Unlinked medical records hinder dementia care for patients and caregivers

Medical care for people living with dementia often hinges on a quieter partner: the caregiver who manages medications, appointments, daily routines, and safety. Yet in most electronic health record systems, these two lives—patient and caregiver—are treated as separate data universes. A new Canadian study highlights how this design choice can become a practical barrier to better dementia care, and proposes workable technical paths forward.

Using the Canadian Primary Care Sentinel Surveillance Network (CPCSSN), researchers examined whether primary care electronic medical records could be linked between dementia patients and their caregivers. The system draws on de-identified data from primary care practices nationwide, enabling privacy-preserving research while testing real-world linkage strategies.

The team evaluated two approaches. One relied on manual identification by clinic staff, using clinic knowledge to determine caregiver–patient relationships. The other used an algorithm that matched shared chart attributes such as phone numbers and other overlapping information embedded in the records.

Both strategies succeeded in identifying likely dyads. However, the authors emphasize that success does not equal scalability. Technical friction emerged from differences in electronic medical record compatibility across clinics, limiting how consistently linkage inputs could be extracted.

Even when data could be aligned, provincial privacy policies and consent requirements shaped what could be accessed and how. These legal and ethical constraints mean that an approach that works in one region may not transfer smoothly to another without additional governance.

At the center of the problem is a structural limitation: most electronic medical records do not include dedicated caregiver fields. Without standardized data models that represent caregiver relationships, health professionals and researchers lack a reliable, queryable mechanism to connect records.

Clinically, the absence of linkage removes context. Historically, family charts were often stored together, helping physicians see the caregiver’s situation alongside the patient’s symptoms and needs. The study argues that dementia care could benefit from tooling designed around how family physicians actually practice—by supporting dyadic, relationship-aware records rather than siloed entries.

In short, the research charts a path toward dementia-care systems that reflect real relationships, while underscoring that technical feasibility must be paired with privacy-aware design and standardized record structures to move from pilot success to routine care.