Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study

Abstract

Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, 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 this research is limited, focusing merely on caregivers who are already online community users.

Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey.

Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support.

Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%).

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 online information-searching skills.

Keywords: caregiving challenges; informal dementia caregiver; online health community; online peer support; social support; survey.

Figure 1.. The predisposing, enabling, and need factors in the ANFHSU. ANFHSU: Andersen and Newman Framework of Health Services Utilization.

Figure 2.. Distribution of scores for the four measures. The red vertical lines in the “Caregiving stress,” “eHealth literacy,” and “Belief” in online peer support graphs correspond to the scores when “neutral” or “undecided” was selected for all the questions in each measure. The red vertical line in the “Caregiving competence” graph corresponds to the score when the “fairly” option was selected for all the questions.

Figure 3.. Heat maps of the number of survey participants in each belief category and scale pair (left) and the correlations in the responses (right). Resources: obtain the needed resources; Understanding: understanding patients or the disease; Skill: improve caregiving skills; Confidence: increase caregiving confidence or competence; Stress: reduce caregiving stress; Loneliness: reduce the feeling of loneliness as a caregiver.