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NCT Number: NCT06635876

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.

Active, Not Recruiting

This study is active but is not currently recruiting participants.

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Key information

Conditions

Dementia Behavior Behavioral Symptoms Brain Diseases Caregiver Burden Central Nervous System Diseases Mental Disorders Nervous System Diseases Neurocognitive Disorders Stress, Psychological

Age range

55 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

University of California - Davis

Sacramento, California, 95817, United States

Who can participate

Healthy volunteers accepted: No

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

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

Treatment and study plan

Coaching Sessions

Behavioral

The coach will use motivational interviewing techniques to:

  • To assist and guide the caregiver to establish a standby caregiver relationship
  • To assist and guide the caregiver as to how to use the EPT

Primary outcomes

  1. 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.

Secondary outcomes

  1. 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.

  2. 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.

  3. 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).

  4. 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.

  5. 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.

Sponsors and collaborators

Lead sponsor

University of California, Davis

Other

Collaborators

  • National Institute on Aging (NIA)

Registry information

Official study title

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

Important dates

Study start
2025
Primary completion
2026
Study completion
2026
First posted
Oct 10, 2024
Registry last updated
May 5, 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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