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.