The Care Ecosystem Response to COVID-19: Accelerating Research on Dementia Care that Meets the Needs of Caregivers and Persons with Dementia during COVID-19

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PROJECT SUMMARY/ABSTRACT Dementia causes substantial burdens for patients and caregivers, which have been exacerbated by the COVID- 19 pandemic. The current state of dementia care is inadequate to meet the needs of this growing, vulnerable population. Scalable, effective, and person-centered dementia care models that are aligned with value-based healthcare reforms are needed now. The Care Ecosystem is an accessible, remotely delivered team-based dementia care model, designed to add value for patients, providers and payers in complex organizational and reimbursement structures. Care is delivered via the phone and web by unlicensed Care Team Navigators, who are trained and supervised by a team of dementia specialists with nursing, social work, and pharmacy expertise. Care Protocols guide proactive, quality care that is documented in the electronic health record. The evidence base to date suggests that the Care Ecosystem improves outcomes important to people with dementia, caregivers, and payers when delivered in a controlled research environment, including reduced emergency department visits, higher quality of life for patients and lower caregiver depression. We propose a rapid pragmatic trial in 6 health systems serving geographically and culturally diverse populations. We will leverage technology, delivering care via the phone and web and using electronic health records to monitor quality improvements and evaluate outcomes while maximizing external validity. In Aim 1, we will use implementation science to identify the model adaptations, facilitators, and barriers to implementing and sustaining the Care Ecosystem during the COVID-19 pandemic. In Aim 2 we will use mixed methods to rigorously evaluate the effectiveness of the Care Ecosystem on outcomes important to patients, caregivers, healthcare providers, and health systems during the pandemic. In Aim 3, we will characterize the patient and caregiver factors associated with treatment benefit. This will include investigating effectiveness in underrepresented groups and elucidating unmet needs that will guide future development work. By simultaneously evaluating the real-world effectiveness and implementation strategies in diverse health systems, this project will bridge the science-practice gap in dementia care during an unprecedented time of heightened strain on family caregivers, healthcare providers and health systems. Furthermore, this work will pave the way for expanding access to high quality dementia care in the future, mitigating the negative impact of dementia on patients and their families across the nation.