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

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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.