JMIR Publications

ABSTRACT

Background:

Patients with Alzheimer’s disease (AD) commonly rely on family caregivers for daily function. Research shows caregiver-person with memory loss (PWML) relationships have important effects on health and well-being for both caregivers and PWML. However, most studies rely on a single caregiver-PWML dyad as the unit of analysis, thereby neglecting the broader network of caregivers who collectively shape care experiences and outcomes.

Objective:

This protocol paper describes the conceptual and methodological framework for a study of caregiver networks. Study aims are to measure and map the social networks of caregivers of PWML while examining population heterogeneity in caregiver relationships and identify network-based predictors of well-being for both caregivers and PWML.

Methods:

Our team will conduct a large multi-location (IL, IN, HI) study of 200 PWML caregiver networks supported by data from PWML and their caregivers. Networks will be collected using our team’s cutting edge Network Canvas software tools and analyzed using both quantitative and mixed methods.

Results:

This study was awarded in August 2023 and is currently in its second year of data collection.

Conclusions:

This project advances PWML caregiver research by operationalizing a scalable and replicable approach to measuring caregiver networks. The ability to easily measure and identify structural features of caregiver systems helps identify predictors of caregiver experiences and outcomes, and provides large benefits for the caregiver-PWML research community.