Centre for Ageing & Population Studies, Research Department of Primary Care & Population Health, University College London, London, UK.
Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, London, UK.
J Adv Nurs. 2021 Feb;77(2):664-680. doi: 10.1111/jan.14654. Epub 2020 Nov 29.
To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life.
Systematic review and narrative synthesis of qualitative studies.
MEDLINE, Embase, PsycINFO, CINAHL.
Databases were searched for qualitative studies from January 2000-February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis.
Twenty studies were included; 15 explored the views of practitioners working with people living with dementia in long-term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with 'the right thing to do'; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia.
The complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate.
This review summarizes practitioners and families' experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.
综合有关接近生命终末期的痴呆症患者营养和水合作用的实践方面的患者、家属和护理人员的观点和经验的定性证据。
对定性研究进行系统评价和叙述性综合。
MEDLINE、Embase、PsycINFO、CINAHL。
从 2000 年 1 月至 2020 年 2 月，在数据库中搜索定性研究。排除定量研究或报告生物学机制、评估、量表或诊断工具的研究。使用叙述性综合方法（主题分析）综合结果。
纳入 20 项研究；其中 15 项探讨了在长期护理机构或医院中与痴呆症患者一起工作的护理人员的观点。确定了四个主题：支持营养和水合作用的挑战；平衡所有相关方的观点与“正确的做法”；国家背景和社会文化影响；以及在痴呆症接近生命终末期时支持营养和水合作用的策略。
支持接近生命终末期的痴呆症患者的营养和水合作用的复杂性与国家背景、知识缺乏以及在患者能够沟通时缺乏规划有关。
本综述总结了护理人员和家属的经验，并强调需要让痴呆症患者参与研究，以帮助了解他们对生命终末期营养和水合作用的看法和偏好；以及那些支持他们在社区中的家属的看法。综述结果与多学科团队相关，这些团队可以从帮助营养和水合作用决策和支持的策略中学习。
