The development and refinement of the enhancing active caregiver training (EnACT) intervention for caregivers of persons living with dementia

Abstract

AbstractBackgroundBehavioral symptoms affect up to 90% of persons living with dementia.1 While interventions have been developed to help caregivers manage symptoms,, these interventions show only weak to moderate effect size.2 The most successful psychoeducational interventions use active‐engagement techniques to facilitate the application of knowledge and skills.2‐5 Yet the optimization and systematic testing of active‐engagement techniques is lacking.2‐6 By optimizing active‐engagement techniques, we may strengthen caregiver preparation. Enhancing Active Caregiver Training (EnACT) is an arts‐based intervention aimed at engaging dementia caregivers by using techniques that allow them to better manage common behavioral symptoms associated with dementia. The purpose of this presentation is to describe the process of developing and refining EnACT in preparation for feasibility testing with dementia family caregivers.MethodAs part of a larger sequential qualitative‐to‐quantitative mixed‐method design to develop and test EnACT, we implemented an iterative three‐stage review process to prepare intervention materials for focus group feedback and future pilot testing. This included review from: 1) a caregiving expert/clinician, 2) two applied humanities researchers with expertise in arts‐based healthcare training, and 3) a three‐person research team completing a mock focus group.ResultIntervention materials were revised following each stage of review. In stage 1, we identified caregiving scenarios for inclusion, clarified confusing process components, and emphasized questions to ask as part of discussion and reflection activities. During Stage 2, we reorganized activities to follow a narrative structure and allow participants to explore one caregiving scenario at a time. In addition, we added application questions that ask participants to explore how scenarios relate to their own experiences. In stage 3, we expanded focus group activities to the online platform to promote access and safety. Through testing the process in advance, we refined procedural steps to facilitate caregiver engagement and identified potential barriers to participation.ConclusionWhen preparing to conduct a feasibility and acceptability trial for a behavioral intervention, seeking feedback enhances protocols to improve intervention processes. Iterative review may reduce extraneous problems, enabling focus groups to target participant feedback specific to dementia caregivers and their needs.