JMIR Publications

ABSTRACT

Background:

People living with Alzheimer’s 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:

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. We used a mixed-methods approach that included both quantitative CareVirtue usage data and semi-structured interviews.

Results:

Care networks ranged from one to eight members. Primary caregivers were predominantly female (74.5%), white (86.2%), married (72.5%), college-educated (70.5%) and were, on average, 60 years of age, with 18% living in a rural area. CareVirtue usage varied along two 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% of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average (standard deviation) was 81.8 (12.8) for the System Usability Scale score indicating ‘good’ usability and 3.4 (1.0) for perceived usefulness suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week two to 8.9 in week 7 (Pearson correlation coefficient = 0.91, 95% CI = [0.84, 0.95]). The following sociodemographic characteristics were associated with posting in the journal: retired (M=59.5 posts for retired caregivers; M=16.9 for non-retired caregivers), income (M=13 posts for those reporting >100K; M=55.4 for those reporting <100K), relationship to care recipient (M=18.7 posts for child and M=56.4 for partners/spouses), and living situation (M=44.7 for those who live with the care recipient and M=13.1 for those who do not). Older care recipients were associated with fewer posts (Pearson correlation coefficient = -0.33, 95% CI = [-0.55, -0.06]).

Conclusions:

Our 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. Our 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.