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

Trial Summary

What is the purpose of this trial?

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.

Will I have to stop taking my current medications?

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

What data supports the effectiveness of the treatment Disaster PrepWise-Caregiver for dementia caregiving?

The PREPARE program, which is similar to Disaster PrepWise-Caregiver, showed improvements in disaster planning and emergency response among long-term care providers, suggesting that targeted training can enhance preparedness in caregiving settings. ^{1 2 3 4 5}

How does the Emergency Preparedness Training for Dementia Caregiving treatment differ from other treatments for dementia caregiving?

This treatment is unique because it focuses on training caregivers of people with dementia to be better prepared for emergencies, which is not typically addressed in standard dementia care. It aims to enhance caregiver resilience by developing disaster preparedness plans, a novel approach compared to traditional caregiving methods that often focus solely on daily care and end-of-life planning. ^{1 2 6 7 8}

Research Team

Sato Ashida, PhD

Principal Investigator

University of Iowa

Eligibility Criteria

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

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

Caregivers of individuals living in nursing homes and assisted living 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)

Timeline

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

Treatment Details

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.

Participant Groups

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+

Findings from Research

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 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]

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]

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 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]

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]

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]

References

1. Australia pubmed.ncbi.nlm.nih.gov

Predictive model for the preparedness level of the family caregiver. [2022]

2. United States pubmed.ncbi.nlm.nih.gov

Dementia Caregivers' Perspectives on Disaster Preparedness: Barriers, Resources, and Recommendations. [2023]

3. United States pubmed.ncbi.nlm.nih.gov

Danger and dementia: caregiver experiences and shifting social roles during a highly active hurricane season. [2014]

4. United States pubmed.ncbi.nlm.nih.gov

A national initiative to train long-term care staff for disaster response and recovery. [2009]

5. England 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. [2021]

6. England pubmed.ncbi.nlm.nih.gov

Caregiver preparedness for death in dementia: an evaluation of existing tools. [2021]

7. United States pubmed.ncbi.nlm.nih.gov

Evaluation of the Caring Ahead: Preparing for End-of-Life With Dementia Questionnaire. [2021]

8. United States pubmed.ncbi.nlm.nih.gov

Preparedness for Death: How Caregivers of Elders With Dementia Define and Perceive its Value. [2018]