Behavioral Change Factors and Retention in Web-Based Interventions for Informal Caregivers of People Living With Dementia: Scoping Review

Abstract

Background Web-based interventions aimed at supporting informal caregivers of people living with dementia have the potential to improve caregivers’ well-being and psychological health. However, few interventions are widely implemented for this population, and none of the prior reviews have systematically examined the use of behavior change techniques (BCTs), theories, and agents in web-based interventions for informal caregivers of people living with dementia. To better understand this implementation gap, we reviewed the literature to map behavioral factors (BCTs, theories, and agents) deployed in the studies. Furthermore, because there is an emerging consensus that retention could be shaped by participant characteristics and behavioral factors, we explored relationships between these features and retention rates across studies. Objective We pursued 3 objectives: to map behavioral factors involved in the web-based interventions for informal caregivers of people living with dementia; to examine the relationship between behavioral change elements and retention in the studies; and to examine the relationship between participant characteristics (gender, age, and spouse or adult children caregiver proportion) and study retention. Methods We conducted a literature review using the following keywords and their corresponding Medical Subject Headings terms: dementia, caregivers, and web-based intervention. The time limits were January 1998 to March 2022. Using the BCTv1 taxonomy, which specifies active behavioral components in interventions, 2 coders collected, summarized, and analyzed the frequency distributions of BCTs. Similarly, they abstracted and analyzed participant characteristics, behavior change theories, behavior change agents, and retention rates in the studies. Results The average age was 61.5 (SD 7.4) years, and the average proportion of spousal informal caregivers, adult children informal caregivers, and retention rates were 51.2% (SD 24.8%), 44.8% (SD 22%), and 70.4% (SD 17%), respectively. Only 53% (17/32) of the studies used behavior change theories, but 81% (26/32) included behavior change agents. The most common BCTv1 clusters were shaping knowledge and social support. The median number of BCTv1 clusters was 5 (IQR 3). We observed a negative correlation between the proportion of spousal informal caregivers and the retention rate (r=−0.45; P=.02) and between the number of BCTv1 clusters and retention rates (r=−0.47; P=.01). We also found that the proportion of adult children informal caregivers in the study was significantly and positively correlated with the retention rate (r=0.5; P=.03). No other participant characteristics or behavioral factors were associated with retention rates. Conclusions We found that almost half of the studies were not informed by behavior change theories. In addition, spousal involvement and a higher number of BCTs were each associated with lower retention rates, while the involvement of adult children caregivers in the study was associated with higher retention. In planning future studies, researchers should consider matching participant characteristics with their intended intervention as the alignment might improve their retention rates.

Virtual Intervention for Caregivers of Persons With Lewy Body Dementia: Pilot Quasi-Experimental Single-Arm Study

“…Enrollment and retention were successful, with the study experiencing only a 20% dropout rate. Our study showed retention rates similar to or better than those reported in other recent studies of digital interventions for family caregivers of persons with dementia [ 14 ]. A pooled estimate from recent studies that mainly recruited spousal caregivers [ 9 - 13 ] reported an average 66% retention rate, compared to the 80% retention rate reported in this study.…”

“…A proliferation of interventions for informal caregivers of persons living with dementia has occurred in recent years, including digital interventions focusing on caregiver empowerment and the psychological health [9][10][11][12][13]. However, many of the digital interventions do not account for the unique characteristics of their target users, affecting their effectiveness and implementation potential [14], and still include in-person elements that might be suboptimal in pandemic circumstances. Many lack a fully remote, asynchronous approach that allows on-demand engagement in terms of location, time, and frequency and do not focus on LBD specifically.…”

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“…Yet, whether such an approach is synergetic or counterproductive regarding behavioral change is unclear. Our recent study showed that “less is more,” and more behavioral change elements packed into a digital intervention might lead to a lower engagement [ 65 ]. Finally, the app might further benefit from improvements, especially in the engagement domain, because only 50% (n=4) of participants partly or completely agree that the app is fun, interesting, and interactive.…”

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“…These interventions mainly include education, cognitive–behavioural therapy, music therapy, peer support, mindfulness and multicomponent intervention. 20 21 Despite the fact that existing intervention programmes are effective in reducing caregivers’ negative emotions and improving their own coping skills, 22 informal caregivers of patients with dementia who are heavily involved in caregiving or have work commitments may not be able to fully participate in certain behaviour programmes that require in-person delivery, or higher economic cost. 21 23 More research is needed to develop effective, simple and convenient psychological support programmes for dementia caregivers.…”