Authors: Marian O. Hodges, M.D., MPH, medical director, Providence Senior Health
Nicholas Olney, M.D., neurologist, Providence Brain and Spine Institute
September is recognized internationally as Dementia Awareness Month, providing an important time to talk about caring for people with dementia and their families. In the United States, more than 6.5 million people live with dementia, and more than 16 million people provide unpaid care to support them.
Caring for those who are vulnerable is central to the Providence Mission, but we know that patients with dementia and their caregivers do not always receive the support they need. That’s why the Care Ecosystem program is so important.
Working with our partners
The $7.6 million NIH grant supports research on the Care Ecosystem program at six health systems in the U.S. Participants in the research grant include the University of California San Francisco (lead organization), Providence, large nonprofit health systems in Los Angeles and Colorado, and others.
Providence Foundations of Oregon also is fortunate to have received generous support from the JTMF Foundation to help launch and expand Providence’s participation in Care Ecosystem.
How the program works
Care Ecosystem is modeled on an innovative, evidence-based program1 from UCSF that provides monthly phone check-ins by nonclinical care team navigators who are supported by a team of providers, nurses and a social worker with dementia expertise. Navigators are specially trained to screen for dementia-related needs, provide community resources, and assist with care coordination, all of which is documented in an Epic care plan to keep the primary care team informed.
Working with primary care teams
During the three-year pilot phase, the Care Ecosystem program will grow to include 10 Providence Medical Group clinics in Oregon. Clinics are selected based on need, patient population and provider interest. At present, participating Providence Medical Group clinics are: PMG-Northeast, PMG-Gateway Internal Medicine, PMG-Gateway Family Medicine and PMG-Plaza. There also are plans to expand into the North Coast market.
Primary care providers who have referred to Providence Care Ecosystem value this connected care model and how it helps ease the way for everyone involved. "For one of my patients, the Care Ecosystem team identified some needs that I had not previously asked about or recognized during office visits,” said Mari Kai, M.D., Providence Medical Group-Northeast. “It was really helpful to pick up some needs that affect my patient's quality of life.”
Advantages of the Care Ecosystem model
This innovative, cost-saving model improves the quality of life for people with dementia and their caregivers, while also aiming to reduce ED utilization and ease burdens on primary care clinics. The interdisciplinary clinical team reviews patient updates weekly with the navigators to help address clinical questions and coordinate care with the primary care team.
Feedback from family caregivers say the program has helped them immensely:
- A patient’s daughter received help explaining the dementia diagnosis to her mom’s spouse. “It feels good to know if I need to, I can call you. I appreciate all the information you shared with me.”
- When a family caregiver felt overwhelmed during a patient’s hospitalization, the navigator helped talk with the inpatient nurse and family together. “I reached out to the navigator because she already knows our situation.”
- Receiving monthly check-ins from the navigator helps the family caregiver not feel so isolated. “It makes me feel like I’m not so alone. It’s nice to know someone else is out there who cares about us.”
With six participating health systems, the program over time will have more data to support and hopefully expand this model, both at Providence and elsewhere. Our goal is that this will become the standard of care for patients with dementia and their families.
Also contributing to this article is Mary Beth Kuebrich, ARNP, Providence Senior Health and PMG-Northeast.
Additional resources:
For more information about the Care Ecosystem program:
Contact nora.perry@providence.org
For free dementia resource guides (limited supply):
Providence Oregon clinics can request a free box of 25 copies of “Help is Here: When Someone You Love Has Dementia,” made available by a generous donor to Providence Foundations of Oregon. Co-written by Dr. Hodges and Anne P. Hill, the book is a guide for family caregivers of patients who have dementia. Please email itzel.castellanos@providence.org to request books. All requests are supported on a first-come, first-served basis.
1 Possin KL, Merrilees JJ, Dulaney S, et al. Effect of Collaborative Dementia Care via Telephone and Internet on Quality of Life, Caregiver Well-being, and Health Care Use: The Care Ecosystem Randomized Clinical Trial. JAMA Intern Med. 2019;179(12):1658–1667. doi:10.1001/jamainternmed.2019.4101
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