Community-based participatory research on Alzheimer's disease and related dementias among Tibetan Buddhist monks in South India: The Lifestyle Assessment and Monastic Aging Study (LAMAS)

INTRODUCTION: This protocol paper describes the methodology used in designing and conducting community-based participatory research (CBPR) to estimate the prevalence of Alzheimer's disease and related dementias (ADRD) among Tibetan Buddhist monks. The CBPR approach laid the groundwork to examine monastic lifestyles, including meditative and cognitive practices. METHODS: The study used a CBPR approach to examine the prevalence of ADRD and assess lifestyle and meditative and cognitive practices among Tibetan Buddhist monks. RESULTS: The study recruited 205 monks and collected a wide range of data, including monastic lifestyle, meditative and cognitive practices, mental health, sleep quality, physical measures, biospecimens, and other information. DISCUSSION: The study was a first of its kind to use CBPR in estimating the prevalence of ADRD among Tibetan monks. The CBPR approach enabled us to engage with the monastic community at every phase of the study and provided a framework to design culturally sensitive surveys and cognitive measures. Highlights: The study was the first of its kind to use a community-based participatory research (CBPR) approach to estimate the prevalence of Alzheimer's disease and related dementias (ADRD) among Tibetan Buddhist monks in South India. The CBPR approach allowed us to work closely with monastic partners and engage with them at every phase of the study. Such intimate collaboration facilitated the incorporation of relevant and appropriate Tibetan Buddhist ideas and concepts in designing study survey and specific questions related to their lifestyle, including cognitive practices. The successful implementation and conclusion of the study demonstrates the feasibility of conducting a larger epidemiological study—first cross-sectional and then longitudinal—in this population.