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

阿尔茨海默病或相关痴呆症(ADRD)患者及其家人在灾难期间特别容易受到伤害。灾害：由于与灾害有关的压力以及获得资源和支助的机会减少，它限制了照顾者继续进行护理的能力。新冠肺炎大流行表明，由于与新冠肺炎感染有关的恐惧，ADRD患者及其照顾者难以获得支持和资源；这种影响在农村地区加剧，那里的照顾者地理位置偏远，灾害管理资源稀缺。随着联邦政府宣布的灾害数量在过去50年里急剧增加，需要积极的公共卫生努力，支持照顾者制定可用于大流行病和极端天气紧急情况等灾害的紧急照护计划。该项目的长期目标是加强ADRD患者照顾者的应急准备和支持网络，通过实施干预计划Disaster PrepWise(DPW)提高他们的复原力并将痛苦降至最低。在DPW计划中，一名训练有素的医疗储备公司(MRC)志愿者将为照顾者提供循序渐进的指导，以共同制定应急准备计划和个人支持网络。这项拟议研究的目标是：1)测试DPW对照顾者结果(即，复原力、压力)的影响，以及可能中介DPW与结果(照顾者自我效能、准备、社会支持)之间关系的感知；2)评估现实环境中的实施策略，以优化未来的传播。我们将对200名ADRD患者的照顾者进行随机对照试验，涉及两个方面：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(基线)之前以及基线之后3个月和6个月进行。这项研究在使用高度个性化的备灾计划和内置援助来支持照顾者方面具有创新性；支持将通过现有的国家级公共卫生基础设施(MRC)提供，该基础设施具有极大的潜力覆盖农村地区的老年人和照顾者。通过本研究获得的知识和数据将为未来更大规模的多状态语用试验评估传播潜力奠定基础。

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.