Advancing Family Medicine Through Dyadic Electronic Medical Record Linkage in Dementia Care.

Abstract (English)

Family physicians are well-positioned to support both persons living with dementia (PLWD) and their caregivers. However, current electronic medical record (EMR) systems do not capture the relational and interdependent nature of dementia care. Dyadic data, linking the records of persons living with dementia (PLWD) and their caregivers, could support more integrated, proactive, and personalized care. While there is growing interest in leveraging EMRs for this purpose, few systems enable routine dyadic linkage, limiting clinical utility and research capacity.This report describes the current state of dyadic EMR data linkage in Canada, drawing on a pilot study using the Canadian Primary Care Sentinel Surveillance Network (CPCSSN). We examined methods for identifying PLWD-caregiver dyads in primary care settings, including manual identification and algorithmic approaches using shared contact information. Both methods were feasible, but each faced challenges related to EMR compatibility, privacy regulations, and consent processes. The study highlights how CPCSSN infrastructure can be used to create de-identified, longitudinal data sets for research and surveillance, while also identifying critical gaps that limit clinical application.Our findings demonstrate that while EMRs offer a promising platform for linking dyadic data, system-level changes are needed to fully integrate caregiver information into routine care. This includes standardized fields, clearer privacy guidelines, and cross-sector data harmonization. Dyadic EMR linkage has the potential to inform research, improve quality of care, and guide policy development. Future efforts must balance innovation with feasibility and privacy, ensuring caregiver roles are visible and valued within primary care systems.Abstract also available in: عربي (Arabic); Deutsch (German); Español (Spanish); Francais (French); हिन्दी (Hindi); Indonesia (Indonesian); (Chinese); (Japanese); Portugues (Portuguese).