Emergency Preparedness for Caregivers of Persons With Dementia: Disaster PrepWise

Summary

Individuals with dementia and their families are especially vulnerable during a disaster as it limits 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 dementia (PWD) and their caregivers as they struggled to access support and resources due to the threat of 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 increasing dramatically over the past 50 years, active public health efforts are needed to support caregivers in developing emergency caregiving plans usable in disasters such as pandemics and extreme weather emergencies. The long-term goal of this project is to enhance emergency preparedness and support networks of caregivers of PWD 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 of 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 250 caregivers of persons with dementia involving two arms: DPW intervention group and an information-only control group (print information on disaster preparedness). Assessments will occur before randomization (baseline), and 3 and 6 months after the baseline. This study is innovative in its use of a 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.

Conditions

• Caregiver Resilience and Stress

Interventions

BEHAVIORAL

Disaster PrepWise-Caregiver

The Disaster PrepWise (DPW) intervention consists of five interactive modules and two supplemental sections (special topics and resources on various types of disasters). The five modules are: (1) Complete a Personal \& Household Assessment, (2) Develop a Personal Emergency Network, (3) Develop Emergency Information \& Gather Important Documents, (4) Keep a 3-5 Day Supply of Medications \& Medical Supplies, and (5) Build an Emergency Supply Kit. Through an initial visit (IV1) and a follow-up phone conversation 4 weeks later (IV2), the interventionist will develop a personalized disaster management plan and provide it to the participant for sharing with family and friends. Eight weeks after the initial session, the interventionist will make a final follow-up call (IV3) to provide any additional assistance caregivers may need.

Sponsors & Collaborators

• National Institute on Aging (NIA)

  collaborator NIH

• Sato Ashida

  lead OTHER

Principal Investigators

• Sato Ashida, PhD · University of Iowa

Study Design

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

DOUBLE

Model

PARALLEL

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2023-07-12

Primary Completion

2026-05-30

Completion

2027-06-30

Countries

• United States

Study Locations