A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study

Abstract

Background People living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources. Objective This study aims to evaluate CareVirtue’s feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use? Methods We conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews. Results Care networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75%), White (44/51, 86%), married (37/51, 73%), college educated (36/51, 71%), and were, on average, 60.3 (SD 9.8) years of age, with 18% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating “good” usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US $100K and mean 55.4 for those reporting <US $100K), relationship to care recipient (mean 18.7 posts for child and mean 56.4 for partners/spouses), and living situation (mean 44.7 for those who live with the care recipient and mean 13.1 for those who do not). Older care recipients were associated with fewer posts (r=–0.33, 95% CI –0.55 to –0.06). Conclusions This study establishes the acceptability and feasibility of CareVirtue among ADRD care networks and highlights the importance of designing flexible, multicomponent interventions that allow care networks to tailor their engagement according to their needs. The results will be used to improve CareVirtue feasibility and acceptability in preparation for a subsequent randomized trial to test CareVirtue’s effectiveness in improving caregiver outcomes.

Qualifying the Quantified: Structural Topic Modeling Analysis of Engagement in Digital Health Platform for Dementia Caregivers

“…Our findings align with previous studies based on CareVirtue on how topics such as tracking trends over time, awareness of caregiving experiences, and caregiving appraisal influences its usefulness and user engagement (Boutilier et al, 2022; Linden et al, 2022). For example, it can be seen from Figure 3 that people with less engagement shared their appraisals regarding caregiving with the word “worry” being the most prevalent (Table 1).…”

“…Participants were recruited between February and June 2021 via community sites in Wisconsin and California. The study reported here is a secondary analysis of a larger study to demonstrate the feasibility of CareVirtue and develop an artificially intelligent caregiver assistant for caregivers of people with dementia (Boutilier et al, 2022). CareVirtue was developed as a platform for caregivers to store and share information with members of their care team.…”