Caregivers Preparing for Their Own Health Care Emergency

Summary
The overarching goal of the proposed work is to engage spousal caregivers of patients with dementia to plan
for their own health emergency. Serious, unexpected health events such as hospitalization of a caregiver can
become a major disruption to the caregiving relationship. Often the caregiver has not planned for such
unexpected events where they may become ill. The project specifically focuses on the online development and
testing of an Emergency Preparedness Toolkit (EPT). The EPT is designed for caregivers, in the event of an
emergency, to provide a standby caregiver with detailed plans of how to care for the person with dementia.
Interventions which support a caregiver are known to reduce caregiver burden and delay or offset the need to
place a person with dementia in a care facility. Particularly challenging for some caregivers is the identification
of a standby caregiver, especially if they do not have nearby family/friends. Previous work using the paper
version of the EPT indicated that some caregivers had difficulty identifying a standby caregiver, recognizing the
value of using the EPT and/or stalled by the amount of work needed for EPT completion. The online version of
the EPT will provide tailored guidance to the caregiver and may increase the number of caregivers who identify
a standby caregiver and are able to complete the EPT. Alternatively, caregivers may require coaching in
addition to the online EPT format. Therefore, once the EPT is developed into an online format, spousal
caregivers will be recruited and randomized to receive access to the EPT either with or without a coach. The
first aim is to compare the two groups as to their ability to identify and engage a standby caregiver. Once the
caregiver has successfully completed the online EPT they will they provide it to the standby caregiver. The
second aim is to compare the change of spousal caregiver preparedness, confidence, and self-efficacy
between groups. The third aim will examine the barriers and facilitators for spousal caregivers to identify and
engage a standby caregiver for a person with dementia.

Grant Number: 5R21AG089840-02
NIH Institute/Center: NIH
Principal Investigator: Rebecca Boxer