Caregivers Preparing for Their Own Health Care Emergency

May 1, 2026 updated by: University of California, Davis

Piloting an Online Emergency Preparedness Toolkit for Caregivers Preparing for Their Own Health Care Emergency

The proposed research will develop and test an online Emergency Preparedness Toolkit to help caregivers prepare for their own unexpected health events. Caregivers of persons with dementia often ignore their own health needs as their primary focus is the care of the person with dementia. This can lead to a caregiver delaying their own care and subsequently emergent health events. The Emergency Preparedness Toolkit provides guidance to the caregiver as to how to identify and transfer care to a standby caregiver. The goal is to provide a caregiver with the security and comfort that the person with dementia will be well cared for while they care for their own health needs.

Study Overview

Status

Active, not recruiting

Conditions

Intervention / Treatment

Detailed Description

Caregivers for people with dementia (PWD) make up a diverse group of individuals and can include family, friends, and paid direct care workers. However, those living in the same household, frequently the spouse/partner of the PWD, provide the bulk of care and are instrumental to a PWD's quality of life (Brodaty & Donkin, 2009; Ornstein et al., 2019; Rykkje, 2019). While providing care can be rewarding (Tarlow et al., 2004), some caregivers may feel caregiver burden and become self-neglectful (e.g., eating poorly, poor exercise habits, sleep deprivation) (Perkins et al., 2013; AARP & National Alliance for Caregiving, 2020) which has the potential to lead to poor health and outcomes among caregivers (Pinquart & Sörensen, 2007; Adelman et al., 2014). Serious, unexpected health events, such as hospitalization of the caregiver, can become a major disruption. In fact, we found that a PWD is at a significant increased risk of hospitalization within six months if their spousal caregiver is hospitalized, resulting in the "break-up" of the caregiving relationship (Boxer et al., 2023). Often the caregiver has not planned for such unexpected events where they may become ill (Whitlatch & Orsulic-Jeras, 2018; Pearce et al., 2012). Interventions which support a caregiver can reduce caregiver burden and delay or offset the need to place a PWD in a care facility (Mittelman et al., 2006; Yaffe et al., 2002; Young et al., 2020). There are numerous supports available for a caregiver to prepare for the eventual decline and adverse outcomes of a PWD. This increased preparedness and confidence decreases caregiver distress (Wawrziczny et al., 2017). However, there is a gap in structured support and planning for a caregiver with their own health crisis. A recent study indicated that caregivers may feel prepared for their caregiving role but less prepared for someone else to assume the role of caregiving (Turner et al., 2023). Therefore, we developed the Emergency Preparedness Toolkit (EPT) for caregivers to prepare for their own health emergency.

The EPT, focused on day-to-day care for the PWD, guides a caregiver to identify a "standby" caregiver to immediately step in and successfully care for the PWD. The EPT was developed using a user-centered mixed methods approach with stakeholder surveys, interviews (n=488), and subsequent reviews by 142 spousal caregivers. Findings from this work indicated that spousal caregivers need increased support to utilize this tool, as well as the ability to tailor the EPT for their specific dyad needs. Caregivers indicated the EPT prompted them to consider changes for the overall care plan for the PWD. Users require the EPT to be adaptable, responsive to changes as dementia advances, and easily transferable between caregivers.

Spousal caregivers are the target population for this work in that they usually live with the PWD and provide daily routine support to the PWD. Spousal caregivers tend to be older, more likely to have chronic conditions and therefore at higher risk for illness and hospitalization. Thus, spousal caregivers may glean the most benefit from being prepared for their own hospitalization. We portend that efforts to prepare and support the spousal caregiver will benefit the outcomes of both spousal caregiver and PWD.

Study Type

Interventional

Enrollment (Estimated)

68

Phase

  • Not Applicable

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • California
      • Sacramento, California, United States, 95817
        • University of California - Davis

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Description

Inclusion Criteria:

  • Must be 55 years of age or older at the time of signing the informed consent
  • Must self-identify as the spouse or partner of the PWD (may be subject to independent verification per PI discretion, e.g., medical record review or a signed doctor's note)
  • Must provide some caregiving to a PWD
  • Must live in the same dwelling as the PWD

Exclusion Criteria:

  • Diagnosis of dementia
  • Unable to use or does not have access to a computer
  • Complete deafness or blindness and/or unable to use a telephone
  • Condition that prevents them from performing caregiving duties or providing physical/emotional support to the PWD
  • Unable to follow directions
  • Unable to read or write in English
  • Participation in prior study involving the EPT

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Primary Purpose: Prevention
  • Allocation: Randomized
  • Interventional Model: Parallel Assignment
  • Masking: Double

Arms and Interventions

Participant Group / Arm
Intervention / Treatment
Active Comparator: EPT-C
The EPT-C group will receive two coaching sessions to assist with the completion of the EPT.
Behavioral: Coaching Sessions

The coach will use motivational interviewing techniques to:

  1. To assist and guide the caregiver to establish a standby caregiver relationship
  2. To assist and guide the caregiver as to how to use the EPT
No Intervention: EPT-A
The EPT-A group will be responsible for completing the EPT alone, without coaching sessions.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Completion of the EPT six weeks from the baseline visit
Time Frame: Six weeks
This will be measured using de-identified data from the EPT system.
Six weeks

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Identification and engagement of a standby caregiver six weeks from the baseline visit
Time Frame: Six weeks
This will be measured using de-identified data from the EPT system.
Six weeks
Qualitative data and theme identification from participant experience surveys and EPT-C coaching session recordings
Time Frame: Three months
This will be measured using a qualitative descriptive approach and theme identification, based on participant experience surveys and EPT-C coaching session recordings.
Three months
Change in caregiver preparedness from baseline to Month 3
Time Frame: Three months
This will be measured using the Caregiver Preparedness Scale (CPS). Responses are rated from 0 to 4. The higher the score, the more prepared the caregiver feels for caregiver; the lower the score, the less prepared the caregiver feels.
Three months
Change in caregiver confidence from baseline to Month 3
Time Frame: Three months
This will be measured using a Likert scale of caregiver confidence from "completely confident" to "not at all confident". Responses will be grouped into two categories: confident (completely confident, fairly confident, or somewhat confident) or not confident (slightly confident or not at all confident).
Three months
Change in caregiving self-efficacy from baseline to Month 3
Time Frame: Three months
This will be measured using the Revised Scale for Caregiver Self-Efficacy (RSCSE). Responses are rated from 0 to 100. The higher the score, the more self-efficacious the caregiver feels about caregiving; the lower the score, the less self-efficacious the caregiver feels.
Three months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of California, Davis

Collaborators

National Institute on Aging (NIA)

Investigators

  • Principal Investigator: Rebecca S Boxer, MD, MS, University of California, Davis

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

July 18, 2025

Primary Completion (Estimated)

June 1, 2026

Study Completion (Estimated)

July 1, 2026

Study Registration Dates

First Submitted

October 8, 2024

First Submitted That Met QC Criteria

October 8, 2024

First Posted (Actual)

October 10, 2024

Study Record Updates

Last Update Posted (Actual)

May 5, 2026

Last Update Submitted That Met QC Criteria

May 1, 2026

Last Verified

May 1, 2026

More Information

Terms related to this study

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 2180909
  • 1R21AG089840-01 (U.S. NIH Grant/Contract)
  • 5R21AG089840-02 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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