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2023 Advancing Research on Care and Outcome Measurements (ARCOM)

Person-Centered Outcome Measures for AD Patient Emergency Care Experiences

Could a new tool help emergency departments better meet the needs of people living with dementia?

Andrea Gilmore-Bykovskyi, Ph.D.
University of Wisconsin-Madison
Madison, WI - United States


People living with dementia (PLWD) tend to visit emergency departments more often than individuals without a dementia diagnosis. However, there is little research available to understand the experiences of PLWD during these visits. Most related research focuses on clinical outcomes, such as emergency department revisit rates or mortality.

Recent research by Dr. Andrea Gilmore-Bykovskyi and colleagues has found that people living with dementia and their caregivers often have priorities that are not addressed when visiting an emergency department. This disconnect could affect the quality of care PLWD receives.

Research Plan

Dr. Gilmore-Bykovskyi will develop a Person-Centered Outcome Measure (PCOM) that could be used by PLWD to share their experiences during emergency department visits. This new tool will be developed in collaboration with PLWD.

Dr. Gilmore-Bykovskyi’s team will conduct a series of semi-structured interviews with PLWD to identify common emergency department care priorities. These interviews will use strategies drawn from cross-cultural research to ensure that diverse perspectives are recognized and included. Then, the team  will use themes that emerged from the interviews to develop initial items for the PCOM. An expert panel and PLWD will help review and refine the items before the PCOM is finalized. Dr. Gilmore-Bykovskyi will also seek input on ways the tool might be used most effectively during a visit to the emergency department.


A standardized tool to measure the experiences of PLWD visiting the emergency department could help providers better align care processes with their  needs. It could also help emergency department providers evaluate new interventions designed to improve outcomes for PLWD.

The ARCOM Grant Program was developed jointly with Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for Persons Living With Alzheimer’s and Dementia (LINC-AD).

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