Abstract
Background: As the demand for informal care for those living with Alzheimer’s disease and related dementias (ADRD) continues to grow, effective instruments are needed to assess the impact of caregiving across diverse populations of family and friend caregivers. We conducted a scoping review to identify instruments that assess constructs related to the roles, experiences, and identities of ADRD caregivers, with the goal of evaluating their utility, applicability, and generalizability.
Methods: Following the Joanna Briggs Institute Scoping Review guidelines and the PRISMA-ScR framework, we searched five databases (PubMed, Scopus, Embase, PsycINFO, CINAHL) for publications from 1980 to 2024. Eligible studies described the development of instruments for informal ADRD caregivers, reported psychometric properties, and detailed the characteristics of validation samples. Screening and data extraction were conducted using Covidence and an a priori extraction tool.
Results: From 23,070 records, 141 studies describing 157 instruments met inclusion criteria. Most instruments focused on negative aspects of caregiving (e.g., burden, distress, isolation), while fewer addressed positive dimensions (e.g., resilience, satisfaction, reciprocity). Psychometric rigor varied widely. Validation samples were often small and predominantly composed of spousal or adult child caregivers, limiting generalizability to more diverse caregiving populations.
Conclusion: The interpretability and utility of scores from existing caregiving instruments depend on the relevance of their constructs and the representativeness of their validation samples. While newer instruments have expanded the conceptualization of caregiving burden, many lack validation in diverse populations. This review underscores the need for measures that reflect the multifaceted experiences of caregivers from varied family structures and racial/ethnic 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.
- Detailed information on validation samples, including demographic and methodological characteristics, to support critical appraisal of generalizability and equity considerations.