eDEM-CONNECT: agitation ontology for the intelligent support of informal caregivers of people with dementia

People with dementia (PwD) face cognitive decline, placing added stress on family caregivers. Challenging behaviour, such as agitation, is one of the prominent behaviours exhibited by PwD, and family caregivers are often faced with the challenge of finding an appropriate intervention strategy to cope with it. To address this problem, current research focuses on developing digital solutions for the support of unprofessional caregivers, allowing them to ease the stress factor while dealing with agitation. A major challenge in any digital solution is the required domain knowledge. This knowledge includes information about the types of agitated behaviour, living and socio-economic conditions of the PwD and non-pharmaceutical interventions, which the caregiver can apply. We refer to this structured knowledge as an ontology. This study focuses on the development of the eDEM-Connect Ontology: Ontology of Dementia-related Agitation and Relationship between Informal Caregivers and Persons with Dementia (EDEM-CONNECTONTO) as the formalised domain knowledge for providing adequate support to caregivers. The knowledge is elicited through a systematic literature review, analysis of existing ontologies, workshops with experts, and interviews with informal caregivers. EDEM-CONNECTONTO consists of 252 Concepts, 16 relations, and 241 individuals. The ontology is implemented in the Web Ontology Language (OWL) and validated with the Protégé ontology development software. The results from the evaluation show that it meets the standard for biomedical ontologies. Furthermore, EDEM-CONNECTONTO is applied in several tasks related to the development of digital support systems for caregivers of PwD, demonstrating its practical applicability within the domain. The proposed ontology provides a structured semantic foundation for ontology-guided data annotation, knowledge graph construction, and GraphRAG-based caregiver-support applications. By formally modelling types of agitation, causes, consequences, PwD-caregiver relations, and non-pharmacological interventions, EDEM-CONNECTONTO enables explainable digital tools that support informal caregivers in identifying agitation patterns and selecting appropriate care strategies, thereby contributing to improved caregiver support and reduced caregiving stress.