Background and Objectives
The COVID-19 pandemic created challenges for persons with dementia, their caregivers, and programs that support them. The Care Ecosystem (CE) is a model of dementia care designed to support people with dementia and their family caregiver dyads through on-going contact with a care team navigator (CTN) and an expert clinical team. CTNs provide support, education and resources and help dyads manage dementia-related concerns as they evolve over the course of the disease. We aimed to understand how the Care Ecosystem responded to the needs of dyads during the initial three months of the COVID-19 pandemic.
Research Design and Methods
We conducted a survey and qualitative interviews with staff members from four established Care Ecosystem programs located in four different states to explore 1) challenges dyads voiced during the pandemic, 2) CE staff approaches to addressing the needs of dyads and 3) programmatic challenges faced and lessons learned.
Findings
Nine staff members from four Care Ecosystem programs with an active collective caseload of 379 dyads were interviewed. Themes were identified that included dyad concerns regarding fear of illness, changing attitudes towards long term care, decreased availability of services and resources, and impacts on patient and caregiver health and well-being. Programmatic challenges included maintaining effective communication with dyads and program staff, technological readiness, workflow restructuring and program sustainability.
Discussion and Implications
Approaches in supporting people with dementia and their caregivers should demonstrate flexibility, responsivity, and creativity and these findings provide insight for understanding how dementia care programs can be positioned to offer continuous support for this vulnerable population.
Translational Significance
During the pandemic, persons with dementia and their caregivers reported concerns relating to viral exposure, functional and behavioral decline of the person with dementia, difficulty accessing resources, changing attitudes towards long term care and experiences of loneliness and isolation. The Care Ecosystem, a supportive dementia care model, faced challenges relating to program sustainability and workflow. Telephone-based and scheduled contacts with dyads, along with strong organizational and community partnerships were factors in supporting dyads. Results from this study inform programs on ways to support persons with dementia and their caregivers during unexpected events that threaten public health and safety.