Among 1,113 unpaid informal caregivers of people living with Alzheimer's disease or related dementias (ADRD), 66.5% reported using online peer support in the prior three months—yet over half of those users (54.3%) engaged passively, reading rather than posting. Higher belief in online support value (OR 1.04), greater eHealth literacy (OR 1.06), willingness to use experience-search tools (OR 1.68), and elevated caregiving stress (OR 1.03) all independently predicted active use in fully adjusted logistic regression models.
Dementia caregiving is one of the most demanding informal care roles, associated with elevated rates of depression, burnout, and social isolation. That two-thirds of caregivers are already turning to online communities reflects a real and underserved demand for peer connection—yet the fragmented, "long-tail" platform landscape means support is scattered and inconsistent in quality. The dominant pattern of passive participation (lurking) aligns with broader research on health-related online communities, where silent consumption still confers psychological benefit through parasocial learning and reduced isolation, even without direct interaction.
Practically, the eHealth literacy finding suggests digital-skills interventions could meaningfully expand access for older or less tech-confident caregivers. However, critical limitations apply: this is a non-probability, opt-in web panel sample, introducing self-selection bias, and the cross-sectional design prevents causal inference. As a preprint not yet peer-reviewed, these findings should be interpreted cautiously. Still, the scale and framework-guided analysis make this a substantive, policy-relevant contribution to caregiver support infrastructure.
