The Care Ecosystem Consortium Effectiveness Study

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. 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, lower caregiver depression, and reduced potentially inappropriate medication use (Possin et al., 2019; Liu et al., 2022). The investigators propose a rapid pragmatic trial in 6 health systems currently offering the Care Ecosystem program in geographically and culturally diverse populations. The investigators 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. The investigators will evaluate the effectiveness of the Care Ecosystem on outcomes important to patients, caregivers, healthcare providers, and health systems during the pandemic. By evaluating the real-world effectiveness in diverse health systems that are already providing this model of care, 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.

Inclusion criteria, PWD participantAge 18+Provision of verbal consent (or surrogate consent), documented in REDCap, and assentWillingness to enroll in the Care Ecosystem programLives in the community (i.e., not in an assisted living, board & care, skilled nursing or memory care facility) at the time of enrollmentHave a dementia diagnosis documented in the EHRHas had a visit with the referring provider in the last 12 monthsHas a caregiver with a primary level of responsibility for the patient who is eligible and willing to participateInclusion Criteria, Caregiver participantAge 18+Provision of verbal consent, documented in REDCapHas a primary level of responsibility for the care of a PWD-participant who is enrolling in the studyWillingness to enroll in the Care Ecosystem program and complete surveysExclusion Criteria, PWD participantPWD-participants for whom a substantial amount of the patient's healthcare utilization records cannot be accessed for research purposes by the study team. (see Note)Is currently, or was ever enrolled, in the Care Ecosystem program.Medical documentation indicates that the patient's dementia is a non-progressive type (e.g., due to a head injury or stroke, and not expected to progress).Note: This exclusion criteria will be operationalized differently at each site based on variations in data access options for their patient population; these options will include EHR and Medicare. A small percentage of participants may be enrolled from underrepresented populations for whom a substantial amount of utilization records cannot be accessed with written approval from the study PI.