Abstract
BACKGROUND: Over half of the people with dementia visit the emergency department (ED) each year. Little is known about how people with dementia and their care partners conceptualize or communicate about health outcome goals or care preferences during acute care episodes. PARTICIPANTS AND SETTING: We conducted interviews with 14 Hispanic people with dementia and 19 care partners recruited from a public safety net hospital system in the southeastern United States. Participants were community-dwelling and had recently visited the ED. METHODS: We used a qualitative study design informed by phenomenology and guided by the patient priorities care (PPC) framework. Interviews elicited patients' health priorities, including their care preferences and health outcome goals, as well as their experiences communicating with ED and hospital care teams. We used a deductive content analysis to identify health priorities and inductive thematic analysis regarding communication experiences. RESULTS: We identified three key themes. First, participants' health priorities were grounded in values of maintaining social connection and independence. Second, hospitalizations were distressing, disorienting, and physically burdensome for both patients and care partners, leading to preferences to avoid admission whenever possible. Third, communication with ED and hospital teams felt unidirectional, with care plans delivered rather than discussed. Participants felt that care preferences were rarely elicited or incorporated into clinical decision-making. CONCLUSIONS: Hospital admission is a critical decision point during acute care episodes for people with dementia. Incorporating brief conversations about health priorities at this juncture may improve alignment between emergency care and what matters most to patients and care partners. Adapting existing frameworks like PPC for time-pressured acute care settings may help promote shared decision-making about hospital admission.