Interdisciplinary Infrastructure for Aging Research: Establishing the Lucidity in Alzheimer’s and Dementia (LEAD) Network

PROJECT ABSTRACT An estimated 7 million people live with Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) in the United States alone. While AD/ADRD is characterized by progressive losses in cognition and functioning, a rapidly developing body of evidence demonstrates that some individuals with advanced AD/ADRD exhibit a seemingly implausible transient recovery of function, evidenced by a return of communication and/or functional behaviors after these abilities were believed to be irretrievably lost. These events, referred to as Lucid Episodes (LE), represent a unique presentation of resilience in advanced disease. Until recently, research on LE in AD/ADRD had been sparse. Recent findings from a set of NIA- funded studies, however, demonstrate that LE occur throughout the late-stage disease course, including near end of life, and have marked effects on caregivers and their decision-making. Findings from these and other studies highlight the considerable measurement deficits and limitations that need to be addressed in order to advance systematic investigation on LE and their impact on care delivery and caregiving. Coordinated efforts and interdisciplinary collaborations are needed to address these measurement challenges. To address this need, we propose to establish the Lucidity in Alzheimer’s and Dementia (LEAD) Network which will assemble an integrated research infrastructure to facilitate interdisciplinary collaborations, bolster research capacity, and advance measurement science on LE in AD/ADRD. The LEAD Network will first identify research priorities and strategies to advance measurement of LE in AD/ADRD and their impact on care delivery and caregivers (R61 Phase, Aim 1). Then, the LEAD Network will establish an operational research infrastructure to support the development, testing, refinement, and dissemination of measures for LE in AD/ADRD, including a Common Data Elements (CDE) repository and secondary data resource library (R61 Phase, Aims 2, 3). Next, we will leverage this infrastructure to support pilot studies that address identified research priorities (R33 phase). Specifically, the LEAD Network will provide direct support to 6 pilot projects, including ongoing consultation, mentoring, and post-award guidance, fortifying awardees to transition toward full-scale funded projects (R33, Aim 1). Additionally, the LEAD Network will disseminate resources to support research on measurement of LE by a) holding regular training workshops, b) hosting webinars and giving conference presentations, c) providing consultation, and d) sponsoring a conference for dissemination of findings from measurement studies and interdisciplinary networking (R33, Aim 2). Collectively, these activities will create and solidify a sustainable infrastructure upon which future data and resources can be integrated and nurture interdisciplinary relationships and networks necessary to catalyze investigations to advance measurement of LE in AD/ADRD.