Abstract：
BACKGROUND: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India.
OBJECTIVE: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia.
METHODS: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case.
RESULTS: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life.
CONCLUSIONS: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India.
OBJECTIVE: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia.
METHODS: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case.
RESULTS: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life.
CONCLUSIONS: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India.
摘要：
背景：关于痴呆症患者及其家人/无偿照顾者如何在印度获得护理和支持的证据有限。
目的：这项研究使用案例插图来说明治疗痴呆症的可能途径，从接受诊断到长期支持，并强调与目前为痴呆症患者提供护理相关的差距和挑战。
方法：作为加强应对发展中国家痴呆症（STRIDE）项目的一部分，并有助于分析印度的痴呆症护理政策和系统，案例小插曲用于说明痴呆症患者及其家人在印度背景下寻求护理时可能会遇到的各种情况。八个假设，但是痴呆症患者的真实案例是由印度有痴呆症护理经验的多学科团队创造的，绘制出每个病例可能的护理过程。
结果：调查痴呆症患者的八种不同护理轨迹，突出了与印度背景相关的重要模式。我们发现，痴呆症诊断的延迟归因于公众和医疗专业人员对痴呆症的认识不足，以及严重缺乏促进痴呆症诊断的专家服务。诊断后,支持被认为是有限的，并且与相当大的自付(OOP)成本相关。家庭主要为痴呆症患者提供长期护理，直到生命结束。
结论：需要采取一些措施来改善印度的痴呆症护理。提高医疗专业人员和公众对痴呆症的认识至关重要。痴呆症专家的短缺可以通过适当的任务转移来部分解决。最后,需要更多的研究来制定基于证据的社区干预措施,以支持印度为痴呆症患者提供非正式护理.
目的：这项研究使用案例插图来说明治疗痴呆症的可能途径，从接受诊断到长期支持，并强调与目前为痴呆症患者提供护理相关的差距和挑战。
方法：作为加强应对发展中国家痴呆症（STRIDE）项目的一部分，并有助于分析印度的痴呆症护理政策和系统，案例小插曲用于说明痴呆症患者及其家人在印度背景下寻求护理时可能会遇到的各种情况。八个假设，但是痴呆症患者的真实案例是由印度有痴呆症护理经验的多学科团队创造的，绘制出每个病例可能的护理过程。
结果：调查痴呆症患者的八种不同护理轨迹，突出了与印度背景相关的重要模式。我们发现，痴呆症诊断的延迟归因于公众和医疗专业人员对痴呆症的认识不足，以及严重缺乏促进痴呆症诊断的专家服务。诊断后,支持被认为是有限的，并且与相当大的自付(OOP)成本相关。家庭主要为痴呆症患者提供长期护理，直到生命结束。
结论：需要采取一些措施来改善印度的痴呆症护理。提高医疗专业人员和公众对痴呆症的认识至关重要。痴呆症专家的短缺可以通过适当的任务转移来部分解决。最后,需要更多的研究来制定基于证据的社区干预措施,以支持印度为痴呆症患者提供非正式护理.
