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.
To support transparency and usability, this companion site provides access to supplemental materials referenced in the scoping review.
Purpose of the Companion Website
This companion website was developed to improve access to the comprehensive data generated through our scoping review. Given the scope of the findings, particularly the detailed psychometric profiles of 157 validated instruments and the characteristics of their validation samples, this site provides an interactive platform for exploring supplemental materials that exceed the space constraints of the published article.
Specifically, this site provides:
- Comprehensive table summarizing the psychometric properties of each identified instrument, including reliability, validity, responsiveness, and conceptual focus. Supplementary tables are also organized by instrument publication decade and country of origin.
- Detailed information on validation samples, including demographic and methodological characteristics, to support critical appraisal of generalizability and equity considerations. Supplementary tables by publication decade and nation are also provided to allow users to explore patterns in sample selection and representation across time and place.