JMIR Publications

ABSTRACT

Background:

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 who 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.

Objective:

We aimed to investigate the perception and utilization of online peer support through a survey.

Methods:

Following the Andersen and Newman Framework of Health Services Utilization, we designed and administered a survey using Redcap to investigate the perception and utilization of online peer support among informal dementia caregivers. Specifically, we collected three types of information that will influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refers to the socio-culture characteristics of caregivers, relationship between caregivers and PLWD, and beliefs in the value of online peer support; enabling factors, which refers to the logistic aspects of accessing online peer support (e.g., eHealth Literacy, access to high-speed internet); need factors, which the most immediate cause of seeking online per support. We also collected caregivers’ experience in accessing online communities. We distributed the survey link on November 14, 2022, on two online locations: Alzheimer’s Association website as an advertisement, and ALZConnected, an online community organized by Alzheimer’s Association. We collected all the responses on February 23, 2023, and conducted regression analysis to learn the factors that are associated with the access of online peer support.

Results:

We collected responses from 172 dementia caregivers. Among these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19-87 with a mean of 54, and a majority were female (88%) or White (90%). 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%).

Conclusions:

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.