Learning From Peers: A Survey of Perception and Utilization of Online Peer Support Among Informal Dementia Caregivers

Abstract: Informal dementia caregivers are those who care for a person living with dementia (PLWD) without receiving payment (e.g., family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but they are limited in focusing merely on caregivers who are already online users. In this paper, we designed and administered a survey to investigate the perception and utilization of online peer support from 140 informal dementia caregivers (with 100 online-community caregivers). Our findings show that the behavior to access any online community is only significantly associated with their belief in the value of online peer support (p = 0.006). Moreover, 33 (83%) of the 40 non-online-community caregivers had a belief score above 24, a score assigned when a neutral option is selected for each belief question. The reasons most articulated for not accessing any online community were no time to do so (14; 10%), and insufficient online information searching skills (9; 6%). Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or searching skills.