Systematic Identification of Caregivers of Patients Living With Dementia in the Electronic Health Record: Known...

Systemically identifying caregivers in the electronic health record (EHR) is a critical step for delivering patient-centered care, enhancing care coordination, and advancing research and population health efforts in caregiving. Despite EHRs being effective in identifying patients through standardized data fields like demographics, laboratory results, medications, and diagnoses, identifying caregivers through the EHR is challenging in the absence of specific caregiver fields.

Recognizing the complexity of identifying caregiving networks of people living with dementia, this study aims to systematically capture caregiver information by combining EHR structured fields, unstructured notes, and free text.

Among a cohort of people living with dementia aged 60 years and older from Kaiser Permanente Colorado, caregiver names were identified by combining structured patient contact fields, that is, known contacts, with name-matching and natural language processing techniques of unstructured notes and patient portal messages containing caregiver terms.

Among the cohort of 789 people living with dementia, 95% (n=749) had at least 1 caregiver name listed in structured fields (mean 2.1 SD 1.1). Over 95% of the cohort had caregiver terms mentioned near a known contact name in unstructured encounter notes, with 35% having a full name match in unstructured patient portal messages. The natural language processing model identified 7556 "new" names in the unstructured EHR text containing caregiver terms among 99% of the cohort with high accuracy and reliability (F₁-score=.85; precision=.89; recall=.82). Overall, 87% of the cohort had a new name identified ≥2 near a caregiver term in their notes and portal messages.

Patterns in caregiver-related information were distributed across structured and unstructured EHR fields, emphasizing the importance of integrating both data sources for a comprehensive understanding of caregiving networks. A framework was developed to systematically identify potential caregivers across caregiving networks using structured and unstructured EHR data. This approach has the potential to improve health services for people living with dementia and their caregivers.