Understanding how informal dementia caregiver networks are assessed in the literature: results from a scoping review.

OBJECTIVES

Alzheimer's disease and related dementias currently affect millions of Americans, with increasing prevalence expected as the population ages. Care for individuals with dementia is typically provided by informal caregiver networks encompassing family, friends, and nontraditional care partners. Despite societal changes in caregiving roles and family structure, there is limited consensus on how caregiver networks are conceptualized and measured in research literature. The purpose of this analysis was to systematically map existing measurement approaches used to capture and characterize informal dementia caregiver networks, and to identify common data elements and validated instruments within the literature.

METHODS

We conducted a rigorous literature review guided by the JBI Manual for Evidence Synthesis for conducting scoping reviews, the Preferred Reporting Items for Systematic reviews and Metal-Analyses extension for Scoping Reviews (PRISMA-ScR). The protocol was registered on OSF (DOI: 10.17605/OSF. IO/2XGSR). Inclusion criteria comprised peer-reviewed, quantitative, English-language articles that defined or measured caregiver networks, with no geographic or date restrictions. Independent raters performed title, abstract, and full-text screening, supplemented by artificial intelligence (AI)-supported data extraction and latent content analysis to identify measurement approaches and data elements.

RESULTS

Out of 14,625 initial references, 197 studies were included that assessed caregiver networks for individuals with dementia. Only 19 studies utilized validated instruments, while the remaining 177 (89%) relied on study-specific measures. Thirteen validated tools were identified, although most were used only once or twice. Latent content analysis revealed seven recurring data elements in network characterization: (1) availability of another caregiver (45.2%), (2) amount of help provided (39.1%), (3) number of caregivers (23.4%), (4) type of activities assisted with (16.2%), (5) relationships of helpers (13.7%), (6) satisfaction with support (12.7%), and (7) demographic details of caregivers (2.5%). Most studies assessed just one or two network attributes, with marked variability and limited adoption of standardized measures.

CONCLUSION

There is substantial heterogeneity and inconsistency in how informal caregiver networks are assessed in dementia research, and there is no consensus approach in the literature. As caregiving networks diversify in response to changing demographics and family structures, robust, inclusive assessment instruments are critically needed. Future research should prioritize developing and validating standardized measures to better capture the complexities of modern informal dementia caregiver networks, thereby enhancing policy, support, and interventions for these populations.

SYSTEMATIC REVIEW REGISTRATION: OSF Registration found at https://osf.io/2xgsr/overview.