Emergency Preparedness for Caregivers of Persons With Dementia: Disaster PrepWise

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

250 participants

Study Classification

INTERVENTIONAL

Study Start Date

2023-07-12

Study Completion Date

2027-06-30

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

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.

Related Clinical Trials

Explore similar clinical trials based on study characteristics and research focus.

Caregivers Preparing for Their Own Health Care Emergency

NCT06635876

Dementia Caregiver Burden

RECRUITING NA

Stress Reduction Study for Partners of Early Stage Dementia

NCT03691428

Dementia Caregiving

COMPLETED NA

Self-Management Intervention: Considering Needs & Preferences of Dementia Caregivers (Caregiver Career Study)

NCT04603482

Stress Carer Stress Syndrome Dementia +2 more

COMPLETED NA

Reducing Behavioral and Psychological Symptoms of Dementia: Family Caregivers (Aim 1)

NCT04481568

Alzheimer's Disease and Related Dementias

COMPLETED NA

Vietnamese Caregiver Intervention Study

NCT03218982

Alzheimer's Disease (Incl Subtypes) Cognitive Impairment

COMPLETED NA

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Caregiver Resilience and Stress

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

DOUBLE

Investigators Outcome Assessors

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

Control

Caregivers who consent to participate, complete a baseline survey, and are assigned to the control arm will receive a four-page handout on Emergency Preparedness published by the Alzheimer's Association that provides tips on preparing for disasters and what to do during and after a disaster. Control participants will complete follow-up surveys at 3 and 6 months, similar to intervention participants.

Group Type NO_INTERVENTION

No interventions assigned to this group

Disaster PrepWise-Caregiver Intervention

Caregivers who consent to participate, complete a baseline survey, and are assigned to the intervention arm will receive a Disaster PrepWise-Caregiver program from a trained interventionist and receive a completed household emergency management plan. Control participants will complete follow-up surveys at 3 and 6 months, similar to intervention participants.

Group Type EXPERIMENTAL

Disaster PrepWise-Caregiver

Intervention Type 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.

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

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.

Intervention Type BEHAVIORAL

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

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).

Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No