Lessons Learned From an Effectiveness Evaluation of Inlife, a Web-Based Social Support Intervention for Caregivers of People With Dementia: Randomized Controlled Trial

Abstract

Background Informal care for people with dementia not only affects the well-being of the primary caregiver but also changes their roles and interactions with the social environment. New online interventions might facilitate access to social support. Recently, an online social support platform, Inlife, was developed in the Netherlands and aims to enhance social support and positive interactions in informal support networks. Objective This study aimed to evaluate the effectiveness of Inlife for caregivers of people with dementia. Methods A randomized controlled trial with 96 caregivers of people with dementia was performed. Participants were randomly assigned to the Inlife intervention or the waiting list control group. After 16 weeks of Inlife use, the waiting list control group could start using Inlife. Effects were evaluated at baseline (T0), 8 weeks (T1), and 16 weeks (T2). The 16-week follow-up assessment (T2) served as the primary endpoint to evaluate the results for the primary and secondary outcome variables evaluated with online self-report questionnaires. The primary outcomes included feelings of caregiver competence and perceived social support. The secondary outcomes included received support, feelings of loneliness, psychological complaints (eg, anxiety, stress), and quality of life. Results No significant improvements were demonstrated for the intervention group (n=48) relative to the control group (n=48) for the primary outcomes (feeling of carer competence: b=–0.057, 95% CI –0.715 to 0.602, P=.87; perceived social support: b=–15.877, 95% CI –78.284 to 46.530, P=.62) or any secondary outcome. This contrasts with our qualitative findings showing the potential of Inlife to facilitate the care process in daily life. Adherence was not optimal for all Inlife users. Additional per-protocol and sensitivity analyses also revealed no beneficial results for high active Inlife users or specific subgroups. Inlife users were more active when part of a larger network. Conclusions Researchers should be modest regarding the effectiveness of online caregiver interventions in terms of quantitative measures of well-being and quality of life. Nevertheless, online tools have the potential to facilitate the caregiver process in daily life. Lessons learned include the importance of harnessing the power of human interaction in eHealth, making use of the user’s social capital, and the need to develop research methods that can identify benefits in daily life that are ecologically valid for caregivers. Trial Registration Netherlands Trial Register NTR6131; https://trialsearch.who.int/Trial2.aspx?TrialID=NTR6131 International Registered Report Identifier (IRRID) RR2-10.1186/s13063-017-2097-y