There were 5.8 million persons living with dementia (PLWD) in the U.S. in 2020. PLWD have higher ED utilization and 48% higher mean expenses for D visits than persons without dementia. One significant driver of excess ED utilization is the poor care transitions from ED to home for PLWD. While ED to home care transitions are a particular challenge for older (65 years and older) ED patients in general, they are exacerbated for PLWD and with additional complexities for the 60% of PLWD without a formal diagnosis of dementia, as they lack access to specialized care professionals and community resources. Although previous studies have engaged PLWD and their caregivers in examining many aspects of their access and utilization of health care, ED-based studies, particularly involving care quality and care transitions, are severely lacking. This study’s aim is to conduct a qualitative study of PLWD and their care partners (family or other caregivers) in the ED to improve understanding of the facilitators of, and barriers to, optimal ED care and care transition from ED to home. Based on published qualitative studies, our pilot study will require up to 30 participants to reach the qualitative end point of thematic saturation. With the well-documented poor access to care and disease management by Hispanic patients, we will recruit a purposeful sample of 25% Hispanic participants. As 60% of PLWD are undiagnosed, we will not recruit by documented diagnosis of dementia alone, but will leverage the ongoing NIH-funded IMPACT study (NIA U54AG063546) and recruit persons with suspected dementia who answered yes to a screening question “do you have thinking or memory problems in the past year”. We will recruit a diverse study population of persons with confirmed dementia, with suspected but undiagnosed dementia, and their respective care partners. Following guidance from this institutional IRB, Alzheimer’s Association National Board of Directors, and the Alzheimer’s Society to obtain consent in an ethical manner, PLWD will be assessed for capacity to consent by using the UCSD Brief Assessment of Capacity to Consent (UBACC). Persons lacking capacity to provide consent are excluded unless consent from a legally authorized representative is obtained. Participants will undergo a 30-minute in-person interview with open ended questions to elicit their perspective on facilitators of, and barriers to, optimal ED care and ED to home care transitions, with an emphasis on the participants’ perspective and “what matters most” to them. We will conduct a two-stage analysis, using traditional applied thematic analysis and dyadic analysis. The results of the analysis may help guide the development of person-centered and culturally sensitive strategies to optimize care in the ED for PLWD and effective care transitions from ED to home. The findings of this pilot study will be also used to develop a future larger multi-site study to examine ED care and care transitions among PLWD with a more socio-demographically and geographically diverse populations, involving a greater number of distinct race-ethnic groups and with over sampling of rural residents, and test patient-centered interventions to improve care.
|Effective start/end date||7/1/22 → 12/31/22|
- Yale University (CON-80003990 (GR118438)//5R61AG069822-02)
- National Institute on Aging (CON-80003990 (GR118438)//5R61AG069822-02)
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