Dementia causes substantial burdens for patients, their caregivers, and health care systems. Recent and potential changes in health care policy indicate a shift towards reimbursement models that could sustain evidence-based dementia care. Currently, there is a wide gap between best practice in dementia and real- world care delivery. Scalable, effective, and patient-centered dementia care models that are aligned with trends in reimbursement reform are needed now. The Care Ecosystem is a dementia support program that combines elements of effective programs into a scalable model that could be successful in the new policy environment. Care is delivered via the phone and web by unlicensed Care Team Navigators, who are trained and supervised by a nurse, social worker, and pharmacist. Proactive care modules focus on caregiver support and education, medication consultation, support around medical, financial, and legal decisions, and behavior management. We are evaluating the short-term impact of the Care Ecosystem on psychosocial and economic outcomes in a randomized controlled trial, funded by the Centers for Medicare and Medicaid Innovation. Patients and caregivers from rural and urban locales, with a range of socioeconomic characteristics, and cohorts of Spanish and Cantonese speaking persons are included. Short-term (6 month) results suggest benefit, and we expect that the greatest impact of our care program will be realized in the long term across all stages of dementia. This proposed project would continue the care and measurement in our existing cohort to determine the 5-year treatment effects and to characterize the patients and caregivers most likely to benefit.
In Aim 1, we will evaluate the Care Ecosystem's effects on patient quality of life, time to nursing home placement, cost of care, and caregiver burden, depression, and health across the disease trajectory.
In Aim 2, we will determine the differential treatment effects by rural/urban locale, household income, ethnic minority status, and by severity of behavioral symptoms, caregiver burden, and social isolation.
In Aim 3, we will determine the effects of Care Ecosystem on end of life care among patients who die. By clarifying the impacts of this scalable dementia care program, our project would provide important guidance as health systems determine what dementia care services to provide and to which beneficiaries. In addition, results would provide a framework for caring for a diverse population of patients and caregivers across the care continuum.

Public Health Relevance

Dementia places substantial burdens on patients, families, and healthcare systems. The Care Ecosystem, a continuous and proactive dementia care program that supports caregivers and complements primary care, is designed to alleviate these burdens and is scalable. To guide healthcare systems and clinicians on how to improve dementia care, we propose to study the long-term (5 year) effects of the Care Ecosystem and to understand the types of patients and caregivers most likely to benefit.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Research Project (R01)
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Special Emphasis Panel (ZRG1)
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Onken, Lisa
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University of California San Francisco
Schools of Medicine
San Francisco
United States
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