Barriers to dementia care arise when medical records of people living with dementia are not linked with medical records of their caregivers

Barriers to Dementia Care Arise When Medical Records of People Living with Dementia Are Not Linked with Medical Records of Their Caregivers 

Most electronic health records create barriers to dementia care by offering no standard way to identify or connect medical records of patients living with dementia with their caregivers’ health records. This report describes a Canadian pilot study that examined ways to link the primary care health records of patients living with dementia to those of their caregivers in primary care. The report details methods for making this possible and highlights critical gaps that limit clinical application. The pilot study used the Canadian Primary Care Sentinel Surveillance Network (CPCSSN), a national network that collects de-identified electronic medical record (EMR) data from primary care practices in Canada. Researchers tested two methods: manual identification by clinic staff and an algorithm matching shared chart details such as a phone number. Both methods worked. However, each method faced barriers, including EMR incompatibility, varying provincial privacy rules, and consent requirements. A core barrier was that EMRs lack dedicated fields for caregiver information, making it difficult for health care professionals and researchers to access and connect data.

Why It Matters: Historically, a family’s charts may have been located together in one folder, giving physicians the context to see a patient within their family and deliver more personalized care. Designing tools that match the way family medicine physicians practice is a practical way to better support both physicians and their patients.

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

Corresponding Author: Annie Robitaille, PhD, et al

Centre of Excellence in Frailty-Informed Care, Perley Health, Ottawa

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