Ramakrishnan Chandrika, Malhotra Chetna
Lien Centre for Palliative Care, Duke-NUS Medical School, 8 College Road, 169857, Singapore, Singapore.
Health Services and Systems Research, Duke-NUS Medical School, 8 College Road, 169857, Singapore, Singapore.
BMC Health Serv Res. 2025 May 23;25(1):747. doi: 10.1186/s12913-025-12895-3.
Community dementia care services are designed to support persons with dementia (PWDs) and their caregivers. Despite their importance, these services are underutilized. Previous studies have typically focused on challenges in accessing specific types of dementia care services from the perspective of a single stakeholder group. To address this limitation, we conducted a qualitative study exploring the challenges faced by caregivers in accessing the full spectrum of community dementia care services, incorporating insights from both informal caregivers and healthcare providers.
We conducted semi-structured in-depth interviews with 22 participants: 11 caregivers of PWDs, 8 healthcare providers, and 2 policy makers. The thematic analysis employed was guided by Levesque's framework for access to care.
We synthesized caregivers' multiple challenges under five themes - (1) lack of information and awareness limit perceived need for services, (2) cultural norms and values influence decision to seek services, (3) complex processes and long waiting times hinder ability to reach services, (4) financial constraints and high costs force alternate care arrangements, and (5) inability to meet expectations and lack of family support limit engagement with services. To overcome the challenges, participants suggested public education to reduce stigma around dementia; leveraging digital health to improve caregivers' access to information, healthcare providers, and social and emotional support; and revisiting financial policies to reduce high caregiving costs for dementia.
The study highlights a range of challenges that hinder access to community dementia care services. There is an urgent need to redesign these services to better meet the needs of PWDs and their caregivers, thereby creating a more supportive and responsive care ecosystem.
社区痴呆症护理服务旨在支持痴呆症患者（PWDs）及其照顾者。尽管这些服务很重要，但利用率却很低。以往的研究通常从单一利益相关者群体的角度关注获取特定类型痴呆症护理服务所面临的挑战。为解决这一局限性，我们开展了一项定性研究，探讨照顾者在获取全方位社区痴呆症护理服务时所面临的挑战，纳入了来自非正式照顾者和医疗服务提供者的见解。
我们对22名参与者进行了半结构化深度访谈：11名痴呆症患者的照顾者、8名医疗服务提供者和2名政策制定者。所采用的主题分析以Levesque的医疗服务获取框架为指导。
我们将照顾者面临的多重挑战归纳为五个主题——（1）信息和意识的缺乏限制了对服务的感知需求，（2）文化规范和价值观影响寻求服务的决定，（3）复杂的流程和漫长的等待时间阻碍了获得服务的能力，（4）经济限制和高昂成本迫使采用替代护理安排，（5）无法满足期望和缺乏家庭支持限制了对服务的参与度。为克服这些挑战，参与者建议进行公众教育以减少对痴呆症的污名化；利用数字健康改善照顾者获取信息、医疗服务提供者以及社会和情感支持的机会；重新审视财政政策以降低痴呆症护理的高昂成本。
该研究突出了一系列阻碍获得社区痴呆症护理服务的挑战。迫切需要重新设计这些服务，以更好地满足痴呆症患者及其照顾者的需求，从而创建一个更具支持性和响应性的护理生态系统。
