Features of primary care practice influence emergency care-seeking behaviors by caregivers of persons with dementia: A multiple-perspective qualitative study

Background: Persons with dementia use emergency department services at rates greater than other older adults. Despite risks associated with emergency department use, persons with dementia and their caregivers often seek emergency services to address needs and symptoms that could be managed within primary care settings. As emergency departments (EDs) are typically sub-optimal environments for addressing dementia-related health issues, facilitating effective primary care provision is critical to reduce the need for, or decision to seek, emergency services. The aim of this study is to explore how features of primary care practice influence care-seeking decisions by community-dwelling persons with dementia and familial caregivers. Methods: Semi-structured qualitative interviews were conducted with 27 key dementia-care stakeholders (10 primary care/geriatrics providers, 5 caregivers, 4 emergency medicine physicians, 5 aging service providers, and 3 community paramedics) from multiple health systems. Transcripts from audio recordings were analyzed using a thematic analysis framework to iteratively code and develop emergent themes. Features of primary care were also synthesized into lists of tangible factors leading to emergency care-seeking and those that help prevent (or decrease the need for) ED use. Findings: Stakeholders identified eight categories of features of primary care encompassing the clinical environment and provision of care. These collapsed into four major themes: (1) clinic and organizational features—including clinic structure and care team staffing; (2) emphasizing proactive approaches to anticipate needs and avoid acute problems—including establishing goals of care, preparing for the future, developing provider–patient/provider–caregiver relationships, and providing caregiver support, education, and resources to help prevent emergencies; (3) health care provider skills and knowledge of dementia—including training and diagnostic capabilities; and (4) engaging appropriate community services/resources to address evolving needs. Conclusions: Features of primary care practice influence decisions to seek emergency department care at the system, organizational/clinic, medical, and interpersonal levels, particularly regarding proactive and reactive approaches to addressing dementia-related needs. Interventions for improving primary care for persons with dementia and their caregivers should consider incorporating features that facilitate proactive family-centered dementia care across the four identified themes, and minimize those leading to caregiver decisions to utilize emergency services.