Emergency Preparedness Training for Dementia Caregiving

(DPW-Caregiver Trial)

Overseen By Maria Donohoe, MPH

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Sato Ashida

Disqualifiers: Predementia, Mild cognitive impairment, Nursing homes, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 3

250 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to help caregivers of people with dementia prepare for emergencies like pandemics and extreme weather. Participants will either receive a personalized emergency preparedness program, Disaster PrepWise, with guidance from a trained volunteer, or printed information on disaster readiness. The trial will measure how these approaches impact caregiver resilience, stress, and preparedness. It is ideal for English-speaking family members or friends caring for someone with dementia who lives at home, not in a nursing facility.

As an unphased trial, this study offers a unique opportunity to contribute to valuable research that can enhance emergency preparedness for caregivers.

Will I have to stop taking my current medications?

The trial protocol does not specify whether participants must stop taking their current medications.

What prior data suggests that the Disaster PrepWise program is safe for caregivers?

Research shows that the Disaster PrepWise-Caregiver program helps caregivers of people with dementia prepare for emergencies. Early results suggest that this program is safe and aids caregivers in making emergency plans and building support networks. As a training program rather than a medical treatment, it poses no known physical risks or side effects. Previous testing demonstrated improved preparedness without any reported safety issues. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Disaster PrepWise-Caregiver program because it offers a hands-on approach to emergency preparedness specifically tailored for dementia caregivers. Unlike the standard handout guides from organizations like the Alzheimer's Association, this program involves a trained interventionist who helps develop a personalized household emergency management plan. This direct and personalized engagement could empower caregivers to better manage emergencies, potentially leading to improved outcomes for both caregivers and those with dementia during disasters.

What evidence suggests that the Disaster PrepWise program is effective for improving emergency preparedness in dementia caregiving?

Research has shown that the Disaster PrepWise (DPW) program, which participants in this trial may receive, is designed to help caregivers of people with dementia prepare for emergencies. This program offers personalized advice to create emergency plans and build support networks. Studies have found that supporting caregivers in this way can reduce their stress and delay the need to move a person with dementia into a care facility. This approach can make caregivers more resilient and better prepared to handle disasters. Early results suggest that this personalized support can lead to better outcomes for caregivers, making them feel more capable and supported. ^{1 2 3 4 6}

Who Is on the Research Team?

Sato Ashida, PhD

Principal Investigator

University of Iowa

Are You a Good Fit for This Trial?

This trial is for English-speaking adults who are family members or friends caring for someone with Alzheimer's disease or related dementias (ADRD). Caregivers can participate regardless of living situation with the individual. Excluded are caregivers of those in early stages like predementia, those in nursing homes, and anyone unable to consent or respond due to their own conditions.

Inclusion Criteria

I am a family member or friend of someone with Alzheimer's or related dementia.

Exclusion Criteria

Caregivers of individuals living in nursing homes and assisted living facilities will be excluded

My family member does not have predementia or mild cognitive impairment.

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)

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Baseline Assessment

Participants complete a baseline survey before randomization

1 week

1 visit (in-person or virtual)

Intervention

Caregivers in the intervention group receive the Disaster PrepWise program, while control participants receive a handout on emergency preparedness

6 months

Ongoing support and guidance

Follow-up

Participants complete follow-up surveys to assess changes in stress, resilience, self-efficacy, preparedness, and social networks

6 months

2 visits (virtual or in-person) at 3 and 6 months

What Are the Treatments Tested in This Trial?

Interventions

• Disaster PrepWise-Caregiver

Trial Overview

The study tests 'Disaster PrepWise', a program where trained volunteers help caregivers create emergency plans and support networks. The impact on caregiver resilience and stress will be measured against an information-only group. Assessments will occur at baseline, 3 months, and 6 months post-baseline.

How Is the Trial Designed?

Group I: Disaster PrepWise-Caregiver Intervention Experimental Treatment 1 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 II: Control Active Control 1 Intervention

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.

Who Is Running the Clinical Trial?

Sato Ashida

Lead Sponsor

Trials

2

Recruited

280+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Published Research Related to This Trial

Caregivers of individuals with dementia face significant challenges in disaster preparedness, which they recognize as an important responsibility, highlighting the need for tailored support and resources.

The study identified key themes related to barriers in preparedness, the importance of having a disaster plan, and strategies to enhance preparedness, suggesting that interventions could be developed to help caregivers manage the stress associated with these responsibilities.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Dementia Caregivers' Perspectives on Disaster Preparedness: Barriers, Resources, and Recommendations. Peterson, LJ., Hackett, SE., Dobbs, D., et al.[2023]

A study of 172 family caregivers found that higher resilience and lower burden are key factors associated with caregiver preparedness, while anxiety did not show a significant relationship.

Demographic factors such as gender, experience, and cohabitation status were identified as main predictors of preparedness, suggesting that targeted nursing interventions could enhance caregiver support and improve care quality.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Predictive model for the preparedness level of the family caregiver. Gutierrez-Baena, B., Romero-Grimaldi, C.[2022]

Caregivers of individuals with Alzheimer's or related dementia found that those in the early stages of the disease often wanted to be involved in disaster preparedness, but they sometimes resisted evacuation even when it was necessary.

As the disease progressed, caregivers noted that individuals showed less resistance to disaster decisions, but they also became less capable of participating in the preparation process.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Danger and dementia: caregiver experiences and shifting social roles during a highly active hurricane season. Christensen, JJ., Castañeda, H.[2014]

A one-day training program significantly improved confidence in dementia care management for over 50% of family caregivers on 11 out of 12 confidence items, with notable improvements in 4 specific areas.

The training, which included interactive elements and real-world case discussions using the DICE approach, was particularly effective for family caregivers, who showed greater confidence gains compared to professional caregivers in 6 out of 12 items.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Moving Evidence-Informed Assessment and Management of Behavioral and Psychological Symptoms of Dementia into the Real World: Training Family and Staff Caregivers in the DICE Approach. Kales, HC., Kern, V., Kim, HM., et al.[2021]

The Caring Ahead questionnaire, developed to assess family caregivers' preparedness for end-of-life care in dementia, has shown strong psychometric properties, including a 4-factor model and high reliability (Cronbach alpha > 0.7).

Caregivers reported feeling less prepared in areas such as understanding the dying process and discussing end-of-life preferences with healthcare providers, highlighting specific areas where targeted interventions could improve caregiver support.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluation of the Caring Ahead: Preparing for End-of-Life With Dementia Questionnaire. Durepos, P., Akhtar-Danesh, N., Sussman, T., et al.[2021]

Only one third of bereaved caregivers felt prepared for the death of their family member with dementia, with preparedness being more common among those enrolled in hospice care.

The study identified five key themes that caregivers associate with preparedness, highlighting its importance and suggesting a need for interventions to better support caregivers in managing the end-of-life process.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Preparedness for Death: How Caregivers of Elders With Dementia Define and Perceive its Value. Hovland-Scafe, CA., Kramer, BJ.[2018]

The PREPARE initiative successfully trained long-term care providers over 3 years, focusing on disaster preparedness for vulnerable older adults, using various educational methods including train-the-trainer sessions and distance learning.

Participating organizations showed significant improvements in disaster planning, community collaborations, and emergency response exercises, indicating the program's effectiveness in enhancing preparedness in long-term care settings.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A national initiative to train long-term care staff for disaster response and recovery. O'Brien, C., Selod, S., Lamb, KV.[2009]

A review of 569 existing tools measuring death preparedness among family caregivers of persons with dementia revealed that most tools (70%) do not adequately cover all relevant preparedness domains, limiting their effectiveness.

Only one tool specifically addressed caregiver preparedness for death and dementia, highlighting the need for a new questionnaire, 'Caring Ahead,' to better assess and improve death preparedness in this population.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Caregiver preparedness for death in dementia: an evaluation of existing tools. Durepos, P., Ploeg, J., Akhtar-Danesh, N., et al.[2021]

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This study is innovative in its use of a highly personalized disaster preparedness program with built-in assistance to support caregivers; the ...

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RePORT RePORTER - National Institutes of Health (NIH) |

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We previously developed and tested a disaster preparedness program for older adults, Disaster PrepWise, and showed its impact on improving ...