founder Ted Turner announced on “CBS Sunday Morning” in
September that he had Lewy body dementia, the general reaction
was, “What’s Lewy body dementia?”
Unlike the most
common type of dementia, Alzheimer’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
She said many
symptoms resemble Parkinson’s, and the disease often
includes persistent and recurring hallucinations.
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
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
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.”
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
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.
mild case of what people have as Alzheimer’s,” Turner told
Ted Koppel. “It’s similar to that. But not nearly as bad.
Alzheimer’s is fatal.”
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
LBD is just as fatal as Alzheimer’s, and some of its most
common symptoms are worse, especially the potential psychotic
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.
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
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.
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.
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
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
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
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.
terribly cruel disease, because there is that awareness,”
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
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
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
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.
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.”
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
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.”