While a diagnosis of dementia can be devastating to an individual, the overwhelming loss, responsibility and decisions involved in a person’s care can be equally devastating to their caregiver.
A $1.1 million grant from the National Institute on Aging will help researchers at HealthPartners Institute’s Neuroscience Research Center continue to assess the effectiveness of a promising model for dementia care: Care Ecosystem.
The model, developed at the University of California-San Francisco, is a telephone- and web-based approach that uses care team navigators to help patients with dementia and their caregivers take charge of their care and connect with community resources like caregiver support groups, food delivery services and financial assistance programs.
HealthPartners has been running a Care Ecosystem program, with support from a Merck Foundation grant, since 2018, explained Michael Rosenbloom MD, director of HealthPartners Center for Memory and Aging. The new grant will fund further research into the approach’s effectiveness.
The 2018 clinical initiative took place over a four-year period, enrolling some 750 patient-caregiver pairs, Rosenbloom said. Patients and their caregivers usually learned about the Care Ecosystem program from Rosenbloom himself or from another medical provider. The patients were then referred to Rosenbloom, who did a workup of the patient and, when appropriate, gave them the dementia diagnosis that qualified them for the Care Ecosystem.
Being part of a supportive program like the Care Ecosystem is helpful for patients and caregivers, Rosenbloom said. When a caregiver feels stressed and unsupported, their health and well-being suffers. The Care Ecosystem program acknowledges that reality and takes a team approach to helping the patient and caregiver get the support they need.
“As patients progress with various types of dementia, their needs may become more challenging for their family members,” Rosenbloom said. “It is really hard to navigate the various resources that exist in the community to assist families. That’s where our team steps in.”
The Care Ecosystem team consists of two care team navigators, a social worker, a nurse, a physician and a coordinator who helps coordinate meetings and appointments. When a patient-caregiver pair is enrolled in the program, they are assigned a care team navigator, who offers check-ins via phone. The navigator helps the caregiver make connections to support organizations and provide helpful information for surviving this challenging time.
“Usually enrollees would get a call every month,” Rosenbloom said. “Because dementia gets worse over time, participants get surveys every six months about the experience. On an annual basis they have intake forms that are sent again that look at the same baseline data and sees if we made a difference with the Ecosystem.”
If the caregiver and patient present with a problem outside of the care team navigator’s area of expertise, they can call on the Care Ecosystem team or the team social worker to find a solution, Rosenbloom said. “We have weekly meetings where we discuss cases in multidisciplinary fashion. We brainstorm care options.”
The first iteration of the Care Ecosystem program has been a success with participants, Rosenbloom said, adding that when caregivers get the support they need, their loved ones are often able to stay at home longer.
“The lack of support for care partners may be a factor in people eventually transitioning to residential care. There are limited treatments available to modify this disease process. If you support the patient and their care partner, the outcomes might be better.”
Rosenbloom and his team measured the real-time impact of the program on participants. “We had measures for the dementia rating severity score which tells you how bad the dementia is,” he explained. For patients, he said, saw progression in their disease, “but measures of caregiver burden and mood remained stable. You’d expect that if a patient got worse over time it would affect the mood and burnout of the care partner. That did not happen in our study.”
The team’s analysis found a “significant” reduction in caregiver needs like coping with the social and emotional challenges of caregiving, finding help and sleep problems, Rosenbloom reported. Though the number of patient ER visits and hospitalizations were not reduced during the study period, caregivers’ mood and general well-being were not negatively impacted.
“We found that being involved in the Care Ecosystem found that over the four years there was a reduction in caregiver need to find help and support in the patients we evaluated,” Rosenbloom said.
In evaluations, participants were asked to comment on the program’s impact on their lives. Many emphasized the positive role the HealthPartners care team played. One care partner wrote: “When we got the diagnosis of Alzheimer’s disease, we felt pretty lost. … We now have a navigator who is there for us, whatever we may need. Without this, we would be lost.”
The National Institute on Aging grant will build on this existing research by helping to fund outreach to health systems around the nation, including in Colorado, Los Angeles, New Orleans and the Pacific Northwest, Rosenbloom said. HealthPartners’ participation in the study will be particularly important to this research because the system has good access to patient-caregiver pairs in rural populations in which many struggle to access outside resources.
Rosenbloom said he and his colleagues hope that expanded research results will help encourage governmental agencies to include the Care Ecosystem model in their benefit structures.
“Should results be favorable, it may help guide the Centers for Medicaid and Medicare Services and other payers to support these services which are not currently reimbursed,” he said. “For instance, a social worker or case manager’s services for these kinds of cases are not routinely reimbursed.” The hope is that study may prove the positive impact these services can have on the overall health and well-being of families facing dementia.
The results from the 2018 study will be useful in structuring the NIH project, as well as play a role in ongoing support and care of people with dementia and their caregivers, Rosenbloom said. “A lot of this work has led us to figure out what are the holes in what is offered in the journey of the person with dementia.”
Rosenbloom and his team are in the process of recruiting participants for the study. This part of the study will likely take over a year, he explained: “We have three care team navigators. Each are responsible for 75 patients. We are going to enroll 225 patient-caregiver dyads and we will be following their outcomes for another two years.”
Any remaining participants from HealthPartners’ first Care Ecosystem clinical initiative will not be eligible to enroll in the new study, Rosenbloom added. But participants will continue receiving assistance from a care team, he said: “It’s not like the needs of the prior participants go away. We are reassigning our case managers for the first cohort and helping to enroll the new patients and care partners.”