What Matters Most to People Living With Dementia and Their Care Partners During Emergency Department Visits

Of the 6 million people living with dementia (PLWD) in the United States, half visit an emergency department (ED) annually. Little is known about the specific emergency care preferences and priorities of PLWD and their care partners. This descriptive qualitative study engaged PLWD and care partners to identify their ED care priorities and the factors that influence their overall evaluation of ED care.

We recruited PLWD receiving care in a large academic ED and their care partners to participate in individual or dyadic interviews. Interviews were analyzed using thematic analysis and member checking interviews were completed to confirm and expand on study findings.

We conducted interviews with 55 participants (N = 19 PLWD, 24 care partners, 6 dyads). PLWD and care partners evaluated ED care experiences through a summative lens shaped by: (1) universal priorities common across all participants and (2) individual values that varied in importance and quality between individuals. Universal priorities included feeling respected, clear communication, and being informed about and involved in their emergency care decisions. Individual values included preferences around the who and how of decision-making, attention to cognitive health, and degree of escalation of care. Several contextual factors shaped the appraisal of ED visits including the timing of evaluation and nature of the precipitating event (acute/unknown cause vs. chronic/known or suspected cause).

Findings suggest that interpersonal interactions, including being informed about care and involved in decisions, strongly influence the evaluation of ED visits for PLWD. These findings can support the development of person-centered outcome measures capable of evaluating these priorities.