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NCT Number: NCT05619263

Emergency Preparedness for Caregivers of Persons With Dementia: Disaster PrepWise

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.

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This study is active but is not currently recruiting participants.

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Key information

Conditions

Caregiver Resilience and Stress Alzheimer Disease Brain Diseases Central Nervous System Diseases Dementia Mental Disorders Nervous System Diseases Neurocognitive Disorders Neurodegenerative Diseases Tauopathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

University of Iowa

Iowa City, Iowa, 52242, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • English speaking adults (18 years and older)
  • Family members (e.g., biological and non-biological relatives, friends) of individuals diagnosed with ADRD regardless of whether they live with the individual or not. Individuals will not be excluded based on race/ethnicity, gender, or sexual orientation.

Exclusion criteria

  • Families of those diagnosed as predementia or mild cognitive impairment are excluded from the parent study due to differing care needs.
  • DPW addresses the needs of community-dwelling individuals, thus, caregivers of those living in nursing homes facilities will be excluded.
  • Caregivers with physical or cognitive conditions that prevent them from consenting or providing responses to questions will be excluded following evaluation ("Evaluation to Sign an Informed Consent Document for Research," UI IRB).

Treatment and study plan

Disaster PrepWise-Caregiver

Behavioral

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.

Primary outcomes

  1. Resilience

    Time frame: Change between baseline and 6-month follow-up

    Connor-Davidson Resilience Scale (CD-RISC: 25 items). The range is 0 to 100. Higher scores indicate higher resilience.

  2. Caregiver stress

    Time frame: Change between baseline and 6-month follow-up

    Cohen Perceived Stress Scale (PSS: 14 items). The range is 0 to 40. Higher scores indicate higher perceived stress.

Secondary outcomes

  1. Self-Efficacy

    Time frame: Change between baseline and 6-month follow-up

    Caregiver Self-Efficacy (SE to manage care, 5 items; SE to use services, 4 items). The range is 0-10. A higher score indicates a higher amount of self-efficacy.

  2. Caregiver Preparedness

    Time frame: Change between baseline and 6-month follow-up

    Caregiver Preparedness scale (8 items). The range is 0 to 40. A higher score indicates that the caregiver feels more prepared for caregiving.

  3. Social Networks

    Time frame: Change between baseline and 6-month follow-up

    CaREnet: Caregiver Social Network Assessment tool. It is not a scale score. Counts of network members engaging in supportive interactions.

Sponsors and collaborators

Lead sponsor

Sato Ashida

Other

Collaborators

  • National Institute on Aging (NIA)

Registry information

Official study title

Emergency Preparedness and Support for Caregivers of Persons With Dementia: Disaster PrepWise

Acronym: DPW-Caregiver

Important dates

Study start
2023
Primary completion
2026
Study completion
2027
First posted
Nov 16, 2022
Registry last updated
Jul 21, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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