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Alzheimer's cases, costs continue to skyrocket

DONNA GRETHEN/TNS ILLUSTRATION

By CHRIS STEWART | Dayton Daily News, Ohio | Published: June 25, 2016

DAYTON, Ohio (Tribune News Service) — Alzheimer’s disease is the country’s sixth-leading cause of death, and it is projected to afflict nearly 14 million Americans by mid-century, nearly tripling the amount of current cases.

Along with the emotional blows delivered by the degenerative brain disease, the cost of care for Alzheimer’s — which often lasts for years — eclipses that of all others and threatens to overwhelm a stretched health care system and sap caregivers’ life savings.

Dick Smith of Kettering is among the 5.2 million Americans over 65 — including 210,000 Ohioans — to be diagnosed with Alzheimer’s. A doctor gave the news to Dick and his wife, Jeannie, at the end of March.

“I wasn’t at that point in time convinced I had it,” Dick said. “I had a pair of old slippers and I still wear them. They would catch on things then I would kind of stumble and drag my feet. That’s one of the signs.”

Looking back, Jeannie said a real tipoff came at least two years ago when her “rocket scientist” husband, a retired aerospace engineer, began having trouble with math and other normally routine tasks.

“We finally ended up making the appointment with the doctor when he put his coat on upside down three times. The collar would be on his back and the tail of the coat would be up around his neck,” Jeannie said. “He had difficulty getting the blankets straight on the bed … He quit helping much in the kitchen because it was confusing.”

Dick, 77, was used to driving big projects ahead at Wright-Patterson Air Force Base. He worked on everything from laser weapons to hypersonic planes to the Space Shuttle during his career. He was among the first to figure out how to connect new personal computers to the base’s data center using then-revolutionary fiber-optic cable.

A lifelong love of automobiles, particularly those manufactured in Great Britain, led Dick to become a car collector and later a founder of the British Transportation Museum in Dayton.

Now he’s turned over his car keys to Jeannie.

“It’s hard for anybody to give up driving. That’s a whole lot of your independence. It’s even harder for men,” Jeannie said. “And then a man whose life has revolved around cars and working on cars, and raised in an era where fathers and sons hung out and talked about their cars … Not driving was a big thing and he did it very gracefully.”

This year, an estimated $236 billion will be spent on caring for Americans with Alzheimer’s and other types of dementia, according to the Alzheimer’s Association. Nearly half that total — $117 billion — comes from Medicare reimbursements. Medicaid, out-of-pocket payments and other expenses make up the remainder.

“It’s already three times more expensive if they have an Alzheimer’s diagnosis than for somebody who doesn’t because everything’s more complicated — and they have that for eight, 10, 15 years,” said Eric VanVlymen, executive director of the Alzheimer’s Association’s Miami Valley Chapter. “For all of us, whether we are impacted or not, we are financially (impacted) as a country because the number of people is going to triple, then the costs are going to triple.”

Nearly one out of every five Medicare dollars goes toward those with Alzheimer’s and other forms of dementia. Driven by aging Baby Boomers who are living longer, projections show that much more money will be spent in the coming years.

Alzheimer’s disease, which often is overlooked as normal aging, can’t be prevented, cured or slowed.

“It’s a fatal neurological disease,” VanVlymen said. “It’s not just getting older, which most people associate with it. And it’s not just a little memory loss.

“Memory loss is one of the first symptoms, but this is a neurodegenerative disease that works on all areas of the brain and slowly creates deficits in all areas of the brain to a point where they can’t breathe. Their body forgets how to breathe and swallow.”

VanVlymen said physicians sometimes are reluctant to give patients a diagnosis that doesn’t leave some hope for recovery. But problems arise when family members aren’t told and are left unable to identify or explain changed behaviors in loved ones.

“A lot of times (family members) blame the person with dementia,” VanVlymen said.

Doctors reveal an Alzheimer’s diagnosis to only 45 percent of patients with the disease or their caregivers, according to the Alzheimer’s Association.

“These disturbingly low disclosure rates in Alzheimer’s disease are reminiscent of rates seen for cancer in the 1950s and 60s, when even mention of the word cancer was taboo,” said Beth Kallmyer, an Alzheimer’s Association vice president, when the report was released last year.

“It is of utmost importance to respect people’s autonomy … When a diagnosis is disclosed, they can better understand the changes they are experiencing, maximize their quality of life, and often play an active role in planning for the future.”

It’s unclear whether doctors leveled with Randy Begley and told him he had another form of dementia, or if the Franklin man was misdiagnosed years ago. But his daughter Danielle Begley is certain her dad, once a gregarious master of multiple levers and pedals on heavy machinery, missed out on receiving potential new therapies because a definitive diagnosis came too late.

“If we could have gotten an accurate diagnosis he probably could have had some trials, different drug trials. But it took at least three years to get him properly diagnosed,” Danielle said. “Because he was so young, that was the last thing doctors think of … They were telling him it was depression, or he needed to change his diet.”

Randy, now 62, was given an Alzheimer’s diagnosis five years ago, but the disease had progressed so far that he didn’t qualify for trials, said Danielle, who lives in Miamisburg.

Drugs can ease symptoms for a time, but the disease marches on unimpeded, VanVlymen said.

Scientists are working to unravel protein buildups in the brain called plaques and tangles, which are believed to be responsible for damaging and killing nerve cells. But therapies to delay onset or reverse the disease remain elusive.

Earlier this month, the Senate Appropriations Committee approved a $400 million increase that would bring Alzheimer’s research spending through the National Institutes of Health up to nearly $1.4 billion for 2017.

About one in nine people aged 65 or older have Alzheimer’s, and about two-thirds are women. Women by about the same proportion also become primary caregivers.

Jeff Reid said it wasn’t until he had taken a more active role in caring for his father before his death that he realized the enormous stress his mother had been under as the primary caregiver of an Alzheimer’s patient.

Reid’s father, Mark, died at 67 from the disease in 2010.

“My poor mom, what she went through,” he said. “You never knew what he was going to get into. We changed the locks on the door because he would get out and wander. She worked a full day and would have to come home and deal with different sleeping patterns. She went through a time when he’d be up for 24 hours then sleep for 24 hours.”

Reid, 43, of Vandalia, said he and his wife, Kate, moved his parents closer to them in 2008 so they could take a more active role in care. Soon, caring for his father changed his family life with their three young children and sometimes his work schedule: “Suddenly it’s your life, too.”

“I got called home several times from work because he did something or got into something,” he said. “You’re wondering what’s happening and then you have to leave. It impacts your daily life.

“My wife had to make sacrifices because evenings I wanted to be with them, there were times when I couldn’t because I had to go help my mom.”

According to the Alzheimer’s Association, more than 15 million Americans provided more than 18.1 billion hours of unpaid care to those with Alzheimer’s and other dementias in 2015. That time was valued at $221.3 billion. On average, caregivers lose more than $15,000 in annual income as a result of reduced work hours or quitting jobs.

Reid said drawing awareness to Alzheimer’s is key to educating the public and drawing support for programs that might ultimately relieve the strain on families and federal resources.

“There are a lot of implications of this disease that are all no good,” he said. “The more we can put into research, the more we can put into advocacy, the more we can put into early detection, the better off we all individually and collectively will be.”

Dick Smith said he’s doing everything possible to keep his scientific mind making rational decisions as long as possible, though both he and Jeannie know the ultimate outcome.

“People who go around with their head down, woe is me, that’s what they get paid back with,” Dick said.

Jeannie said she “turns problems into projects” and is reading all the research she can find on the disease. She keeps Dick as active as possible.

“We’re still doing things, we’re still living,” she said. “We still see family. We still do all things anybody else can do. Later it will change, but that’s true of anything. Life is not a solid thing. Life is fluid, and we are blessed.”

©2016 the Dayton Daily News (Dayton, Ohio)
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