“The pandemic is highlighting some of the challenges to documenting and honoring care preferences for assisted living community residents with ADRD.”
Ellen McCreedy, PhD, MPH is interested in improving the quality of life for people living with advanced dementia. Her research goals are to reduce the amount of futile and burdensome care received at the end of life; and to provide comfort, meaning, and moments of joy to people living with dementia and their families. Professor McCreedy received her MPH in Global Health from the University of South Florida, her PhD in Health Services Research from the University of Minnesota, and recently completed a postdoctoral research fellowship at Brown University, Center for Gerontology and Healthcare Research. Dr. McCreedy is directing a pragmatic trial of a personalized music intervention to reduce agitation and isolation in nursing home residents living with dementia.
RATIONALE: Assisted living communities (ALCs) serve over 800,000 vulnerable older adults at high risk of developing complications and dying from COVID-19. Documenting care preferences in the form of an advance directive or medical order reduces receipt of unwanted care during and after the pandemic.
OBJECTIVE: The primary objective of this embedded, pragmatic, cluster-randomized trial (ePCT) is to test the effects of a COVID-specific, advance care planning (ACP) intervention on documentation of care preferences in a target cohort of assisted living community (ALC) residents with Alzheimer’s disease and related dementias (ADRD) from 150 ALCs in 3 states.
SETTING: 150 assisted living communities (ALCs) in Minnesota, Wisconsin, and Florida.
POPULATION: People living with ADRD and their family members.
DESIGN: ALCs will be randomly assigned to one of three groups: 1) Usual care; 2) ACP informational website and video sent electronically to family members; or 3) ACP informational website and video sent electronically to family members plus a follow-up ACP discussion with a Bluestone clinician.
OUTCOMES: The primary clinical outcome will be new documentation of a preference for comfort-focused care in the EHR over four months; secondary clinical outcomes will be new documentation DNR or DNI orders in the EHR over four months and the proportion of enrolled residents with any hospitalizations over four months. Implementation outcomes include counts of physician calls with family members and counts of website and video views.
IMPACT: Little is known about the ACP process for ALC residents with ADRD during COVID-19, and the barriers to honoring care preferences in this setting. This ePCT leverages the EHR of a large ALC physician group to identify eligible residents and family members, deliver the intervention, and assess resident outcomes.