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In 2011, beloved comedian and actor Robin Williams became the catalyst for an in-depth look at Lewy body dementia. When Williams died at the age of 63, he was struggling with a wide variety of symptoms that initially appeared to point to Parkinson’s disease. But it was later revealed that he actually suffered from Lewy body dementia, a progressive form of dementia similar to Alzheimer’s.
According to the Lewy Body Dementia Association, early detection and treatment of this disease is vitally important to ensure the best possible outcome. But unfortunately, it is often misdiagnosed as Parkinson’s or other forms of dementia, which can delay the treatment necessary to improve a person’s quality of life.1
What is Lewy Body Dementia?
Lewy body dementia (LBD) is named for the protein deposits found in the nerve cells of the brain. The protein alpha synuclein, most commonly known as a-synuclein, begins to form microscopic clusters in various areas of the brain. Though these proteins are naturally occurring in the body, they can cause serious problems if they band together in the brain.
These protein deposits tend to show up in the areas of the brain that control thinking, movement, and memory. People who have Lewy bodies might also have other problems, including the plaques and tangles that are so commonly seen with Alzheimer’s disease.2
Also known as dementia with Lewy bodies, LBD is the second most common type of dementia, following Alzheimer’s.
The symptoms of Lewy body dementia can be devastating, confusing, and frightening. As with other forms of dementia, cognitive ability gets worse over time. LBD symptoms can include:
· Hallucinations. Seeing things that aren’t there can be a regular part of this disease. In most cases, those with this type of dementia will see animals or people who aren’t actually there, but they might also have hallucinations that involve smell, touch, or sound. Some of these hallucinations can be pleasant, but others might be terrifying.
· Inability to concentrate. Drowsiness, long naps, and staring off into space while not really registering what is happening around you can be hallmarks of any type of dementia, but are especially common with LBD.
· Parkinson’s-type symptoms. There might be symptoms that look very much like Parkinson’s disease, including slowed movement, rigid muscles, tremors in the body, and trouble with mobility. The “mask face” common in Parkinson’s patients is also prevalent in LBD. Due to these symptoms, LBD is often misdiagnosed as Parkinson’s in the early stages.
· Cognitive issues. Difficulty with thinking, a loss of memory, trouble understanding speech or speaking to others, and confusion are all part of LBD. These cognitive issues might come and go at first, but generally show a steady decline.
· Problems with bodily functions. LBD affects the autonomic nervous system, which controls the functions of the body. As a result, those with this type of dementia can have trouble with bladder or bowel control, blood pressure, heart rate, and even sweating. They might also experience significant drops in blood pressure when they stand up, making protection like a fall alert a necessity.
· Sleep issues. Lewy body dementia often goes hand-in-hand with REM sleep behavior disorder. Those with this disorder will act out their dreams as they sleep, going to far as to punch, kick, or yell. This can actually be dangerous for a person sleeping in the same room, which is why spouses of those with LBD might be encouraged to sleep in a separate bed.
· Depression or apathy. Depression is quite common among those with Lewy body dementia, as well as a lack of motivation to do just about anything. Though this might be a result of a diagnosis, it might also be one of the first signs of the condition.
Are You at Risk?
According to writings in Neurology by Susan Schneider Williams, Robin Williams’ widow, almost 1.5 million people have Lewy body disease right now.3 The Lewy bodies, or buildups of protein in the brain, are closely associated with Parkinson’s and Alzheimer’s – that means that those who have LBD are often misdiagnosed with one of those two conditions. Robin Williams was diagnosed with Parkinson’s – it wasn’t clear that he had LBD until after his death.
Given that a misdiagnosis is so common, the number of those who suffer from LBD could be much higher.
Those who are older than age 60 are more likely to develop any sort of dementia, including this one. Lewy body disease affects men more often than women, though scientists aren’t sure why. And those who have a family history of Parkinson’s or LBD are at greater risk than the rest of the population.
Obviously, these are factors that can’t be changed. The best you can do is stay on the lookout for the symptoms of LBD and get regular checkups with your doctor. If you notice any problems with cognitive function at all, it’s a good idea to get checked out right away.
According to the Mayo Clinic, a diagnosis of LBD occurs when at least two of the following symptoms are noted:
· Repeated visual hallucinations
· Symptoms that appear to be Parkinson’s disease
· REM sleep disorder
· Varying thinking ability and alertness
In addition to this, other symptoms support a diagnosis, including problems with the autonomic nervous system (problems with regulation blood pressure, sweating, etc.). Your doctor can also take steps to rule out other problems with treating you with medications that treat psychosis. If these medications make your situation worse, not better, you could be suffering from LBD.
Like other forms of dementia, LBD gradually worsens over time. This particular type of dementia can worsen to include deeply aggressive behavior, depression, and more severe dementia symptoms. The tremors and other symptoms that mimic Parkinson’s can also worsen, leading to an especially increased risk of falling and injury (thus making a medical alert system for seniors a necessity).
Individuals with LBD often live for another seven to eight years after symptoms begin.
The Problem with Treatments
Like other types of dementia, there is no cure for LBD. Treatment for the symptoms of LBD can be a bit tricky. Medications for Parkinson’s, such as levodopa, can help reduce the tremors and other Parkinsonian symptoms. Cholinesterase inhibitors, such as those used for Alzheimer’s, can increase the neurotransmitters in the brain. This can help slow down cognitive decline in those who are in the earliest stages.
But some other medications can easily make Lewy body dementia worse. That’s why a misdiagnosis can be so dangerous and disheartening for those who have LBD.
For instance, drugs that treat psychosis and hallucinations can often make LBD symptoms even worse. The same is true for over-the-counter sleep aids that contain diphenhydramine, antihistamines, sedatives, and those that treat urinary urgency.
As a result, many turn to lifestyle and home remedies to ease the problems that occur day-to-day for those with LBD. These can include:
· Learning not to be distressed by hallucinations. This can be easy if the hallucinations are pleasant ones; but as you might imagine, terrifying hallucinations can be almost impossible to accept.
· Making aging in place home modifications that promote safety, such as installing grab bars or non-skid flooring. This will help reduce the risk of falls for those with LBD or any other form of dementia. (An emergency alert system is also a good idea, especially one with fall detection.)
· Sticking to daily routines can be helpful for anyone, but especially for those who have trouble with their cognitive abilities.
· Getting more exercise in the hopes of staving off depression and easing cognitive decline.
· Engaging in social and mental stimulation, from going out with friends to working puzzles at home.
· Creating calming bedtime rituals can help a person fall asleep faster and stay asleep longer. This can be especially helpful for those with REM disorder that can interrupt their sleep and lead to severe fatigue.
· Using alternative medicine, such as music therapy, pet therapy, or aromatherapy, could help. Massage therapy might help ease some of the rigidity in the muscles that are the hallmarks of LBD.
It’s so important for family caregivers to provide emotional support and reassurance. Those with LBD might be frustrated, confused, angry, or downright scared about what is happening to them. Counseling and local support groups are a good idea for everyone involved.