Abstract
BACKGROUND: Family and unpaid caregivers play a crucial role in supporting people living with dementia; yet, they are not systematically identified and documented by health systems. OBJECTIVE: The aims of the study are to determine the extent to which caregivers are currently identified and documented in the electronic health record (EHR) and to elicit the perspectives of caregivers and clinical staff on how to best identify, engage, and support caregivers of people living with dementia through the EHR. METHODS: People with dementia were identified based on International Classification of Diseases, Tenth Revision (ICD-10) codes or dementia medications in the EHR. A chart review of people with dementia characterized how caregiver information was documented and whether caregivers had shared access to the patient portal. Caregivers of eligible people with dementia were then recruited through mailed letters and follow-up calls to the homes of people with dementia. We conducted semistructured interviews with caregivers, clinicians, and staff involved in the care of people with dementia within 2 health systems in Maryland and Colorado. Transcripts were analyzed using a mixed inductive and deductive approach. RESULTS: Caregivers of people with dementia (N=22) were usually identified in the "contact information" or "patient contacts" tab (n=20, 91%) by their name and relation to the people with dementia; this tab did not specify the caregiver's role. Caregivers were also mentioned, and their roles were described to a varying degree in clinical notes (n=21, 96%). Of the 22 caregivers interviewed, the majority (n=17, 77%) reported that the people with dementia had additional caregivers. The presence of multiple caregivers could be gleaned from most charts (n=16, 73%); however, this information was not captured systematically, and caregivers' individual contributions were not explicitly recorded. Interviews with 22 caregivers and 16 clinical staff revealed two major themes: (1) caregiving arrangements are complex and not systematically captured or easy to locate in the EHR and (2) health systems should develop standardized processes to obtain and document caregiver information in the EHR. CONCLUSIONS: This exploratory chart review and qualitative interview study found that people with dementia frequently have multiple caregivers, whose roles and needs are captured inconsistently in the EHR. To address this concern, caregivers and clinical staff suggested that health systems should develop and test workflows to identify caregivers, assess their needs at multiple touchpoints, and record their information in extractable EHR fields.