ABSTRACT

Persons living with dementia and their caregivers often face challenges in accessing support for their complex needs. This study aims to understand how program administrators, people living with dementia, unpaid caregivers, and decision-makers perceive specific dementia care programs and whether they are adequately meeting the needs of individuals living with dementia. Forty semi-structured interviews were conducted between 2018 and 2020 in five North American jurisdictions. Three main gaps were identified (1) disconnected system infrastructure, (2) lack of comprehensive services to meet diverse needs, and (3) inconsistent understandings of dementia. Despite having programs in place, there remain significant limitations in systems that could be addressed to adequately meet the needs of individuals living with dementia and their caregivers.

摘要

痴呆症患者及其护理人员在获得满足其复杂需求的支持方面常常面临挑战。本研究旨在了解项目管理者、痴呆症患者、无偿护理人员和决策者如何看待特定的痴呆症护理项目，以及它们是否充分满足痴呆症患者的需求。2018 年至 2020 年间，在北美五个司法管辖区进行了 40 次半结构化访谈。确定了三个主要差距（1）系统基础设施脱节，（2）缺乏满足多样化需求的综合服务，以及（3）对痴呆症的理解不一致。尽管已经制定了相关计划，但可以解决的系统仍然存在很大的局限性，无法充分满足痴呆症患者及其护理人员的需求。