How a 'Care Ecosystem' Supports Dementia Patients and Caregivers
This low-tech approach has shown the ability to greatly improve quality of life
In recent years, we’ve seen a greater awareness in the U.S. and the world about the increasing number of people with Alzheimer’s disease and other dementias. And we’ve learned a lot more about the emotional and financial difficulties their family members endure as they struggle to care for their loved ones.
One health care organization working to improve the quality of life of Alzheimer’s patients and their caregivers is the Center for Memory and Aging at the University of California San Francisco (UCSF). As part of its “Care Ecosystem” program, trained “care team navigators” (CTNs) serve as main points of contact to answer questions and concerns from caregiver/patient pairs. And the center is now working with other health care organizations to set up their own Care Ecosystems.
Recent research has shown that this type of program works. For example, an article in the May 2019 Journal of the American Geriatrics Society about health care workforce issues concluded that “evidence-based programs focused on supporting caregivers have been shown to result in fewer nursing home admissions and use of acute care services.”
Since the U.S. is expected to see a steep increase in Alzheimer’s diagnoses over the next few decades, more support for caregivers from health care organizations will be needed. In a March 2018 Journal of Palliative Medicine article that addressed improvements for dementia caregiving, researchers from the University of Pittsburgh and the RAND Corp. stated that “fundamental changes are needed in the way we identify, assess and support caregivers. Educational and workforce development reforms are needed to enhance the competencies of health care and long-term service providers to effectively engage caregivers.”
A Team-Based Approach With Telephone Support
Launched by UCSF’s Memory and Aging Center in 2013, the Care Ecosystem program has demonstrated significantly promising results for providing increased levels of important support services for dementia caregivers and patients.
The program is doing this with some relatively simple technology by today’s standards: regularly scheduled, personalized phone calls, along with directing caregivers to important web-based services that can help with the challenges and issues they customarily face.
The Care Ecosystem takes a team-based approach in which advanced-practice nurses, pharmacists and social workers who have dementia expertise collaborate with care team navigators. These CTNs are unlicensed, but trained, and caregivers are encouraged to call them whenever a question or concern arises related to dementia care.
"They wrapped their arms around us. They were kind and patient. All of it, every step of the way, was incredible, compassionate and thorough, like I had never seen before."
Having a care team navigator as a primary point of contact is unique because in most dementia care support systems, an advanced-practice nurse typically takes on that responsibility. “We think this care team navigator is both cost efficient and, perhaps, provides better care because the navigator has time to spend on the phone with the patients and families to build rapport, to show empathy and really be a partner with the family as they face the challenges of dementia,” says Katherine Possin, UCSF associate professor of neurology.
“This is time that a nurse might not have, because there just aren’t enough dementia specialist nurses out there, and because they are more expensive,” Possin adds.
High Praise From a Caregiver
Helen Medsger was a primary caregiver for 13 years of her older sister, Maureen Shaw, who was diagnosed with Lewy body dementia. During the last two years of Shaw's life, the sisters took part in the Care Ecosystem program at UCSF.
“They [the Care Ecosystem team] wrapped their arms around us,” Medsger says. “They were kind and patient. All of it, every step of the way, was incredible, compassionate and thorough, like I had never seen before.”
A Navigator’s Perspective
Mahnoor Allawala has been a care team navigator for a little more than two years. She took on the job after earning her undergraduate degree in neurobiology from the University of California Berkeley. “I was looking for a job that involved a clinical role,” she says, adding that her long-term goal is to attend nursing school and become a nurse practitioner.
“When I came across this job, I saw that it had patient and caregiver interaction, so I thought it was a perfect load,” Allawala says. She adds that the first few months of training were “very challenging because I had little knowledge of dementia and what caregivers do and how difficult the disease can be.”
Now that she’s a veteran CTN, Allawala acknowledges the work can be emotionally draining at times. But she accepts the many challenges she experiences with the 55 to 60 patient/caregiver pairs she interacts with regularly.
Occasionally, there are situations when the care team navigator can only do so much, such as when there are negative family dynamics or challenging financial issues that are extremely difficult to resolve.
“Sometimes caregivers will vent, and it is kind of leading nowhere and they may be fixating on one thing,” Allawala says. “I’ve learned to redirect caregivers and try to focus on clarifying goals, and try to be more supportive, but also try to provide concrete pieces of advice which can get them out of that mindset. A lot of times it’s just a lot of emotional support.”
She says she has gotten to know the caregivers and patients under her purview “very well” and that “there is a really lovely bond that forms. It has been really great working with them.”
Studying the Program's Progress
Since UCSF launched the Care Ecosystem in 2013 with $100,000 in seed money, the program has received more than $16.9 million in funding from a Centers for Medicare and Medicaid Innovation grant and a National Institutes of Health grant.
The program recently published results of a clinical trial it conducted with 780 patient/caregiver pairs in California, Nebraska and Iowa for 12 months. The study kept track of these pairs, who were supported via two centralized Care Ecosystem hubs at UCSF and the University of Nebraska Medical Center, according to a September 2019 article in the Journal of the American Medical Association (JAMA) Internal Medicine article.
"We are trying to work with (other) health systems now, to help them set up the Care Ecosystem as partners."
The trial concluded that the Care Ecosystem service improved quality of life for patients, reduced emergency department visits and decreased caregiver depression and burden. The article noted that “effective care management for dementia can be delivered from centralized hubs to supplement traditional care and mitigate growing societal and economic burdens of dementia.”
A Care Ecosystem prime goal has always been to enable other health systems and clinics to provide dementia-capable care to the growing population affected by this insidious disease. Today, six clinics have adopted the program, working diligently at ensuring that the Care Ecosystem program remains stable, sustainable and financially sound.
“We are trying to work with (other) health systems now, to help them set up the Care Ecosystem as partners,” Possin explained in a recent JAMA Internal Medicine author interview podcast. “We provide a free toolkit and staff trainings, video trainings on our website, and we make them all available at no charge. If there is the interest and the feasibility to set up this kind of program, we want to make it as easy as possible to adopt this program and adapt it to their health system.”
Minnesota Clinic Seeing Positive Outcomes
One of the partners is the HealthPartners Center for Memory and Aging, a specialized clinic based in St. Paul, Minn., serving dementia patients and their caregivers. The Merck Foundation awarded HealthPartners a four-year, $1.5 million grant to implement a Care Ecosystem to improve access to follow-up care and support for underserved patients with dementia and their families.
“It is our plan to make this sustainable beyond the four years [of the grant],” says Dr. Michael Rosenbloom, a neurologist and director of the Center for Memory and Aging.
“It has made a huge difference for our clinic,” Rosenbloom says. “I can’t tell you how many times there are issues that may crossover when I see a patient in our office. For example, one of our navigators might say, ‘Oh, Dr. Rosenbloom, this patient is having problems swallowing, please put in a speech referral,’ or they are having problems with their balance and would benefit from physical therapy.
"So, some of the things you can’t get to at a twenty- to thirty-minute visit, the CTN is able to assess and then have me get the intervention going with a referral or an order," he continues. "It has improved the care that we deliver. I know that my patients are getting more detailed action plans for their disease.”