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.
Background The Care Ecosystem is a telephone‐based dementia care program that is delivered by trained lay heath workers called Care Team Navigators (CTNs) who are supported and supervised by a clinical team with expertise in dementia (Possin, et.al., 2019). We hypothesized that health systems interested in implementing the Care Ecosystem would benefit from an asynchronous online training course to help prepare a dementia‐capable workforce. Method With a grant from the Merck Foundation, faculty and staff from the UCSF Memory and Aging Center and UC Hastings College of Law developed a series of brief videos (∼10min). Content was adapted for a lay, adult‐learner audience. Multiple choice post‐test questions were written to reinforce content. A Likert scale and an open‐ended question were used to collect feedback for each video. Presentations and quizzes were reviewed by our multidisciplinary team in monthly meetings and over email. Audio was recorded using a smartphone application and spliced with slides into an mp4 video using basic movie editing software. The Canvas Network platform was selected for ease of use, broad availability, and free user account options. Result The Care Ecosystem Training was released in September 2019 with a link embedded on the Care Ecosystem website (memory.ucsf.edu/care‐ecosystem) and email distribution to three implementation sites. By January 2020, 44 students enrolled in the course, 130 quizzes on 34 topics were completed with an average quality rating of 4.6 (out of 5). Conclusion The Care Ecosystem Training demonstrates that simple, broadly available technology can be used to increase access to dementia care training. A peer review process helps tailor content for a lay health workforce. The Care Ecosystem Training is designed to be used with the Care Ecosystem Toolkit, and supplemented by clinical observation and case discussions with local clinicians. By prioritizing ease of access for users, the ability to collect user data may be limited. Feedback from quizzes will be used to improve the course.
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