Perspectives from persons living with dementia and their caregivers on emergency department visits, care transitions, and outpatient follow-up: A qualitative study

Abstract

Background: Persons living with dementia (PLWD) experience frequent and costly emergency department (ED) visits, with poor outcomes attributed to suboptimal care and postdischarge care transitions. Yet, patient-centered data on ED care experiences and postdischarge needs are lacking. The objective of this study was to examine the facilitators and barriers to successful ED care and care transitions after discharge, according to PLWD and their caregivers.

Methods: We conducted a qualitative study involving ED patients ages 65 and older with confirmed or suspected dementia and their caregivers. The semistructured interview protocol followed the National Quality Forum's ED Transitions of Care Framework and addressed ED care, care transitions, and outpatient follow-up care. Interviews were conducted during an ED visit at an urban, academic ED. Traditional thematic analysis was used to identify themes.

Results: We interviewed 11 patients and 19 caregivers. Caregivers were more forthcoming than patients about facilitators and challenges experienced. Characteristics of the patients' condition (e.g., resistance to care, forgetfulness), the availability of family resources (e.g., caregiver availability, primary care access), and system-level factors (e.g., availability of timely appointments, hospital policies tailored to persons with dementia) served as facilitators and barriers to successful care. Some resources that would ameliorate care transition barriers could be easily provided in the ED, for example, offering clear discharge instructions and care coordination services and improving patient communication regarding disposition timeline. Other interventions would require investment from other parts of the health care system (e.g., respite for caregivers, broader insurance coverage).

Conclusions: ED care and care transitions for PLWD are suboptimal, and patient-level factors may exacerbate existing system-level deficiencies. Insight from patients and their caregivers may inform the development of ED interventions to design specialized care for this patient population. This qualitative study also demonstrated the feasibility of conducting ED-based studies on PLWD during their ED visit.