Caregivers Preparing for Their Own Health Care Emergency

NCT06635876 | Active Not Recruiting

• 3 other identifiers: 21809091R21AG089840-015R21AG089840-02
• Study Type: interventional
• Target: 68
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Dementia; Caregiver Burden

Outcome Measures

Primary Outcomes (1)

• Completion of the EPT six weeks from the baseline visit

  This will be measured using de-identified data from the EPT system.

  Six weeks

Secondary Outcomes (5)

• Identification and engagement of a standby caregiver six weeks from the baseline visit

  Six weeks

• Change in caregiver preparedness from baseline to Month 3

  Three months

• Change in caregiver confidence from baseline to Month 3

  Three months

• Change in caregiving self-efficacy from baseline to Month 3

  Three months

• Qualitative data and theme identification from participant experience surveys and EPT-C coaching session recordings

  Three months

Study Arms (2)

EPT-C

ACTIVE COMPARATOR

The EPT-C group will receive two coaching sessions to assist with the completion of the EPT.

Behavioral: Coaching Sessions

EPT-A

NO INTERVENTION

The EPT-A group will be responsible for completing the EPT alone, without coaching sessions.

Interventions

Coaching Sessions BEHAVIORAL

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

EPT-C

Eligibility Criteria

• Age: 55 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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

You may not qualify if:

• 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

Sponsors & Collaborators

• National Institute on Aging (NIA): collaborator
• University of California, Davis: lead

Study Sites (1)

University of California - Davis

Sacramento, California, 95817, United States

Location

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Related Links

• AARP, National Alliance for Caregiving. Caregiving in the U.S. 2020. AARP; 2020. doi:10.26419/ppi.00103.001
• National Research Summit on Care Services and Supports for Persons with Dementia and Their Caregivers: Report to the National Advisory Council on Alzheimer's Research, Care, and Services.; 2018.
• Reinhard S, Ryan E. Stepping Up to Support Family Caregivers. blog.aarp.org. June 7, 2016. https://blog.aarp.org/thinking-policy/stepping-up-to-support-family-caregivers

MeSH Terms

Conditions

Dementia; Caregiver Burden

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders; Stress, Psychological; Behavioral Symptoms; Behavior

Study Officials

• Rebecca S Boxer, MD, MS

  University of California, Davis

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: DOUBLE
• Who Masked: INVESTIGATOR, OUTCOMES ASSESSOR
• Purpose: PREVENTION
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 8, 2024
• First Posted: October 10, 2024
• Study Start: July 18, 2025
• Primary Completion (Estimated): June 1, 2026
• Study Completion (Estimated): July 1, 2026
• Last Updated: May 5, 2026

Record last verified: 2026-05

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)