Collecting, Sharing, and Using Information for Person-Centered Dementia Care: Perspectives of Residents, Care Partners, and Staff in Low-Resource Long-Term Care Settings.

Abstract

This study explored stakeholder perspectives on how information is collected, shared, and used to support person-centered dementia care in low-resource long-term care settings. This qualitative study was conducted in four long-term care settings situated in federally designated medically underserved areas (two rural, two urban). In-depth semi-structured interviews were conducted with administrative leaders (n = 7), direct care staff (n = 20), and residents (n = 16) with their care partners (n = 16), with transcripts thematically analyzed using NVivo14. Identified themes describe perspectives on collecting, sharing, and using information about residents: diverse mechanisms for collecting information; channels for sharing information; ethical considerations for information sharing; and person-centered approaches. These findings shed light on what matters most to residents with dementia and care providers for optimizing information collection and sharing to deliver high-quality dementia care within low-resource settings.