It’s well known that caring for someone with dementia can challenge even the best caregivers and that it can lead to health problems in both caregivers and their charges.
But a recent study found that people with dementia whose caregivers are depressed go to emergency rooms almost twice as much — nearly twice a year versus roughly once annually — as those being supervised by caregivers who aren’t diagnosed with depression.
Dr. Stephen Bonasera, a co-author of the study and an associate professor of geriatrics at the University of Nebraska Medical Center, said the amount of the increase in ER use surprised him. It also underscored the seriousness of the problem and the need to find ways to help.
The good news: The main finding from that study by researchers at UNMC and the University of California San Francisco is that a program that connects caregivers to a trained care navigator via telephone and Internet improved quality-of-life measures for both dementia patients and caregivers in as little as 12 months, when compared with usual care.
The study, published online last month in JAMA Internal Medicine, came out of a $10 million grant from the federal Center for Medicare & Medicaid Innovation, which supports the development and testing of innovative health care payment and service delivery models.
Bonasera, co-investigator for the grant, said the program was one of four nationwide looking at better ways of caring for patients with Alzheimer’s disease, the most common type of dementia.
Sign up for the Live Well Nebraska newsletter
Get the latest health headlines and inspiring stories straight to your inbox.
The number of Americans with Alzheimer’s, which now stands at about 5.8 million, is expected to grow over the next several decades as the number of older Americans increases. That’s expected to tax the nation’s health care system — and its health care budget.
“We think we can make real improvement in patients’ and families’ quality of life and more efficiently spend our resources if we do a better job of caring for families who are dealing with Alzheimer’s disease,” Bonasera said.
The UNMC-UCSF study followed 780 pairs of dementia patients and caregivers in urban and rural areas in California, Nebraska and Iowa, all of whom were living at home. Of those, 655 pairs were still participating after a year and 571 completed a survey at the end of 12 months.
The care team navigators not only provided education and support but also coordinated care with a team of dementia experts — an advanced practice nurse, a social worker and a pharmacist — who could be brought in as needed to address issues that required greater expertise. Teams delivered care from hubs in San Francisco and Omaha. The program did not replace the care patients received from their regular doctors.
Bonasera said calls were initiated more often by the caregivers than by navigators. If an issue arose, a caregiver could call and get the navigator’s take on it. Having the navigators available gave caregivers a neutral contact who didn’t bring judgment or family history to the table, a common problem when family members are caring for a loved one. That allowed caregivers to more fully explore questions and concerns and become better caregivers.
The navigators also got to know the families. They became familiar with what was typical for a patient and could advise caregivers when problems needed to be further checked out by a nurse or another provider.
In addition, the navigators were familiar with common problems and could supply answers quickly, saving caregivers time and stress. If Dad was starting to wander, the navigator might recommend camouflaging doorknobs. The navigators also were familiar with the resources, such as respite care, available within local communities, whether Bellevue or Broken Bow. In many cases, families weren’t aware of the resources in their communities, Bonasera said.
At the end of 12 months, caregivers who participated in the program reported improved quality of life and reduced ER use for dementia patients and decreased depression and burden themselves.
While the Medicare funding has ended, the National Institutes of Health has agreed to provide five years of additional funding to continue the study.
Bonasera said the program offers a way to provide more dementia care at less cost than it would take to hire lots of nurses and doctors. Those professionals instead would be better tasked with overseeing such large outreach efforts.
“In a situation where we’re relying on caregivers to be the backbone (for) caring for people with dementia, anything we can do to make a caregiver’s life easier is something we need to look into,” he said.
The next question, he said, will be how to take such programs from clinical trials to versions health systems can implement. Each of the four programs takes a different approach, so leaders could choose the one that best fits their particular location.
17 rare and unusual health stories out of Omaha
One rare disease left an Omaha doctor eating a shakelike formula to supplement her diet. A friend said it tasted like cat food. An Omaha man woke up after his family took him off life support. And a Lincoln teen is allergic to almost everything.
Check out the stories on their unusual ailments and sometimes equally unusual treatment plans.