Caring for care givers

Posted at 9:00 PM, May 23, 2016
and last updated 2016-05-23 23:40:22-04

OMAHA, Neb. (KMTV) - America is aging and the greatest costs associated with that reality are both obvious and hidden.

One disease in particular is gobbling up a dizzying amount of taxpayer money every year and analysts predict it will only get worse. The money need to care for people with Alzheimer’s disease and other forms of dementia is immense:  in Nebraska alone taxpayers will pay $302 million to take care of Alzheimer’s and dementia patients on Medicaid in 2016. In Iowa, that figure is $602 million. 

Much of that cost comes in the form of hospital stays that doctors say can be easily avoided by stopping minor health issues before they develop into serious problems.  That is because Alzheimer’s and dementia patients require an enormous amount of care as their disease progresses;  much of that burden falls to untrained family members who suddenly find themselves trying to diagnose and treat behavior and symptoms that lead to larger health problems if left untreated.

Dealing with the stress of monitoring the health of an ailing loved one with dementia can be physically, financially, and emotionally exhausting, says Neurologist Dr. Daniel Murman, “It is a sacrifice. If someone is younger, often a spouse will quit working and be home, to provide care. And it’s not a one person job.”

Lee Wollenhaupt is caring for his wife Linda, who was diagnosed in 2013 with early onset Alzheimer’s disease. The couple used to travel the world but since Linda’s diagnosis their journeys are few and closer to their home in Red Oak, Iowa. “It’s just easier being home,” Lee said, explaining that Linda is more comfortable following a routine in a familiar environment. 

Both are retired but Lee now works around the clock caring for Linda, “The toughest thing is to see someone that you love lose the ability to do the things they've always done," Lee said. “There's been a time or two she'd say, ‘Am I getting' worse?’ And I say ‘yeah’. And that's pretty tough to say.”

There are nearly 5.5 million Americans with Alzheimer’s disease and other forms of dementia, by 2050 that number is expected to grow to 14 million according to the American Alzheimer’s Association.
The Alzheimer’s Association estimates that loved ones spent a cumulative of 18 billion hours caring for family or friends in the last year. It estimates that time was worth more than $220 billion which is more than the Gross Domestic Product of 166 countries.

“If we spend money the way we're doing now we're going to by mediocre care and spend a tremendous amount.” Dr. Steve Bonasera is leading research at UNMC in Omaha, searching for ways to cut the costs of Alzheimer's care by caring for caregivers.

Bonasera’s trial involves families in Nebraska and Iowa, who have a family member diagnosed with Alzheimer’s or dementia. Each is assigned a care navigator, a person trained to help caregivers recognize warning signs of larger problems, like someone not eating or a bladder infection, and address them while they’re manageable, and relatively inexpensive to treat.

Care navigators are also trained to ask caregivers about their mental and emotional health and guide them through the emotional process of caring for a parent or relative with the disease, such as making sure one person isn’t shouldering most of the work or creating long term plans for caring for the patient.

“The navigators are an ideal person to care about the family, care about the caregiver,” said Bonasera.

Why is that important?

Information published by the Centers for Disease Control show Alzheimer's and dementia patients are admitted to the hospital 3-times more than other Medicare and Medicaid recipients
The government will spend an estimated $236 billion hospital stays for those patients in 2016 according to the Alzheimer’s Association.

“Every dollar that is spent, potentially, without getting a lot of bang for your buck, in healthcare, is a dollar that can’t be spent for education, keeping our bridges in good shape, or whatever,” explains Bonasera.

Bonasera's work is funded in part by the government as it looks for ways to improve Alzheimer’s care and lower costs.

Advocate groups and doctors agree care navigator programs have the potential to reduce the costs directly and indirectly associated with care, and provide needed emotional and practical support to caregivers like Lee.
“Care giving is tough. It’s very tough,” he says. “But I can’t imagine what it’s like living with the disease.”