ARCOM Study to Measure Dementia Emergency Care Experiences 

Measuring what Matters

What is our ARCOM-funded study, and why is it important?

ARCOM is a grant program led by the Alzheimer’s Association, which stands for Advancing Research on Care and Outcome Measures (ARCOM). The ARCOM Program has supported a range of studies to advance the development or refinement of dementia care and outcome measures across diverse populations and setting of care. The Gilmore-Bykovskyi received an ARCOM award titled “Person-centered Outcome Measures for Alzheimer’s disease Patient Emergency Care Experiences.”

More than half of the 6 million people experiencing memory changes in the United States visit the emergency department each year. These emergency department visits can be incredibly stressful and challenging for people experiencing memory changes, whose communication and care needs are often not well recognized and challenging to meet in this environment. 

This study will allow the team to develop a better understanding of the priorities of people experiencing memory changes and their caregivers when they visit the emergency department. It will also support the development of new tools to measure those priorities, enabling assessment of aspects of the emergency care experience that are most important to those living with dementia. 


Who is eligible for participation?
  • People experiencing memory changes who have received care in an emergency department recently. This person should be able to communicate and engage in decisions about their care. 
  • Family or friend caregivers to a patient experiencing memory changes who has been in an emergency department recently. 
  • Depending on their preference, people experiencing memory changes and their caregivers may participate together or separately.
What does participation involve?
  • Participation is meant to be convenient for participants and it can involve:
    • One 10-15 minute interview conducted in the emergency department or hospital.
    • A 30-60 minute interview conducted in a private location that is convenient for you, like your home or your local library.
    • A 30-60 minute interview over the phone. 
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