Designing Dementia Caregiver Empowerment Interventions through a Simulation: A Conceptualization Study

Agitation episodes influence the quality of life of both the person with dementia (PWD) and caregivers. Caregiving is challenging, with high workloads and barriers such as fatigue, lack of sleep, and unpredictable episodes of agitation among PWD. Advanced technologies such as cyber-human systems are increasingly considered as means to alleviate some of the stress experienced by caregivers of PWD. To ensure user-centered design of cyber-human systems, it is important to conceptualize the sociotechnical challenges using a cybersociophysical framework and problem space within the context of dementia caregiving, especially as it relates PWD agitation, a major contributor to psychosocial stress. An interdisciplinary collaboration was implemented to use a scaled world, and behavioral and computational simulation as a beginning step to conceptualize the cybersociophysical systems space and the complex interplay between physical space, environmental factors, and the dyad of study (caregiver + PWD). In this research, a simulation study was conducted to test a structural equation model (SEM) that demonstrated the influence of behavioral and environmental factors as well as caregiver disempowerment on agitation propensity. The outcomes of the SEM presented the possibility of developing interventions using simulated data and provided information to deploy a more effective approach in actual residential dwellings. Recommendations for future studies are to obtain frequent caregiver observations, apply a means to prioritize the most important environmental factors, and combine both psychometric measures and behavioral measures to identify antecedents to agitation.