Instruments measuring the roles, experiences, and identities of caregivers of individuals with Alzheimer's disease and related dementias: A scoping review

Abstract

As the demand for care for those living with Alzheimer's disease and related dementias (ADRD) increases, effective instruments to assess the impact of caregiving among a diverse population of family and friend caregivers are needed to inform tailored interventions. This scoping review evaluated instruments used to measure the experiences of caregivers for individuals with ADRD, aiming to assess their psychometric properties, utility, and inclusivity. Searching five databases from 1980 to 2024, we identified 141 studies reporting on 157 instruments. Most tools emphasized negative caregiving aspects like burden and distress, while fewer addressed positive elements such as resilience or satisfaction. Instruments varied widely in psychometric rigor, and validation samples often lacked diversity, typically involving spousal or child caregivers, thus limiting generalizability. The review underscores a critical need for updated, culturally sensitive tools that reflect the broad, multifaceted experiences of today's caregivers across diverse racial, ethnic, and family backgrounds.