8 Facts about Lewy Body Dementia

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Lewy Body dementia (LBD) is a very serious condition that is often overshadowed by its more well-known cousin, Alzheimer's disease.

Facts About Lewy Body Dementia

  1. It affects millions: At last count, somewhere around 1.4 million Americans are affected by LBD, the second most common form of dementia (behind Alzheimer's disease).
  2. It's not Alzheimer's: One of the typical misconceptions about Alzheimer's disease is that it is the same thing as dementia. However, Alzheimer's is but one form of dementia, the term used to describe an impaired mental state that is caused or accompanied by any of the following: impaired memory, issues with decision making, trouble with problem solving and difficulty when trying to learn new skills. There are crucial differences between dementia that is caused by Alzheimer's disease and LBD. For one thing, people with LBD experience unpredictable changes in their cognition, regardless of the time of day, whereas people with Alzheimer's tend to have more trouble when the sun goes down—a symptom referred to as "sundowning." Those with LBD also tend to have more hallucinations and movement issues, whereas the hallmarks of Alzheimer's are memory loss and trouble performing familiar tasks.
  3. It's difficult to diagnose: As with Alzheimer's, LBD can only be conclusively diagnosed by doing a biopsy on an individual's brain after they have died. When diagnosing living patients, doctors consider the person's symptoms, interview their family members, perform physical and mental evaluations, and conduct blood tests and brain imaging tests (MRI, CT). The main indicator of LBD is, of course, dementia. Other symptoms of LBD include: problems with depth perception, hallucinations (often visual), delusions, paranoia, Parkinsonism (body stiffness, tremors, trouble walking), and physical issues such as heart rate and blood pressure fluctuations, constipation, fainting spells. To be diagnosed with LBD, an individual must have dementia as well as several of the aforementioned symptoms.
  4. It can affect medications: An accurate, timely diagnosis of LBD is essential to avoiding dangerous medication reactions. Many drugs prescribed to people with Alzheimer's disease and Parkinson's disease—especially anti-psychotics—can have a dangerous effect on people with LBD. Neuroleptic Malignant Syndrome is a neurological disorder brought on by a negative reaction to neuroleptic or anti-psychotic medications that often occurs in people with LBD. Individuals who develop Neuroleptic Malignant Syndrome can experience muscular rigidity, high fever, variable blood pressure and severe sweating.
  5. It's similar to Parkinson's: People with LBD often exhibit the same symptoms as those with Parkinson's disease dementia (PDD). While the two conditions start off differently, their biological underpinnings are closely related, and people with Parkinson's disease can be diagnosed with either condition. The primary factor that physicians use to distinguish between these LBD and PDD is when the cognitive symptoms first began. People who start to develop dementia within a year of their Parkinson's diagnosis are thought to have LBD, while those whose dementia symptoms start beyond the one year mark are thought to have PDD.
  6. It can impact sleep: Sleep issues and dementia often go hand-in-hand, but there's a specific sleep condition that appears to disproportionately affect people with LBD. Studies indicate that as many as two-thirds of LBD patients grapple with REM Sleep Behavior Disorder (RBD), an ailment that causes them to move, speak and gesture during the REM (rapid-eye movement) stage of sleep.
  7. It's unpredictable: One of the biggest challenges facing those with LBD and their families is the fact that symptoms of the disease tend to wax and wane erratically. Periods of mental fog, aggressive behavior, movement issues and vivid hallucinations can last seconds, minutes, hours or days. The fluctuations in symptoms can be caused by underlying infections, medications or a general worsening of the disease. Because of this, it can be nearly impossible to determine how far the LBD has progressed in a given individual. However, if the causal factor is capable of being fixed, then the person with LBD can often return to the level of functioning they were experiencing before their unexpected decline.
  8. It has no cure: There is currently no way to cure or halt the progression of LBD. Those who've been diagnosed with the condition may be prescribed drugs to deal with certain symptoms. For instance, cognitive issues may be addressed with cholinesterase inhibitors, a type of medication that promotes brain cell function by affecting the neurotransmitter acetylcholine. For those with RBD, treatment with clonazepam or melatonin might help them sleep more soundly. And levodopa may be used to mitigate the effects of severe Parkinsonism. Occupational, speech and physical therapy are the most common non-pharmaceutical approaches to helping people with LBD manage their condition and function better during day-to-day life.
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25 Comments

This is a really good summary of LBD. My 87 year old father passed away last week, after years of living with LBD. He was diagnosed in 2009, however, we believe he had many of the classic symptoms including REM sleep disorder, for several years prior to his diagnosis. It was a surprise to us at that time to discover how little was known about Lewy Body Dementia, even among some of the health care workers we met, and as this article points out, certain medications such as Haldol can have serious negative affects upon individuals with LBD. We were fortunate that my dad was able to participate in a research study at a leading academic hospital and we set about learning all we could about this disease. My father also had long-term care insurance and we were able to keep him at home with good home health care and, at the end of his life, with hospice. This disease is emotionally heartbreaking and financially devastating for the families of people with LBD. Please refer to the LBDA website, www.lbda.org to learn more about lewy body dementia and thank you again for this article.
Great info here. Hubby has LBD and we do not really know how long he has had it. He had some symptoms, looking back years, but was being treated for depression all those years. His walking rigidity and shuffle was attributed to diabetes. Spent much time going to Dr's and not one single one diagnosed this until earlier this year and it has all been downhill since. He lost all ability to walk, is different mentally every single day, it is hard, it has financially drained us and I do the best I can with this. I take offense to the sticking him in nursing home is cop out post. No, it is not a cop out.. I cannot lift him nor move him,nor handle the outbursts he has every so often where he is violent. I had to "stick" him in nursing home and already feel extreme guilt over it every single day and am super sensitive to any comments about this. I know everyone is totally entitled to their comments and opinions but wanted to point out please, please, do not judge anyone who has loved one in nursing home. I am going through my own h*ll over this decision even though he is doing quite well there, no more falls, no more not knowing what to do with outbursts, etc. He is treated very well, as am I at the facility. I go every day almost and have dinner with him and friends I have made there. I come home to empty home and the guilt starts all over.
Betty G. Please drop the guilt. It is almost impossible to take care of a person with this condition at home especially a woman. It's difficult for CNAs to care and keep clean & dressed and fed in a facility but they have a system and multi care takers and activities people who are trained in body mechanics and have machines to lift and transfer residents who otherwise could not be moved manually. Most women who try to do the care taking at home wind up in nursing homes because they got hurt trying to move a loved one and care for them at home. Not to mention phone calls at 2:30 AM from police saying he's driving on a major highway at 20 miles an hour 100 miles away from home if the afflicted can still walk, How about the combative periods it's almost impossible for a woman to deal with.

Nursing homes provide a structured safe environment. with activities meals and incontinent care. AM care dressing, hygiene help, beauty salon, barber shops 8 AM breakfast in room or dining room, activities or entertainment after lunch and dinner and more activities after super In fact some residents at nursing homes who have cognitive abilities say they didn't have this much company and entertainment in their entire lives. Please be assured that you did the right thing.