WeCareAdvisor, an Online Platform to Help Family Caregivers Manage Dementia-Related Behavioral Symptoms: an Efficacy Trial in the Time of COVID-19

Abstract

Dementia-related behavioral and psychology symptoms (BPSD) are undertreated and have negative consequences. However, families do not have access to disease information, tailored problem-solving and effective management strategies, and with COVID-19, are more socially isolated and distressed. To address this dementia care gap, we describe a Phase III efficacy trial testing an online platform, WeCareAdvisor, and design modifications necessitated by COVID-19. WeCareAdvisor provides caregivers with disease information, daily tips, and a systematic approach for describing behaviors, investigating underlying causes, creating tailored strategies, and evaluating their effectiveness (DICE). The trial will enroll 326 caregivers nationwide, randomly assign them to immediately receive WeCareAdvisor (treatment), or a 3-month waitlist (control) and evaluate short (1- and 3-month) and long-term (6-month) outcomes for caregiver distress with and confidence managing BPSD, and BPSD occurrences. We will also evaluate utilization patterns with different prompting conditions: high-intensity (telephone and email reminders), low-intensity (email reminders), or no reminders to use WeCareAdvisor. COVID-19 necessitated design modifications resulting in greater inclusivity of caregivers from diverse races, ethnicities, and geographic areas. Key modifications include shifting from in-home, in-person interviewing to telephone; adjusting tool functionality from operating on a grant-funded iPad to caregivers’ personal internet-capable devices; and expanding recruitment from one metropolitan area to nationwide. Study modifications necessitated by COVID-19 facilitate national outreach, easier tool adoption, and enable more diverse caregivers to participate. This study addresses a critical dementia care need, and design modifications may shorten timeline from efficacy testing to commercialization.

The need for disinhibition-focused interventions in dementia

“…While several technology-based non-pharmacological interventions geared toward helping caregivers manage neuropsychiatric symptoms in dementia exist (e.g. Gitlin et al, 2021), these programs have not been implemented on a larger scale, and they do not appear to specifically target behavioral disinhibition. As access to technology increases for people living with dementia and their family caregivers, the potential role of supportive technology-based intervention strategies deserves more attention.…”

Information needs and mHealth applications for carers of people with dementia in managing behavioural and psychological symptoms of care recipients: an integrative review protocol

“… 6 However, there is no approved disease-modifying medication for dementia, 7 8 and literature supports that BPSD is mostly undertreated. 9 Moreover, a lack of evidence has been shown concerning medication effectiveness in managing BPSD. 6 Consequently, BPSD negatively affects people with dementia psychologically, socially, and financially.…”

“…The management strategies, including the management of BPSD, include both pharmacological and non-pharmacological treatments 6. However, there is no approved disease-modifying medication for dementia,7 8 and literature supports that BPSD is mostly undertreated 9. Moreover, a lack of evidence has been shown concerning medication effectiveness in managing BPSD 6.…”

“…Therefore, it is essential to focus on carers’ needs concerning managing BPSD of their care recipients with dementia 2 10. However, the literature indicates that informal carers of people with dementia have limited access to information and support services 9 15. As a result, carers face challenges in identifying, responding to, and managing BPSD, and can feel frustrated, especially at the beginning of BPSD 15 16…”

The Development of an Evidence-Based Telephone-Coached Bibliotherapy Protocol for Improving Dementia Caregiving Appraisal

“…Self-help interventions have been conducted among dementia caregivers in several international settings, including the United States [ 7 ] and the Netherlands [ 8 ]. A published review reported that self-help interventions adopting cognitive behavioral therapy techniques could modify the caregivers’ thoughts and behaviors by facilitating self-help [ 9 ].…”