Grant: Planning and Dissemination Grant - Institute Community Support

People with dementia (PLWD) often experience pain due to chronic conditions, falls, and injuries but are unable to express it, making it challenging for caregivers and healthcare personnel to assess and treat their pain appropriately. Undetected and untreated pain can cause depression, verbal aggression, wandering, agitation, and physical aggression, which make pain assessment more complicated and can significantly reduce their quality of life and increased stress for caregivers. While methods such as observation-based pain measures exist, they are unable to adequately capture the complexity of pain in people who cannot articulate, creating a major vacuum in care. To address this issue, we aim to create a comprehensive innovative tool called the PainSense application to more correctly and reliably detect pain in nonverbal individual with dementia. The goal is to develop a system that assists caregivers and healthcare providers in immediately recognizing and managing pain, so enhancing the well-being of people with dementia while reducing caregiver load. As a first step, this project will bring together caregivers, healthcare professionals, researchers, and technology developers in a hybrid in-person and virtual gathering. During this conference, participants will discuss their experiences, identify gaps in current tools, and help build the PainSense app's essential features. This partnership guarantees that the application is usable, adaptive, and useful in real-world caregiving scenarios. This planning phase will lay the groundwork for future research and development of the PainSense app. By incorporating a diverse set of stakeholders, we hope to develop a tool that will transform pain evaluation in dementia care, benefiting both patients and caregivers.