Dementia Caregiver Experiences and Recommendations using the BESI System in the Home Setting: A Pilot Study with Descriptive Qualitative Design (Preprint)

BACKGROUND Caregiver burden associated with dementia-related agitation is one of the most common reasons a community-dwelling person living with dementia (PLWD) transitions to a care facility. The Behavioral and Environmental Sensing and Intervention (BESI) for Dementia Caregiver Empowerment system uses sensing technology, smartwatches, tablets, and data analytics to detect and predict agitation in PLWD and to provide just-in-time notifications and dyad-specific intervention recommendations to caregivers. The BESI system has shown that there is a valid relationship between dementia-related agitation and environmental factors and that caregivers prefer a home-based monitoring system. OBJECTIVE This study aimed to obtain input from caregivers of PLWD on the value, usability, and acceptability of the BESI system in the home setting as well as their recommendations and insights for the next stage of system development. Methods. A descriptive qualitative design with thematic analysis was used to analyze ten semi-structured interviews with caregivers. A medical case study model was introduced to incorporate clinical and qualitative data and better inform the intervention recommendations piloted. METHODS A descriptive qualitative design with thematic analysis was used to analyze ten semi-structured interviews with caregivers. A medical case study model was introduced to incorporate clinical and qualitative data and better inform the intervention recommendations piloted. RESULTS Post-deployment caregiver feedback about the BESI system and the overall experience was generally positive. Caregivers acknowledged the acceptability of the system by noting ease of use and saw the system as a fit for them. Functionality issues such as timeliness in agitation notification and simplicity in the selection of agitation descriptors on the tablet interface were identified. Caregivers indicated a desire for more word options to describe agitation behaviors. Caregivers reported mild to moderate burden with caring for their PLWD but did not report significant distress. Agitation intervention suggestions were positively received in the caregiver interviews. Case study analyses showed that the intervention suggestions were well received and the decreased number of agitations helped confirm that BESI has good value and acceptability. The categories of ‘caregiver needs’ and ‘interpersonal communication’ were both received equally positively. Agitation scores, caregiver distress, caregiver depression, and stage of dementia in the PLWD were judged pertinent. Thematic analysis suggested a cascade of subjective experiences and yielded the themes of Usefulness and Helpfulness. CONCLUSIONS Caregiver acceptance of this developing technology was consistently demonstrated by tolerance, commitment to its use, and in feedback received on ways to improve the system. The themes of Usefulness and Helpfulness were discerned thematically and support the use of caregiver knowledge and experience to inform further development of the technology. The case study method provided helpful insights for the research team in determining associations between clinical data, sensor data, and the just-in-time notifications and intervention recommendations.