The hope is that by providing this individualized support, we can improve the caregiver quality of life, the patient’s quality of life, help prevent caregiver burnout, and we can reduce avoidable emergency room visits and other kinds of medical crises.
Dr. Emily Brickell, neuropsychologist at Ochsner and a co-investigator on the Care Ecosystem grant
According to the World Health Organization (WHO), approximately 55 million people across the world have dementia — as many as 7% of adults aged 60 and older. If current trends hold steady, and the proportion of older people in the population continues to increase in nearly every country, the number of people diagnosed with some form of dementia is expected to rise to 78 million in 2030 and 139 million in 2050.
Doctors and healthcare professionals say the rise in dementia numbers is taking a toll on everyone involved: on the quality of life of the person suffering from dementia, on their caregivers — often their spouses or adult children — and on healthcare systems.
“We want to think about this being maybe one of the defining public health crises over the next 20 to 30 years,” said Dr. John Sawyer, a neuropsychologist and the co-director of Ochsner’s Cognitive Disorders and Brain Health Program.
As demand for treatment and care resources for dementia increases, the healthcare industry is struggling to keep up.
“Let’s say there was some sort of ‘magic pill’ that could cure anyone of dementia,” explained Sawyer. “There would still be a huge problem because it takes, on average, about two years to get an assessment.” Currently, there are not enough specialists in the United States to serve those who need treatment and resources for dementia.
The problem is compounded in places like Louisiana, where the population tends to have more chronic health issues. Type 2 diabetes, high blood pressure, high cholesterol, heart disease, and other conditions that disproportionately affect Louisianans, can lead to neurocognitive problems as people age.
“Those are going to make dementia more common because your brain can’t hold up as well as someone without those conditions,” Sawyer said. “So [the lack of specialists] is particularly relevant for our state and our region.”
In an effort to address the deficit of support, doctors and medical researchers are creating a new model of dementia care called the Care Ecosystem program. Developed at the University of California, San Francisco (UCSF), in 2013, Care Ecosystem is a 12-month program that provides individualized support to both patients and their caregivers across the nation.
“It’s essentially designed to provide a framework for providing proactive support to families,” said Dr. Emily Brickell, neuropsychologist at Ochsner and a co-investigator on the Care Ecosystem grant. “It’s really personalized to their needs and helps caregivers plan ahead and address issues before they’re emergencies. The hope is that by providing this individualized support, we can improve the caregiver quality of life, the patient’s quality of life, help prevent caregiver burnout, and we can reduce avoidable emergency room visits and other kinds of medical crises.”
The way Care Ecosystem works is that each family is assigned to a care team navigator (CTN) who serves as the main point of contact and is trained to provide support and education over the phone. The CTN calls the caregivers at least once a month to check in, but is available to them whenever they are needed, especially at the beginning of the program, when needs tend to be highest.
Brickell said people often begin Care Ecosystem in the midst of a crisis.
“That’s often how they got referred to us,” she said. “Something happened, you know, mom started wandering or forgetting things, and they realized they had to do something about it, so they ended up with us.”
Those early days of the program can involve multiple calls a week, but caregivers eventually learn how to monitor and look after their loved one, all the while knowing Care Ecosystem will be there if and when they need it. This support is crucial as it can take months to get an appointment to even see a neurologist or psychiatrist.
CTNs are trained to help families navigate challenging behavioral symptoms like hallucinations or extreme agitation, and other symptoms of dementia, such as wandering and insomnia. But CTNs do more than just give advice or training over the phone, they also assist with other services, such as accessing resources in the community, like setting up “Meals on Wheels” deliveries for those that have trouble making food for themselves.
Providing care over the phone or by video conference also saves caregivers from having to provide transportation for frequent doctor visits.
Recently, Ochsner Health was awarded a $700,000 grant as part of a network of institutions that received a total of $7 million from the National Institute on Aging (NIA) and the National Institutes of Health (NIH) to study the effectiveness of Care Ecosystem. While the program has been up and running in New Orleans for a couple of years, it was previously funded through philanthropic donations.
The lack of funding limited access to the program, and the new grant is a formal opportunity to expand it. Doctors like Brickell and Sawyer say that the goal is to get Medicare coverage for Care Ecosystem, which would open it up for thousands of Louisiana’s most vulnerable seniors.
Through the study funded by the grant, they’re hoping to show that the program is both medically and cost-effective, and that it’s worth it for Medicare to consider covering services like it.
“It’s sort of like convincing the healthcare systems themselves that this can be beneficial,” Brickell said. “But more broadly, convincing Medicare, because what Medicare does, the rest of healthcare follows.”
While Medicare coverage is available for many suffering with dementia, programs like Care Ecosystem offer a new approach that could be beneficial to the patient. Regular check-ins provide preventative care that can catch problems before they become too serious and result an emergency room visit.
Medicare already acknowledges that preventative care and early detection are beneficial through some of the services it offers to seniors.
“Medicare provides an annual wellness visit that typically includes a dementia assessment for early detection,” said Ashlee Zareczny, compliance supervisor at Elite Insurance Partners, an insurance brokerage whose primary market is Medicare.
Zareczny said that while there are currently a number of public programs geared toward those with dementia — including long-term care services for those who are eligible — dementia presents differently in every person, so it requires a special touch.
“When it comes to dementia, individualized care and support are extremely important.”
While it’s too early to tell what the results of the study funded by the recent grant will say, if the past few years serve as an indicator, the expanded program will show the benefits of Care Ecosystem. Some clinical trials of the program have already shown that it improved quality of life, reduced emergency department visits, and decreased caregiver depression and burden.
Dementia is a broad term for a difficult disease that currently has no cure. Programs like Care Ecosystem offer a new way forward in dementia care, one that provides hope for patients and their loved ones.
For more information on the Care Ecosystem Program through Ochsner Health System, visit ochsner.org/services/cognitive-and-memory-disorders.
DID YOU KNOW? Up to three-quarters of people worldwide with dementia have not received a diagnosis.
