：了解需要哪些研究来改善每个痴呆症患者的临终关怀，以及如何促进包容性。
方法：学术文献的范围审查(Medline，CINAHL,EMBASE,PsycInfo和Scopus数据库）于2000年1月至2023年4月之间发布。通过一系列讲习班，与不同的主要利益攸关方分享了调查结果。结论随后被用来为包容性的临终关怀和未来研究提供循证建议。
结果：文献中的主题在关键利益相关者的个人和专业经验中是显而易见的。姑息治疗提供者通常不知道那些在边缘死亡的人的需求。支助服务稀缺，而且在地理上不平等。痴呆症患者及其家人缺乏个性化和文化上适当的护理。利益相关者群体的主题包括需要更好的服务之间的沟通，更多投资于痴呆症作为一种姑息疾病，创造了增加信任和促进与服务接触的途径。
结论：未来的研究应侧重于教育策略，包括与其他限制生命的疾病相比，痴呆症患者的最佳临终关怀有何不同，具有适当的包容性模型，需要适当资助的护理。
