Emergency department communication with diverse caregivers and persons living with dementia: A qualitative study

Research to date has detailed numerous challenges in emergency department (ED) communication with persons living with dementia (PLWD) and their caregivers. However, little is known about communication experiences of individuals belonging to minoritized racial and ethnic groups, who are disproportionately impacted by dementia and less likely to be included in dementia research.

We conducted semi-structured interviews with 29 caregivers of PLWD from two urban academic hospital EDs with distinct patient populations. The first site is an ED in the Northeast serving a majority White, English-speaking, and insured population. The second site is an ED in the South serving a majority Black and/or Hispanic, Spanish-speaking, and underinsured population. Interviews lasted an average of 25 min and were digitally recorded and transcribed. We used an inductive approach to analyze interview transcripts for dominant themes and compared themes between sites.

Our sample included caregivers of diverse racial and ethnic backgrounds. Caregivers cared for PLWD who spoke English, Spanish, Arabic, Chinese, and Vietnamese. We identified three themes. First, caregiver advocacy was central to experiences of ED communication, particularly when PLWD primarily spoke a non-English language. Second, routine care plans did not address what mattered most to participants and PLWD. Participants felt that care arose from protocols and did not address what mattered most to them. Third, White English-speaking caregivers in Site 1 more commonly expected ED staff to engage them in care decision-making than Black, Hispanic, Asian, and Middle Eastern caregivers in Site 2.

Language barriers amplify the higher intensity care needed by PLWD in the ED. Strategies should be developed for communicating with PLWD and caregivers about what matters most in their ED care.