Nebraskans Cope with Early-Onset Alzheimer's Disease

Early-onset Alzheimer's is a rare form of the disease, but doctors say it can be more degenerative. (File photo)
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February 22, 2018 - 6:45am

Alzheimer’s disease affects 5 million Americans over the age of 65. A more rare form of the illness is known as early-onset Alzheimer's. It affects people younger than 65 and as young as 30. 

There are about 200,000 Americans suffering from early-onset Alzheimer’s disease. With both early-onset and late-onset Alzheimer’s, people develop memory and thinking problems that interfere with their everyday tasks. But early-onset can hit people 10 to 20 years earlier in life than late-onset Alzheimer’s.

LuAnne (left) and Brad Anderson (right) share a moment. (Photo courtesy Brad Anderson)

Dr. Daniel Murman works directly with Alzheimer’s patients at the University of Nebraska Medical Center. He said the disease degenerates parts of the brain which can control motor functions like swallowing or walking. While Alzheimer’s disease itself may not be fatal, it leaves patients susceptible to pneumonia and other illnesses that can prove deadly.

"I think there's a misconception that they're too young to have Alzheimer’s and if there are warning signs that this is more than just benign forgetfulness; it’s important to take it seriously and pursue whether it could be early-onset Alzheimer's," Murman said.

Murman said in general, only one or two percent of patients with Alzheimer’s have genetic factors which play into the cause of the disease. But when looking at early-onset Alzheimer’s, the figures jump to 40 or 50 percent.

"I think we could say with some of these genetic forms that it can be more aggressive -- progress more quickly," Murman said.

Murman said there is so much we don’t understand about Alzheimer’s in general, but the picture is becoming clearer. 

"In these genetic forms the onset can be as early as the late 30s. (But) most commonly – even with early-onset – it's often in the late 40s or 50s," Murman said.

LuAnne (right) and Brad Anderson (left). (Courtesy photo Brad Anderson)

Brad Anderson’s wife LuAnne was diagnosed with a rare form of Alzheimer’s in 2010 at the age of 55. It affected her frontal temporal lobe, which influences speech and visual recognition.

“And there wasn't a point of saying, ‘by the way this is killing you,’” Anderson said. “So all we did was try to give her the best quality of life, give her things that she could do and try to keep her engaged as best we could.”

LuAnne passed away in January 2017 in Lincoln, after battling the disease for seven years.

“You're so involved with the day to day that you almost don't notice the burden you're carrying,” Anderson said.

Anderson said the first four years were normal, but the last two years were the most challenging.

“You're dealing with grief this whole time, every day when you lose something else, you grieve for that loss,” Anderson said. “You grieve for the things you don't have anymore. That person that you married, you still love that person.”

Anderson says he and LuAnne were walking around at Walgreens early in the year she was first diagnosed. She pointed to the red decorations and asked what they were for. She couldn’t comprehend what they were for, even after Anderson explained to his wife they were for Valentine’s Day. He didn’t realize that he started grieving then. 

"But what I did start seeing is that every little bits of her are going away a piece at a time and you're watching it in slow motion," Anderson said.

Anderson said when he started looking for a long term facility for LuAnne, the costs were staggering. They started at $6,000 a month, and that was on the low end.

Mike Hughbanks has early-onset Alzheimer's, but he isn't giving up. (Photo by Brandon McDermott, NET News)

“So imagine trying to try and plan for something like that when long term care insurance -- if you have it – it has limitations,” Anderson said.  Without long-term care insurance the only option that's out there to help is Medicaid.”

Anderson and his wife were able to qualify for Medicaid through a program called Spousal Impoverishment. It allows couples to separate their assets and “impoverish” the sick spouse. It allows couples to stay married and get the funds needed for care.

“Give me the medication, fix it -- give me the pill,” Hughbanks said. “I want the cure, what is it? Of course he had to tell us well there's not one,” Mike Hughbanks said. 

Hughbanks suffered a couple of stress-related strokes, the first in 2010. Then in 2015, after multiple CAT scans and MRIs, he was diagnosed with early-onset Alzheimer’s.

“I wasn’t going to go home and sit and die,” Hughbanks said. “That was one of the first things that we had talked about.”

Hughbanks said his health insurance deductions from his check went from $300 a month to nearly $2,500 a month after being diagnosed and needing medications.

"Prairie Dance" by Brad Anderson (written for his wife LuAnne)


Her voice is on the wind

The breeze, her soft caress

Her smile the prairie sun 

The stars shine in her eyes


She dances on the hilltop

A joyous prairie jig

Grass sprites leap to join her

Fairies fill the air


They join their sister spirit

In a jig beneath the moon

Birds raise up their song

For these spirits of the dance


Elves take up their instruments 

She plays the penny whistle 

Frogs and crickets sound the rhythm

As she dances to the beat


Stars give way to dawn

As the music finally fades

Where dancers once made merry

Only footprints now remain


Peace and solitude return

Quiet beauty claims its place

Silence lowers its veil

With the gentle morning dew 


The radiance of her spirit

Pervades my solitude

In the wind across the hilltop

The silence calls her name


I walk amidst her memory 

Through the tallgrass and the dreams

I dream upon the hilltop

Of her spirit and her dance

Being diagnosed when he was 58, Hughbanks didn’t qualify for Medicare right away because he was under 65. He is now on Medicare. He is also hoping for more research to one day find a cure or create new medicines to fight the disease. But he’s facing it on his terms.

“It's like looking the grim reaper in the face and saying ‘Not yet.’ I'm not giving up,” Hughbanks said.

Along with short-term memory loss, memory of certain words will disappear at random times. Hughbanks noticed an issue with spelling too.

"Short-term memory stuff is an issue but I can still drive," Hughbanks said. "I probably wouldn't leave known areas to me like Omaha without having Debra with me."

Debra Thomas is Hughbanks’ wife. She said since coming to terms with the enormity of the disease, there‘s no reason to be scared.

“If you stop and think it's not the end – the end will be there,” Thomas said. “Because this is what Alzheimer’s looks like.”

And being a caregiver, someone who is committed to giving the best quality of life for a patient, can be overwhelming and draining.  

“I probably grieved harder with it than Mike has; I think because I know what's in front,” Thomas said.

Thomas said she has always lived her life looking to the future. She said her husband’s Alzheimer’s diagnosis has challenged that notion.

“It is almost freeing, to stop doing that,” Thomas said. “When you stop doing that, you can just look at the moment and appreciate it.”

At a time when Hughbanks could have isolated himself, he decided to help others with Alzheimer’s. He gives speeches at the Alzheimer’s Association of Nebraska, posts about living with the disease for his online blog and talks one-on-one with others suffering.

“You're talking to someone else that's been there and maybe they know firsthand the type of feelings that you're going through,” Hughbanks said.

Hughbanks said when he’s able to share his story with another Alzheimer’s patient, hopefully both of them get something out of the experience. 

“Today is the best day of my life and tomorrow's going to be too,” Hughbanks said. “That's the attitude that I want to instill in people with a diagnosis.”

Those like Hughbanks with early-onset Alzheimer’s know research is vital to finding new medications that can combat the disease, as no known cure exists. Some discouraging news, though, came recently from Pfizer. The American pharmaceutical company announced it is shutting down its Alzheimer’s research and cutting 300 researchers.

Brad Anderson, who lost his wife to Alzheimer's in 2017, speaks about being a caregiver for someone with the disease, how to live in the moment and how to get a better perspective.




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