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

## TL;DR

This study explores what matters most to people with dementia and their caregivers during emergency department visits, emphasizing respect, communication, and personalized care.

## Contribution

The study identifies universal and individual priorities for emergency care from the perspective of people with dementia and their care partners.

## Key findings

- Universal priorities include feeling respected, clear communication, and involvement in care decisions.
- Individual values like decision-making preferences and care intensity vary between participants.
- Respectful interpersonal interactions strongly influence overall satisfaction with emergency care.

## Abstract

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.

Key points
○Emergency department patients living with dementia and their care partners identified universal priorities including knowing who is providing their emergency care, receiving respectful and compassionate treatment, and being informed in a manner attuned to cognitive changes.○Individual values such as preferences for involvement in decision‐making, care intensity, and cultural‐linguistic congruence are more variable and shape participants' evaluations of their emergency care experience.○While both universal and individual priorities shape emergency care experiences, the interpersonal quality of care–particularly whether participants felt respected—was a dominant driver for overall satisfaction, even when other care priorities were not met, suggesting that more sensitive outcome measures of emergency care for populations with dementia should incorporate a breadth of domains.
Why does this paper matter?
○This study directly engaged people living with dementia and their care partners to identify what matters most to them during their emergency care experience. Findings highlight the importance of including people living with dementia in research aimed at improving emergency care quality and offer a vital first step for developing dementia‐sensitive outcome measures to evaluate and improve emergency care quality.

Key points
○Emergency department patients living with dementia and their care partners identified universal priorities including knowing who is providing their emergency care, receiving respectful and compassionate treatment, and being informed in a manner attuned to cognitive changes.○Individual values such as preferences for involvement in decision‐making, care intensity, and cultural‐linguistic congruence are more variable and shape participants' evaluations of their emergency care experience.○While both universal and individual priorities shape emergency care experiences, the interpersonal quality of care–particularly whether participants felt respected—was a dominant driver for overall satisfaction, even when other care priorities were not met, suggesting that more sensitive outcome measures of emergency care for populations with dementia should incorporate a breadth of domains.

Emergency department patients living with dementia and their care partners identified universal priorities including knowing who is providing their emergency care, receiving respectful and compassionate treatment, and being informed in a manner attuned to cognitive changes.

Individual values such as preferences for involvement in decision‐making, care intensity, and cultural‐linguistic congruence are more variable and shape participants' evaluations of their emergency care experience.

While both universal and individual priorities shape emergency care experiences, the interpersonal quality of care–particularly whether participants felt respected—was a dominant driver for overall satisfaction, even when other care priorities were not met, suggesting that more sensitive outcome measures of emergency care for populations with dementia should incorporate a breadth of domains.

Why does this paper matter?
○This study directly engaged people living with dementia and their care partners to identify what matters most to them during their emergency care experience. Findings highlight the importance of including people living with dementia in research aimed at improving emergency care quality and offer a vital first step for developing dementia‐sensitive outcome measures to evaluate and improve emergency care quality.

This study directly engaged people living with dementia and their care partners to identify what matters most to them during their emergency care experience. Findings highlight the importance of including people living with dementia in research aimed at improving emergency care quality and offer a vital first step for developing dementia‐sensitive outcome measures to evaluate and improve emergency care quality.