Digital Measurement of Subjective Experiences in Alzheimer Disease and Related Dementias (AD/ADRD)

Symptoms such as loss of pleasure, agitation, and sadness are subjective experiences that contribute significantly to caregiver burden and health care costs in Alzheimer disease and related dementias (AD/ADRD). However, traditional self-report measures of subjective experiences are limited in AD/ADRD due to cognitive impairments and awareness. Passive sensing, which collects data without active participant input, has emerged as a promising approach to quantify aspects of subjective experiences. Smartphones, wearables, and in-home sensors can quantify mobility, physiology, speech, and social interaction markers of constructs relevant to AD/ADRD. Available research indicates potential but is largely at the proof-of-concept stage. In this Commentary, we discuss several roadblocks to future translation of passive sensing in measuring subjective experiences in AD/ADRD, including technical implementation, data harmonization, validation, ethical and privacy principles. Addressing these challenges could lead to transformative applications to care for AD/ADRD, enabling precise monitoring of behavioral symptoms and related treatment targets, ultimately improving quality of life for persons with AD/ADRD and their caregivers.