Emergency preparedness and support of caregivers of persons with dementia: The Disaster PrepWise study

患有阿尔茨海默病或相关痴呆症（ADRD）的人及其家人在灾难中特别脆弱。灾害限制了护理人员继续护理的能力，因为与灾害有关的压力和获得资源和支持的机会减少。2019冠状病毒病大流行显示，ADRD患者及其照顾者极度脆弱，因为他们因与2019冠状病毒病感染相关的恐惧而难以获得支持和资源;在照顾者地理位置偏远且灾害管理资源稀缺的农村地区，这种影响更为严重。在过去的50年里，联邦政府宣布的灾难数量急剧增加，需要积极的公共卫生工作来支持护理人员制定可用于流行病和极端天气紧急情况等灾难的应急计划。该项目的长期目标是通过实施干预计划Disaster PrepWise（DPW），加强ADRD患者的应急准备和护理人员支持网络，以提高他们的复原力并最大限度地减少痛苦。在DPW计划中，一名训练有素的医疗储备公司（MRC）志愿者将为护理人员提供逐步指导，以共同制定应急准备计划和个人支持网络。这项拟议研究的目的是：1）测试DPW对护理人员结果的影响（即，弹性，压力）和观念，可能调解DPW和结果（照顾者自我效能，准备，社会支持）之间的关联;和2）评估在现实世界的设置，以优化未来的传播实施战略。我们将对200名ADRD患者的照顾者进行随机对照试验，包括两组：DPW干预组和仅信息对照组（关于灾难准备的打印信息）。将在随机化（基线）前以及基线后3个月和6个月进行评估。这项研究在使用高度个性化的备灾计划方面具有创新性，该计划具有内置援助来支持护理人员;支持将通过现有的国家级公共卫生基础设施（MRC）提供，该基础设施具有很大的潜力，可以覆盖老年人和护理人员农村地区。通过本研究获得的知识和数据将为未来更大规模的跨州语用试验奠定基础，以评估传播潜力。

Individuals with Alzheimer’s disease or related dementias (ADRD) and their families are especially vulnerable during a disaster. Disasters it limit caregivers’ ability to continue with care due to disaster related stress and reduced access to resources and support. The COVID-19 pandemic showed the extreme vulnerability of persons with ADRD and their caregivers as they struggled to access support and resources due to fear associated with COVID-19 infection; such impact was exacerbated in rural areas where caregivers are geographically isolated and disaster management resources are scarce. With the number of federally declared disasters increased dramatically over the past 50 years, active public health efforts are needed to support caregivers develop emergency caregiving plans usable in disasters such pandemics and extreme weather emergencies. The long-term goal of this project is to enhance emergency preparedness and support networks of caregivers of individuals with ADRD to increase their resilience and minimize distress by implementing an intervention program, Disaster PrepWise (DPW). In the DPW program, a trained Medical Reserve Corp (MRC) volunteer will provide step-by-step guidance to caregivers to jointly develop emergency preparedness plans and personal support networks. The objectives for this proposed study are to 1) test the impact of DPW on caregiver outcomes (i.e., resilience, stress) and perceptions that may mediate the association between DPW and outcomes (caregiver self-efficacy, preparedness, social support); and 2) evaluate implementation strategies in a real-world setting to optimize future dissemination. We will conduct a randomized control trial of 200 caregivers of persons with ADRD involving two arms: DPW intervention group and information-only control group (print information on disaster preparedness). Assessments will occur before randomization (baseline), and 3- and 6-month after the baseline. This study is innovative in its use of highly personalized disaster preparedness program with built-in assistance to support caregivers; the support will be provided through an existing national-level public health infrastructure (MRC) that has a great potential to reach older adults and caregivers in rural areas. The knowledge and data obtained through this study will lay the foundation for a future larger-scale multi-state pragmatic trial to assess dissemination potentials.