# CareNet, An Interactive Digital Tool to Assess Informal Caregiving Networks of Older Adults with Dementia

> **NIH NIH R56** · EMORY UNIVERSITY · 2023 · $724,565

## Abstract

ABSTRACT
A growing body of literature demonstrates that informal caregiving is a social process and commonly involves
more than a single caregiver especially for older adults with dementia. Historically, caregiving research has
been focused on the psychosocial and physical health and wellbeing of the individual primary caregiver and
has generally overlooked the social contexts in which caregiving occurs, such as the role of interactions among
multiple caregivers. Our recent study to evaluate the scope and potential impact of informal caregiving
networks for persons with dementia (PWD) using an egocentric social network approach, i.e., one based on
the informant's perspective, has revealed that there are complex group dynamics and allocation of care
activities, including financial obligation, among multiple members of the network. We also learned that the
outcomes of caregivers (e.g., financial hardship) and PWD (e.g., hospital admissions) may be offset by
network characteristics and dynamics. The social network approach is well aligned with the phenomenon of
informal caregiving for PWD as it accounts for group dynamics of a social network and helps explain how such
network characteristics affect members' behaviors and well-being. However, for widespread use of caregiving
network assessment in both research and practice settings, a reliable and easy-to-use assessment tool will be
necessary, but no such tools currently exist. In response to RFA AG-23-002, we propose to develop CareNet,
an interactive digital tool with an embedded interview/survey, that will be easily deployed by providers and
researchers to fully characterize a PWD's caregiving network. We will employ an iterative user-centered design
approach, involving key stakeholders (i.e., caregivers, healthcare and social service providers, and
researchers) to optimize design and content considerations. In Phase 1, we will conduct interviews with diverse
informal caregivers to assess their needs and views about the meaning of caregiving from multiple
perspectives, which will inform adaptation of our egocentric caregiving network survey to better reflect the
pluralistic culture of caregiving. In Phase 2, we will conduct a series of usability evaluation sessions with the
key stakeholder participants followed by pilot-testing in a controlled, observational setting. Finally, in Phase 3,
we will field-test CareNet to evaluate usability and acceptability in field settings in which providers and
researchers interact with a caregiver to collect caregiving network data. We will refine features and functionality
in anticipation of large-scale testing of utility and future applications in practice settings. Our final, fully
functional CareNet will promote systematic caregiving network assessment by providers in practice and wide
use of social network analysis for characterizing informal caregiving of PWD by future investigators to expand
the empirical knowledge of informal caregiving.

## Key facts

- **NIH application ID:** 10893774
- **Project number:** 1R56AG083167-01
- **Recipient organization:** EMORY UNIVERSITY
- **Principal Investigator:** ANNETTE J DE VITO DABBS
- **Activity code:** R56 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2023
- **Award amount:** $724,565
- **Award type:** 1
- **Project period:** 2023-09-01 → 2025-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10893774

## Citation

> US National Institutes of Health, RePORTER application 10893774, CareNet, An Interactive Digital Tool to Assess Informal Caregiving Networks of Older Adults with Dementia (1R56AG083167-01). Retrieved via AI Analytics 2026-05-27 from https://api.ai-analytics.org/grant/nih/10893774. Licensed CC0.

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