Caregivers Preparing for Their Own Health Care Emergency
- Conditions
- DementiaCaregiver Burden
- Interventions
- Behavioral: Coaching Sessions
- Registration Number
- NCT06635876
- Lead Sponsor
- University of California, Davis
- 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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- NOT_YET_RECRUITING
- Sex
- All
- Target Recruitment
- 68
- Must be 18 years of age or older at the time of signing the informed consent
- Must self-identify as the spouse or partner of the PWD
- Must provide some caregiving to a PWD
- Must live in the same dwelling as the PWD
- 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
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- PARALLEL
- Arm && Interventions
Group Intervention Description EPT-C Coaching Sessions The EPT-C group will receive two coaching sessions to assist with the completion of the EPT.
- Primary Outcome Measures
Name Time Method Completion of the EPT six weeks from the baseline visit Six weeks This will be measured using de-identified data from the EPT system.
- Secondary Outcome Measures
Name Time Method Identification and engagement of a standby caregiver six weeks from the baseline visit Six weeks This will be measured using de-identified data from the EPT system.
Change in caregiver preparedness from baseline to Month 3 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.
Change in caregiver confidence from baseline to Month 3 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).
Change in caregiving self-efficacy from baseline to Month 3 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.
Qualitative data and theme identification from participant experience surveys and EPT-C coaching session recordings 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.
Trial Locations
- Locations (1)
University of California - Davis
🇺🇸Sacramento, California, United States