Multi-Stakeholder Engagement for Interdisciplinary Telehealth in Lewy Body Dementia

Project Summary/Abstract Lewy body dementia (LBD) is the second most common neurodegenerative dementia in the United States and one of the Alzheimer’s disease-related dementias (ADRDs). It affects 1.4 million Americans and their caregivers. Individuals with LBD are affected by both physical and cognitive impairments, and eventually require continuous supervision leading to high caregiver burden. A patient-centric specialized interdisciplinary care model, the Neuromedicine Service and Science Hub model, addresses physical, cognitive, nutritional, social support, and caregiver needs. However, this model of care is not easily accessible or offered across the country. The overarching goal of my proposal is to improve patient and caregiver health outcomes by increasing access to specialty care for individuals with LBD and their caregivers. The objective of the proposed study is to convert this in-person patient-centric interdisciplinary care model to a virtual platform using stakeholder engagement (Aim 1). After adapting the care model to virtual delivery, I will conduct a pilot randomized, controlled clinical trial including 30 individuals with LBD and their caregivers for 6 months to determine the feasibility, acceptability, and appropriateness of this intervention, as well as to obtain pilot outcome data (Aim 2). Additionally, the study will pilot the usability of a wearable sensor to objectively assess patient outcomes, including life space mobility (Aim 3). Life space mobility, a measure of the area in which someone moves through, closely correlates with quality of life, falls, and mortality. My research goal is to establish and iteratively improve a virtual interdisciplinary model of care allowing patients with LBD and their caregivers to access sub-specialty care from their home. Through this K23, I have organized an interdisciplinary mentoring committee and training plan to develop expertise in pragmatic clinical trial design, dissemination and implementation science, qualitative research methods, data analysis, and research conduct. The mentoring team consists of world-renowned experts in interdisciplinary models of care in neurodegenerative conditions (Michael Okun, Benzi Kluger), stakeholder engagement and qualitative research in LBD (Melissa Armstrong, James Galvin), dissemination and implementation science (Stephanie Staras) and wearable technology (Todd Manini). This research will be conducted at the Fixel Institute for Neurological Diseases at the University of Florida, which has the integrated telemedicine capabilities, interdisciplinary care framework, and clinical/research resources to conduct this study. The expertise and skills gained by this 5 year career development award will help accomplish my long-term career goal to become an independent investigator researching effective care delivery to individuals with LBD and their caregivers.