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Most people are now familiar with Alzheimer’s disease, while few people know about Lewy Body Dementia. But that’s changing.
By Thomas Goldsmith
At a recent Raleigh workshop on Lewy Body dementia, an audience member who believes a relative has the disease asked presenter Dan Kaufer where to tell a doubting young doctor to go.
“I can think of a four-letter word,” Kaufer said to laughter, adding, “LBDA.”
Kaufer, director of the UNC Memory Disorders Program, was referring to the Lewy Body Dementia Association, a nonprofit provides that information and advocacy about this, one of the most frequent causes of dementia, which still remains relatively unknown.
But even as Kaufer announced promising new clinical trials, his response reflected frustration about a general lack of knowledge of the disease, which affects about 1.4 million people in the United States, according to the LBDA. The disorder recently garnered attention after an autopsy showed the actor and comedian Robin Williams was suffering from Lewy Body dementia before his 2014 death.[pullquote_left]The annual Raleigh event known as “Candlelight Reflections” in honor of those with dementia is scheduled for 6:30-7:30 p.m., Thursday, Nov. 3, at the N.C. State Fairgrounds, 1025 Blue Ridge Road.[/pullquote_left]The terms associated with the disease, characterized by deposits of misformed protein molecules in the brain, can make it confusing for the unfamiliar. According to the National Institutes of Health, dementia with Lewy bodies describes a form in which cognitive problems such as hallucinations or sleep problems show up within a year of a patient developing mobility problems including slowness of gait and rigidity. On the other hand, Parkinson’s disease dementia refers to a form in which the cognitive problems show up later, more than a year after such movement issues start.
Alzheimer’s North Carolina, the Raleigh-based nonprofit and advocacy organization, welcomed a standing-room-only audience of about 80 to Kaufer’s presentation at Paragon Bank on Glenwood Avenue. Questions from the audience showed that many attendees knew or suspected that someone in their care had a form of Lewy Body dementia.
“I think the key thing is to have hope, to transform the negative feelings into positive energy, to make a difference, to change the status quo,” Kaufer said.
“For the first time in a decade we are studying not one, but two potential treatments for [Dementia with Lewy Bodies.]”
Trials are underway
A trial involving the investigational drug Nelotanserin is exploring the safety and efficacy of the drug, as well as patients’ ability to tolerate it.
“This drug may affect not only neuropsychiatric disturbances, but could also have an effect on sleep,” Kaufer said.
The second study concerns RVT-101, an investigational drug that raises levels of a neurotransmitter believed to affect motor and memory functions. The drug, originally developed by GlaxoSmithKline, has also been tested extensively for Alzheimer’s disease.
“They start digging”
Lisa Levine, program director at Alzheimer’s NC, said the organization has noticed an upswing in the number of patients with Lewy Body disease who seek help.
“We have a really active support group and we’re getting more calls about it,” Levine said.
“They are very often misdiagnosed. A lot of times the family says, ‘It’s Alzheimer’s, but it’s not.’
That’s when they start digging.”
For the Research Triangle Lewy Body dementia support group, contact facilitator Loree Idol at idol.loree_at_gmail.com.
For information about walks or other events in honor of people with Alzheimer’s, visit alznc.org
Kaufer noted that correctly diagnosing and treating a patient with a Lewy Body disease often takes three steps: An initial consultation with a family doctor, a referral to a general neurologist, and another referral to a specialist in this type of disorder.
“I think there are many, many cases of LBD that are lumped into Alzheimer’s disease,” he said.
An incorrect diagnosis can cause problems in situations such as an emergency department admission if professionals treat the person with a Lewy Body disease with drugs appropriate for Alzheimer’s disease.
Treating the brain
Another attendee’s question led Kaufer to discuss his hopes for changes in the way these kinds of diseases are described.
“In his mind he has Parkinson’s,” the attendee said of her brother. “We have never used the word ‘dementia’ with him for fear of depression.”
If Kaufer could, he said, he would delete all mentions of “dementia.” A more accurate term would be “neurocognitive disorders.”
“‘Dementia’ has a lot of negative connotations,” he said. “‘Neurocognitive means, ‘I have a problem that has something to do with my brain.’
“We need to take care of the person and we need to treat the brain. Up to now we have been taking care of the person and are just starting to treat the brain.”[box style=”2″]
The basics of Lewy Body Dementia
“LBD is a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. LBD is one of the most common causes of dementia, after Alzheimer’s disease and vascular disease.
“Dementia is a severe loss of thinking abilities that interferes with a person’s capacity to perform daily activities such as household tasks, personal care, and handling finances. Dementia has many possible causes, including stroke, brain tumor, depression, and vitamin deficiency, as well as disorders such as LBD, Parkinson’s, and Alzheimer’s.”
— Alzheimer’s Disease Education and Referral Center, National Institute on Aging, National Institutes of Health[/box]