Responding to the Needs of Persons Living With Dementia and Their Caregivers During the COVID-19 Pandemic: Lessons From the Care Ecosystem

Abstract

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.

Further development needed: models of post-diagnostic support for people with dementia

“…An example of the work of specialist dementia clinics are clinics based in the USA that use the Care Ecosystem case management program. Early in the COVID-19 pandemic, clinics responded to declines in function and behaviour of the person with dementia and the increasing burden and concerns of carers by increasing the frequency and duration of calls, conducting webinars, providing ideas for in-home activities, supporting compliance with masks, and aiding the use of new technology [40 ▪ ]. Clinics were able to support dyads through their established structure of telephone contact [40 ▪ ].…”

End-of-Life Experiences Within a Dementia Support Program During COVID-19: Context and Circumstances Surrounding Death During the Pandemic

“…This study informs how dementia care programs such as Care Ecosystem can tailor and broaden care protocols to include specific information and address COVID-19 related needs for improved communication, care coordination and support targeted toward social isolation. 23 …”

The impact of the COVID‐19 pandemic on services for community‐dwelling adults and people with dementia, and their families' intentions to use those services

“…Innovative strategies using technology and social media would be necessary to improve quality care for older adults residing in both urban and rural settings. 4…”

“…Furthermore, concerns regarding infection risk associated with face‐to‐face and group‐based service usage by PWD and their families also affect the use of services. 3 , 4 Understanding how the nearly 2‐year pandemic affected services for community‐dwelling adults and intention to use services might contribute to considering sustainable service delivery systems in the future.…”