Caregivers Preparing for Their Own Health Care Emergency

The goal of this clinical trial is to help spousal caregivers of people with dementia be prepared in the case of their (the caregiver's) own health emergency, and ensure that in their absence, the person with dementia receives the care they need. Specifically, we are evaluating an online Emergency Preparedness Toolkit (EPT) with and without tailored coaching. The main questions it aims to answer are:

• Does the online EPT in combination with tailored coaching increase the success of spousal caregivers in completing the EPT, compared to the EPT alone?
• Does the online EPT in combination with tailored coaching increase the success of spousal caregivers in identifying and engaging a standby caregiver, compared to the EPT alone?
• Does the online EPT with tailored coaching increase spousal caregiver preparedness, confidence, and self-efficacy compared to the EPT alone?
• What other barriers do spousal caregivers face when identifying and engaging a standby caregiver for their spouse with dementia?

There are 2 cohorts in this study.

1. Cohort 1: Usability Testing: Prior to the start of enrollment into the randomized controlled trial, approximately 10 caregivers will participate in a preliminary developmental phase where the usability and functionality of the online EPT will be evaluated.
2. Cohort 2: Clinical Trial: Approximately 68 caregivers will be enrolled into the randomized controlled trial. These caregivers will be randomized 1:1 to one of two groups:
   • EPT-A Group: This group will complete the EPT alone, with no assistance from a coach. However, technical support will be provided as needed.
   • EPT-C Group: This group will complete the EPT with the assistance of a trained coach. Technical support will also be provided as needed.

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.