Clinical Research Directory

Emergency Preparedness for Caregivers of Persons With Dementia: Disaster PrepWise

Individuals with dementia and their families are especially vulnerable during a disaster as it limits caregivers' ability to continue with care due to disaster related stress and reduced access to resources and support. The COVID-19 pandemic showed the extreme vulnerability of persons with dementia (PWD) and their caregivers as they struggled to access support and resources due to the threat of COVID-19 infection; such impact was exacerbated in rural areas where caregivers are geographically isolated and disaster management resources are scarce. With the number of federally declared disasters increasing dramatically over the past 50 years, active public health efforts are needed to support caregivers in developing emergency caregiving plans usable in disasters such as pandemics and extreme weather emergencies. The long-term goal of this project is to enhance emergency preparedness and support networks of caregivers of PWD to increase their resilience and minimize distress by implementing an intervention program, Disaster PrepWise (DPW). In the DPW program, a trained Medical Reserve Corp (MRC) volunteer will provide step-by-step guidance to caregivers to jointly develop emergency preparedness plans and personal support networks. The objectives of this proposed study are to 1) test the impact of DPW on caregiver outcomes (i.e., resilience, stress) and perceptions that may mediate the association between DPW and outcomes (caregiver self-efficacy, preparedness, social support); and 2) evaluate implementation strategies in a real-world setting to optimize future dissemination. We will conduct a randomized control trial of 250 caregivers of persons with dementia involving two arms: DPW intervention group and an information-only control group (print information on disaster preparedness). Assessments will occur before randomization (baseline), and 3 and 6 months after the baseline. This study is innovative in its use of a highly personalized disaster preparedness program with built-in assistance to support caregivers; the support will be provided through an existing national-level public health infrastructure (MRC) that has a great potential to reach older adults and caregivers in rural areas. The knowledge and data obtained through this study will lay the foundation for a future larger-scale multi-state pragmatic trial to assess dissemination potentials.

Evaluating the Effectiveness and Implementation of Caregiver Support Initiatives for Caregivers of Older Patients in Singapore

We are evaluating the caregiver support initiatives at a tertiary hospital in Singapore (Tan Tock Seng Hospital - TTSH) provided to caregivers caring for older patients. The evaluation will focus on 1) evaluating the process / delivery / implementation of these initiatives to caregivers and 2) the outcomes of caregivers and their care recipients after receiving these caregiver support services at TTSH. Research questions are as follows: Process evaluation: 1. How are the bundle(s) of caregiver support initiatives at TTSH delivered to caregivers? 2. What and how was impact achieved for these initiatives? Outcome evaluation: 3. Did caregivers (and patients) benefit from these support initiatives and how? 4. Which aspects of the caregiver support initiatives are most beneficial to caregivers (and patients)? Eligible caregivers will be invited to take part in the study and to complete 3 surveys and an optional interview over the period of their care recipients' hospital stay at TTSH, and 2 months after discharge. During their care recipients' stay, they may be introduced to any of the caregiver support initiatives, based on their needs. Caregivers enrolled in this study will take part in 3 surveys - 1 conducted at the beginning of care recipients' hospital stay, 1 conducted around the discharge period and 1 conducted one month after discharge. The aim of the surveys is to find out if caregivers have attended or used any of these services and whether they benefited from them.