SCH: INT: Collaborative Research: BESI: Behavioral and Environmental Sensing and Intervention for Dementia Caregiver Empowerment

Caregiver burden, stress, and depression resulting from agitation exhibited by some people with dementia (PWD) are the primary reasons cited for PWD transitioning from aging-in-place to long-term care facilities. Non-pharmacological interventions provided by caregivers (e.g., distraction, providing rest, calming the environment, speaking softly, gentle touch, favorite music selections, etc.) can reduce the frequency and severity of agitation in PWD. However, agitation can be unpredictable and influenced by the environment, and early signs of agitation often go undetected and can escalate to aggressive agitation that is more difficult to manage. As a result, most methods used to deal with agitation in dementia are reactive rather than proactive and are administered too late in an agitation escalation to be effective. A tool to predict agitation episodes and detect early stages of agitation would empower caregivers to intervene early and ultimately reduce agitation, thus reducing caregiver burden and extending aging-in-place and the associated quality-of-life and cost benefits. This caregiver empowerment based strategy to PWD care could have a significant impact on the ability of PWD to age-in-place. Community outreach efforts will be conducted that engage PWD and their caregivers throughout the project, and the resulting knowledge products can be disseminated to a range of stakeholders across various sociocultural ecosystems, from researchers to family members and respite providers. The project rests on the practice of universal access, demonstrating a design that is beneficial to and accessible by the broadest range of user groups. This project will also establish a framework for a collaborative approach between engineers, clinicians, and the caregiving community to address critical healthcare needs, which will be the basis of new course modules and conference workshops.

This project will overcome the fundamental scientific barriers to realizing such a tool with a three-phase research plan to employ Behavioral and Environmental Sensing and Intervention. First, a system of body-worn and in-home sensors will be developed to provide continuous, non-invasive agitation assessment and environmental context monitoring. Second, this system will be deployed in the homes of community-dwelling PWD to model the relationship between agitation and the environment and to identify features of early-stage agitation, both of which will inform the development of real-time caregiver notification strategies. Third, proof-of-concept for will be demonstrated through a human subject pilot study, with caregivers receiving real-time notifications to alter the environment in advance of probable agitation episodes and to administer PWD interventions in the early stages of agitation. Successful completion of this 3-phase project will motivate a follow-up large-scale proof-of-practice study.The investigative team combines expertise in technology function (computer engineering), accessibility (human centered design), and applicability (medical research and clinical care) to address fundamental challenges of multimodal sensing system-of-systems, modeling cyber-socio-physical system dynamics, and real-time notifications - all within the context of a critical societal need. Diverse sensor streams will be aggregated by fusing assorted data types across multiple time scales, aggregated data will be analyzed using novel agitation assessment and environmental characterization methods, extracted information will be used to develop dynamic system models, and customized automated notifications will empower caregivers to intervene before agitation escalation - all while meeting real-time intervention requirements. These models will be PWD-caregiver dyad specific, requiring dynamic in-situ training, and will present new ontologies for cyber-socio-physical systems that incorporate contexts, technologies, and social dyads to predict and mitigate disruptive neurological events. Ontologies for complex systems interventions in dementia do not yet exist but will emerge from the exploratory, integrative, and analytical efforts of this project team.

For further information on this project, see the project web site: http://wirelesshealth.virginia.edu/content/BESI