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）的个人及其家人在灾难中尤其脆弱。灾害：由于与灾害有关的压力以及获得资源和支持的机会减少，它限制了护理人员继续护理的能力。2019冠状病毒病大流行表明，ADRD患者及其护理人员极度脆弱，因为他们由于与COVID-19感染相关的恐惧而难以获得支持和资源；这种影响在农村地区更为严重，因为那里的护理人员地理位置偏远，灾害管理资源匮乏。随着过去50年来联邦宣布的灾害数量急剧增加，需要积极的公共卫生努力，以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害的紧急护理计划。该项目的长期目标是加强应急准备和支持ADRD患者护理人员网络，通过实施一项名为Disaster PrepWise （DPW）的干预计划，提高他们的复原力，最大限度地减少痛苦。在DPW项目中，一名训练有素的医疗储备团（MRC）志愿者将为护理人员提供逐步指导，共同制定应急准备计划和个人支持网络。本研究的目的是：1)检验家庭护理对照顾者结果（即心理弹性、压力）的影响，以及可能介导家庭护理与结果（照顾者自我效能感、准备程度、社会支持）之间关系的认知；2)在现实环境中评估实施策略，以优化未来的传播。我们将对200名ADRD患者的护理人员进行随机对照试验，包括两组：DPW干预组和仅提供信息的对照组（打印备灾信息）。评估将在随机化前（基线）以及基线后3个月和6个月进行。这项研究的创新之处在于，它采用了高度个性化的备灾方案，并内置了对护理人员的支持；支助将通过现有的国家级公共卫生基础设施提供，该基础设施极有可能惠及农村地区的老年人和照料者。通过本研究获得的知识和数据将为未来更大规模的多州实用试验奠定基础，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.