Unlike the most common type of dementia, Alz-heimer’s, LBD (as it’s commonly called) is not particularly well-known and is often misdiagnosed by doctors in part because there is no simple test for it.
“It can look like other disorders,” said Angela Taylor, director of programs for the Lilburn, Ga.-based Lewy Body Dementia Association. “It can look like Alzheimer’s in its early stages, or other psychiatric disorders. It’s tough to tease out if not all symptoms are present or if the doctor is not familiar enough.”
She said many symptoms resemble Parkinson’s, and the disease often includes persistent and recurring hallucinations.
Robert Bowles, a 71-year-old retired pharmacist from Thomaston, Ga., said that at first, it seemed like he had Parkinson’s. “I’d stand up, take a few steps, pass out,” he said. But when doctors gave him anti-psychotic drugs, he would become catatonic.
It took 18 months and a battery of tests and doctors to come to the conclusion that he had LBD. His mindset quickly went dark. “I thought I was issued a death sentence,” Bowles said.
“I struggled for almost a year feeling hopeless. I didn’t see a path forward. I had to decide whether I wanted to live or die.”
At 1 a.m. one day, he asked God for guidance because he felt like he was making his family suffer. “God spoke to me,” Bowles said. “He said, ‘I’m not through with you. Just as you loved, cared for, educated and encouraged patients at the pharmacy, you now have a mission.’”
So Bowles began sharing about the disease at public forums and conferences. He did 20 events alone last year. William Hu, his doctor and an Emory University neurologist who studies dementia, calls Bowles a “one-man crusader to get the word out.”
Taylor said there needs to be more advocates like Bowles because there is a broad lack of awareness of LBD despite the fact it affects at least 1.4 million Americans in total, based on her group’s estimates. It’s the second-most common type of dementia behind Alzheimer’s, which affects an estimated 5.7 million people.
LBD is named after German neurologist Dr. Friedrich Lewy, who discovered the abnormal proteins in 1912.
LBD attracted attention when actor Robin Williams, who had an especially aggressive form of the disease, committed suicide in 2014 at age 63.
Casey Kasem, the radio DJ known for hosting “American Top 40,” died of LBD the same year at age 82. And former Georgia Gov. Zell Miller, who died last year at age 86, also had LBD.
Turner, in the CBS interview, downplayed his diagnosis of Lewy body dementia in a way that infuriated those familiar with the disease.
“It’s a mild case of what people have as Alz-heimer’s,” Turner told Ted Koppel. “It’s similar to that. But not nearly as bad. Alzheimer’s is fatal.”
Hu, a 42-year-old neurologist at the Emory Clinic who has researched dementia for the past decade, said Turner’s interpretation is not uncommon.
“I think everybody has such a fear of Alzheimer’s disease now that when they hear it’s not Alzheimer’s disease, they feel a sense of relief,” he said.
Unfortunately, LBD is just as fatal as Alzheimer’s, and some of its most common symptoms are worse, especially the potential psychotic episodes.
Meg Girouard, a teacher in Sagamore Beach, Mass., said her father, Anthony Arena, began having hallucinations a few years ago. He’d see people and animals that weren’t there. “He woke us up at 5 a.m. and insisted the house was on fire,” she said. “He felt like those things were real.”
Then he got paranoid, followed by bouts of aggression. One time, he insisted on driving a boat, ran over a mooring ball and messed up the propeller.
“He got mad at me and basically beat me up,” she said. “That was the last straw. We had to put him in a memory care facility.”
Moving him to the facility has helped, Girouard said. Her father gets social interaction, a nutritional diet and medical supervision. He has structure and is no longer aggressive.
“If we brought him back home, he probably wouldn’t last very long,” Girouard said.
“He’d run off. He was running away from us. We’d call the police and he wouldn’t get in the car.”
Finding ways to alleviate or reverse any type of dementia has been elusive. The last time the U.S. Food and Drug Administration approved a drug to treat Alzheimer’s was 2003. LBD has its own special challenges, Hu said.
Hu compares a LBD diagnosis to the story about five blind monks feeling an elephant. Each specialist studies a different part of the disease, making it difficult to see the big picture.
“You rarely find two people with exactly the same set of symptoms,” Hu said.
While Alzheimer’s typically attacks cognitive function first, he said LBD isn’t consistent. It may start with vision issues or hallucinations. It’s not atypical for a patient of his to see multiple specialists before coming to him.
Sidny Hieronymus, 70, of Sandy Springs, Ga., said her husband, Jim — a kind, gentle man who worked in insurance — first began exhibiting a common early symptom around 2010. He’d begin “acting out” his dreams, moving his arms and legs. She had to wrap her arms around him to calm him down.
By 2014, he was told he had vertigo. Soon, he was taking frequent naps and had difficulty paying bills and preparing dinner. Doctors told him he probably had Alzheimer’s.
Over time, Jim no longer wanted to leave the house without her. With his neurological issues, his movements became jerky. He fell a lot.
“He was frustrated, but calmly frustrated,” she said. “He was also depressed. He would just sit and watch the news.”
In early 2017, Jim started having hallucinations. Soon, he couldn’t read. And later in the year, he could no longer speak clearly. Sidny took care of him as long as she could until he needed around-the-clock care.
By then, Sidny thought he had LBD, not Alzheimer’s. The Integrated Memory Care Clinic at Emory Healthcare did tests on Jim in late 2016, and by February, they confirmed her suspicions.
By the fall of 2017, she reluctantly placed her husband in a memory care facility, where he spent his final nine months. “That broke my heart,” she said. “I visited him every day, but it was like a kick in the gut. He’d be in his wheelchair, and when he saw me, he’d try to stand up and walk to me with a big smile.”
During visits, she’d sit him by the window and play him jazz music by John Coltrane off Pandora. (He was a drummer back in the day.)
“I was always striving for him to be at ease,” she said.
For better or worse, he was aware of what was going on until the end, something that is not necessarily the case with Alzheimer’s.
“It’s a terribly cruel disease, because there is that awareness,” Sidny said.
Jim died last June at age 74. They had been married 38 years.
There are only a few medicines to help people with LBD, Hu said. His patient Bowles takes just two. “We are focusing on improving general brain health whatever the cause of the disease. It’s about exercise. It’s about reducing stress. It’s about having a purpose in life. It’s about social and cognitive interactions. These in clinical trials have proven to improve brain health.”
Bowles, now six years since diagnosis, can still walk OK and speak at functions about the disease without too many complications. He eats out three or four times a week, shops at Walmart and goes to church.
But new symptoms pop up every so often. He is now super-sensitive to loud noises and wears earplugs. Sometimes, when his brain tells his legs to move forward, they go backward or to the left.
He is planning to cut back on his speaking schedule this year. It takes a lot out of him now. “Brain gets tired,” he said.
“Body, too,” said his 68-year-old wife, Judy.
Judy is his rock, but they are aware there may be a day she won’t be able to take care of him. “We have visited 10 assisted living homes just to be prepared,” he said.
As awareness of LBD grows, there is more money going into dementia research, said Rob Riesenberg, who founded the Atlanta Medical Research Center in 1982. Pharmaceutical companies hire his company to hold clinical trials on different issues such as depression, anxiety, schizophrenia and ADHD. He has eight trials related to dementia going on right now, two connected with LBD.
He said getting volunteers for LBD has been challenging.
“A volunteer has to be a giving person,” he said. “They might receive a placebo and not even receive the drug.”
Riesenberg said dementia research is still in its relative infancy.
No one has even come up with a test to identify LBD, much less a cure for it. They’ve tried nasal and gut biopsies to no avail, Hu said.
But Hu is confident that within 10 years there will be an objective way to diagnose people with different types of neurological disease.
And Bowles has one simple mission: change people's perceptions of dementia. “People tend to think about late-stage dementia,” he said. “They imagine once they’re diagnosed, it’s over. It’s not. It will take people like me living with dementia who will change the culture of dementia.”