Challenges to accessing community dementia care services: a qualitative study

BackgroundCommunity 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.MethodsWe 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.ResultsWe 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.ConclusionThe 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.