Caregiver Response to an Online Dementia and Caregiver Wellness Education Platform

Abstract

Background: Web-based educational interventions are emerging as a potential solution to improving caregiver dementia knowledge and overall well-being. Objective: To assess the feasibility of delivering a web-based intervention for dementia caregivers by examining: 1) engagement with the online platform, 2) skill implementation, and 3) changes on outcome metrics over the 30-day study period. Methods: Enrolled participants were onboarded by a trained research coordinator and provided 24/7 access to the platform over 30 days. At study onset and completion, caregivers completed assessments of care recipient dementia severity and neuropsychiatric symptoms along with instruments which measured dementia knowledge, caregiver burden, and carer experience. Results: Of 84 referrals, 60 caregivers met study inclusion criteria and 55 completed pre and post study measures. Caregivers completed an average of 8 hours of learning over the 30-day web-based intervention, with 84.4%of participants reporting using at least one skill they learned from the online platform. Eighty-nine percent of participants reported high satisfaction with the web-based educational intervention. There were small effect sizes for decreases in NPIQ neuropsychiatric symptom severity and caregiver distress scores from pre- to post-intervention. Small effect sizes were observed for changes in caregiver burden from pre- to post-intervention among caregivers who perceived their care recipient as having high global deterioration. Conclusion: Findings show online educational programs are feasible for informal family caregivers of dementia and has perceived value. Future studies should address caregiver response to online education in less severe versus more severe care recipients, and explore the value of caregiver online platforms in diverse caregiver samples.

Remote interventions for informal caregivers of patients with stroke: a systematic review and meta-analysis

“…Further, the results based on two included studies showed that remote interventions had no potential benefits on depressive and anxiety symptoms in care recipients. The conclusion of this review is consistent with that of previous studies on the impact of remote interventions on other diseases 37 38…”

“…Furthermore, in our included studies, the severity of patients who had a stroke was inconsistent, and if the degree of illness of patients was different, the burden of caregivers may also be different. The study by Rodriguez et al indicated that the effect of remote interventions on caregivers of patients with different disease severity levels should be evaluated because it may be tied to different levels of caregiver burden 37. Meanwhile, in the eight included studies in our review, the specific content of remote interventions was mainly based on the experience of different intervention makers and previous literature, ignoring the preferences and needs of patients who had a stroke and their informal caregivers.…”

“…The conclusion of this review is consistent with that of previous studies on the impact of remote interventions on other diseases. 37 38 …”

Challenges of conducting of online educational programs for family caregivers of people with dementia living at home: An integrative review

“…Eighty-five papers covering 49 studies were included (some studies were demonstrated in a series of papers). The included studies consisted of 19 RCTs [ [28] , [29] , [30] , [31] , [32] , [33] , [34] , [35] , [36] , [37] , [38] , [39] , [40] , [41] , [42] , [43] , [44] , [45] , [46] ], 10 non-RCTs [ [47] , [48] , [49] , [50] , [51] , [52] , [53] , [54] , [55] , [56] ], 4 descriptive quantitative studies [ [57] , [58] , [59] , [60] ], 4 qualitative studies [ [61] , [62] , [63] , [64] ] and 12 mixed-methods studies [ [65] , [66] , [67] , [68] , [69] , [70] , [71] , [72] , [73] , [74] , [75] , [76] ], see Appendix A . These studies were conducted in America ( n = 25), Netherlands ( n = 4), Canada ( n = 2), France ( n = 1), India ( n = 1), China ( n = 1), Australia ( n = 3), United Kingdom ( n = 2), Spain ( n = 1), Greece ( n = 1), Ireland ( n = 1), Korea ( n = 1), Iran ( n = 1) and multiple European countries ( n = 5).…”

“…Family caregivers desired more detailed information, such as stage-specific dementia information, attention to more difficult behaviors and complex issues, end-of-life planning and local resource [ 46 , 49 , 67 , 69 , 73 , 74 ]. Five studies perceived that more culturally, ethnically, or gender-related components may influence the delivery of online educational programs [ 28 , 34 , 39 , 54 , 76 ]. Even so, the results showed that 4 studies explored the impact of online educational programs on family caregivers’ knowledge relating to dementia [ 35 , 47 , 50 , 67 ], with 3 of them finding positive improvements.…”