Web-Based STAR E-Learning Course Increases Empathy and Understanding in Dementia Caregivers: Results from a Randomized Controlled Trial in the Netherlands and the United Kingdom

Abstract

BackgroundThe doubling of the number of people with dementia in the coming decades coupled with the rapid decline in the working population in our graying society is expected to result in a large decrease in the number of professionals available to provide care to people with dementia. As a result, care will be supplied increasingly by untrained informal caregivers and volunteers. To promote effective care and avoid overburdening of untrained and trained caregivers, they must become properly skilled. To this end, the European Skills Training and Reskilling (STAR) project, which comprised experts from the domains of education, technology, and dementia care from 6 countries (the Netherlands, Sweden, Italy, Malta, Romania, and the United Kingdom), worked together to create and evaluate a multilingual e-learning tool. The STAR training portal provides dementia care training both for informal and formal caregivers.ObjectiveThe objective of the current study was to evaluate the user friendliness, usefulness, and impact of STAR with informal caregivers, volunteers, and professional caregivers.MethodsFor 2 to 4 months, the experimental group had access to the STAR training portal, a Web-based portal consisting of 8 modules, 2 of which had a basic level and 6 additional modules at intermediate and advanced levels. The experimental group also had access to online peer and expert communities for support and information exchange. The control group received free access to STAR after the research had ended. The STAR training portal was evaluated in a randomized controlled trial among informal caregivers and volunteers in addition to professional caregivers (N=142) in the Netherlands and the United Kingdom. Assessments were performed with self-assessed, online, standardized questionnaires at baseline and after 2 to 4 months. Primary outcome measures were user friendliness, usefulness, and impact of STAR on knowledge, attitudes, and approaches of caregivers regarding dementia. Secondary outcome measures were empathy, quality of life, burden, and caregivers’ sense of competence.ResultsSTAR was rated positively by all user groups on both usefulness and user friendliness. Significant effects were found on a person-centered care approach and on the total score on positive attitudes to dementia; both the experimental and the control group increased in score. Regarding empathy, significant improvements were found in the STAR training group on distress, empathic concern, and taking the perspective of the person with dementia. In the experimental group, however, there was a significant reduction in self-reported sense of competence.ConclusionsThe STAR training portal is a useful and user-friendly e-learning method, which has demonstrated its ability to provide significant positive effects on caregiver attitudes and empathy.

Effectiveness of Web-Based Psychosocial Interventions for Family Caregivers of Older People: What Do We Know?

“…The transferability issue of how to adapt a successful web-based program from one country to another (but also in different social, economic and cultural contexts within a same nation) is still not discussed, with few examples of international comparative research [18,30].…”

“…Psychoeducational programs seem to be effective in improving dementia caregivers' psychological wellbeing [8,[14][15][16][17]. Most effective programs are usually structured (with a fixed number of lessons or sessions) and short-term, from 1 to 4 months [14,17,18]. One study on the Tele-Savvy program [16] delivered daily video modules to caregivers and organized weekly videoconferences, with good preliminary results in reducing subjective burden, depression, anxiety, frequency and upset of behavioral and psychological symptoms of dementia (BPSD), as well as increasing caregiver's competence.…”

“…Few studies on psychoeducational programs for caregivers of older people with dementia have come instead with mixed or inconclusive results [18][19][20][21][22]. In two cases, STAR in the EU and AlzOnline in the US, the outcome improvements were quite weak, concerning only better empathy feeling between caregivers and intervention staff [18] and selfefficacy [19].…”

“…In two cases, STAR in the EU and AlzOnline in the US, the outcome improvements were quite weak, concerning only better empathy feeling between caregivers and intervention staff [18] and selfefficacy [19]. One study, focused on the Caring Web program for family caregivers of stroke survivors [23], conducted a RCT involving 103 users but without demonstrating improvements in psychological outcomes, showing instead significant reductions in emergency department visits and hospital readmissions.…”

“…Furthermore, there is little, but interesting, evidence of potential side effects of short-term educational interventions, which can lead some users to report higher levels of perceived stress [21] and decreased sense of competence [18]. These results suggest that an increased role awareness by users, stimulated by web programs, could lead to an immediate, negative self-appraisal of personal situation, but with the potential benefit of recognizing own needs of support and develop and using adaptive coping strategies.…”