I may have jumped to conclusions too quickly yesterday when I criticized Robin Williams’ wife’s statements about his suicide. Part of the problem was that the tabloid newspapers I took quotes from didn’t always indicate if Susan Schneider was referring to Parkinson’s disease or Lewy body dementia. I should have been more careful with my research.
To help me (and you) sort out the difference between Parkinson’s and Lewy body dementia, I’ve pasted here this week’s Q and A session about Lewy body dementia from the Fox Foundation Facebook page. I think the viewers’ comments and questions were all good, and the Fox Foundation’s responses were articulate, honest, calm and supportive. (Although typos abound.)
Question from Greg Chesser: My mom is experiencing frightening hallucinations. She thinks she sees ghosts of her brother and cat. She also sees stuff that is there, but not as we see it. a string is worm, a wire to tv or light is snake.
Any suggestions on how to calm or get her to understand it’s not there?
The Michael J. Fox Foundation for Parkinson’s Research Hallucinations (seeing things that aren’t there) and Illusions (misinterpreting things that ARE there) can be a common part of dementia, especially Lewy Body dementia. Unfortunately these can be difficulty symptoms to treat. Sometimes the medications called acetylcholinesterase inhibitors (which are medications like donepezil and rivastigmine) can help these symptoms. In certain cases, as when the hallucinations are very significant and very frightening and disturbing or causing harm to the person and others, doctors will sometimes use medications called atypical antipsychotics (or neuroleptics). In Lewy Body Dementia in particular, these have to be used cautiously as they could potentially worsen symptoms.
Of course, always try to reassure her when she sees frightening hallucinations and also make sure that her vision is checked and any visual abnormalities are corrected – if she needs glasses, for example (people with vision impairments are more likely to have worsened visual hallucinations as well).
Ava S. Butler My 64 year olf husband has levy body dementia and has frequent hallucinations. Sometimes they are very fear based. I ask him to tell me what he sees and act curious. I never try to tell him that they are not there, but I do redirect his thinking to positive thoughts, emphasizing that we are safe and secure, and that everyone is on our side.
The Michael J. Fox Foundation for Parkinson’s Research Really helpful Ava, thank you!
Ava S. Butler Sometimes when I walk towards Richard’s hallucinations, they will go away for him, and calm him down. I never tell him he is being silly or that there is nothing there. That makes him think that I am not on his side. I am always very respectful of his concerns.
Christina Guerra When caring for my husband during these episodes, I found that keeping calm, speaking with a soft voice with eye contact while redirecting him worked the majority of the time. It is so unsettling to experience as it is like a light switch which can be turned off or on in seconds.
Question from Mark Strychnine: YES! I have been diagnosed with early Parkinson;s about 2 years ago how does it differ from Lewy?
The Michael J. Fox Foundation for Parkinson’s Research Parkinson’s disease is not Lewy body dementia. Parkinson’s disease is characterized by several cardinal motor symptoms – resting tremor (shaking while you aren’t using the limb), stiffness (rigidity), slowness (bradykinesia) and walking/balance problems. You don’t have to have all four of these to be diagnosed with Parkinson’s but typically two of the first three (one being slowness) are present at diagnosis. Many people with Parkinson’s will notice some memory problems (often mild) and some will develop more severe problems (which may be eventually diagnosed as dementia). Not all dementia (even in Parkinson’s disease) is Lewy body dementia. There are many different types of dementia – Alzheimer’s, vascular, dementia associated with Parkinson’s disease, etc. Lewy Body dementia is a type of dementia (an impairment in thinking and other cognitive skills that is severe enough to interfere with everyday life) which typically includes symptoms of Parkinsonism (slowness, stiffness, tremor, walking/balance problems), visual hallucinations (seeing things that aren’t there) and fluctuating levels of attention/confusion. There is no test to diagnose this condition.
Question from Andrew Harkins: LBD sounds like it has some similarities to Alzheimer’s. What differentiates it? Or is it related in any way?
The Michael J. Fox Foundation for Parkinson’s Research Alzheimer’s and Lewy Body dementia are both types of dementia- dementia is a general term that indicates a problem with cognition or thinking – there are different diseases that can cause dementia. Alzheimer’s is the most common and Lewy Body is the second most common type. Lewy Body can have symptoms similar to Parkinson’s (slowness, stiffness and sometimes tremor/shaking) as well. It also has more prominent symptoms of visual hallucinations (seeing things that aren’t there) and oftentimes fluctuating levels of consciousness (meaning that a person might be completely oriented and with it one day and very confused the next). People who have Alzheimer’s tend to have more problems with memory and remembering things and fewer of the problems mentioned above with Lewy Body dementia. Alzheimer’s also may progress a little more slowly than Lewy Body dementia. Some of the same medications (acetylcholinesterase inhibitors) are used to treat both conditions.
Ava S. Butler My dear 64 year old husband, Richard has LBD and here’s how I see the differences.. Richard recognizes people easily. This is often not the case with Alzheimer’s from my understanding. Richard has great difficulty with communication, and his words do not come out coherently. But he is very happy to have a dialogue with those around him. It just won’t be a conversational flow that we would expect from ‘normal’ people. I believe that both people with Alzheimers and LBD have trouble carrying out tasks, and both can have significant mood swings.
The Michael J. Fox Foundation for Parkinson’s Research Ava S. Butler Thanks for sharing your experience, Ava.
Question from Martha Guenthner: Do all PD patients have Lewy bodies? Do Lewy bodies ALWAYS result in dementia? How does a PD patient know if they have Lewy bodies?
The Michael J. Fox Foundation for Parkinson’s Research All patients with Parkinson’s disease have Lewy bodies (clusters of several types of proteins, including a protein called alpha synuclein which folds abnormally and clumps up) in the cells of their brains. We think that alpha synuclein and Lewy bodies are part of the cause of Parkinson’s disease. Lewy bodies also cause Lewy body dementia. Not everyone with Parkinson’s gets Lewy body dementia though, even though they all have these Lewy bodies. That may be because the Lewy bodies are present in different areas in the brain or because a particular person has something in their genes or was exposed to something in the environment that was perhaps more protective against dementia (we are learning more about all of these things). The only way to see the Lewy bodies is to study a person’s brain at autopsy. There is no way to currently image them (or alpha synuclein).
Question from Soonie Mejia: My husband has had Parkinson’s 20+ yrs and I see changes in him but would like more details of Lewy body. Does it come on suddenly? Is there obvious changes in demeanor? Nightmares?
The Michael J. Fox Foundation for Parkinson’s Research Lewy Body Dementia typically comes on a little bit more gradually. The hallmarks of this disease are symptoms of Parkinsonism (stiffness, slowness, tremor and sometimes walking and balance problems), visual hallucinations (seeing things that aren’t there) and fluctuating levels of consciousness/alertness (which means that a person may seem to be completely coherent and normal one day or one morning and then completely out of it and confused the next day or in the afternoon). There are other symptoms that can go along with this, including a sleep disorder called REM sleep behavior disorder (in which people act out their dreams), significant problems with falling and/or passing out, significant blood pressure problems, and personality and behavior changes (which can be associated with paranoia or delusions, like strongly held false beliefs). A person doesn’t have to have all of these to be diagnosed with Lewy Body dementia. There is no test to make the diagnosis. A movement disorder specialist should be able to evaluate for and diagnose this condition based on his or her examination and the patient’s medical history and symptoms.
Holly Wolters Aungst My mother was diagnosed with Alzheimer’s although we are certain she had Lewy Body Dementia instead as she had many episodes of visual and auditory hallucinations and recognized and was able to name us until the very end of her life. I have been diagnosed with Parkinson’s. Is there a genetic link to Lewy Body Dementia?
The Michael J. Fox Foundation for Parkinson’s Research Although there are several known genetic links to Parkinson’s disease and to Alzheimer’s dementia, I am not aware of a known genetic link to Lewy body dementia specifically.
Question from Irene Konis Berry: Lewy body dementia is the cruelest of diseases. It’s very difficult to take many medications because they worsen the symptoms. Is there any treatment that improves either aspect of the disease?
The Michael J. Fox Foundation for Parkinson’s Research At the current time there is no medication that slows or stops the progression of Lewy Body dementia. There are medications which can help with the symptoms, however. Medications called acetylcholinesterase inhibitors (the same which are used for Alzheimer’s dementia, like donepezil or rivastigmine) can help with some of the memory/thinking problems and sometimes also with the hallucinations, attention, and behavior problems. Medications like melatonin and clonazepam can help with the associated sleep disorder which is called REM sleep behavior disorder. For symptoms of Parkinsonism, levodopa is often prescribed in low doses. If hallucinations or delusions (false beliefs) are very severe, frightening, disturbing or harmful, atypical antipsychotics (like quetiapine) are sometimes prescribed but this is done on an individual case-by-case basis because of the potential for worsening some of the other symptoms of Lewy Body dementia. Medications have to be prescribed very carefully so work with your doctor and pharmacist to balance side effects vs. benefits and target the most bothersome symptoms.
Question from Pat Defelice: Is lewy body part of PD? How do you know if you have it?
The Michael J. Fox Foundation for Parkinson’s Research Lewy body dementia does not occur in everyone with Parkinson’s disease. Many people with Parkinson’s disease will experience problems with thinking or memory – these can range from very mild to very severe but even if they are severe and even if they are categorized as dementia, they are not necessarily Lewy Body dementia. Dementia is a broad term which is used to categorize a wide range of symptoms that are associated with a decline in memory or other thinking skills that are severe enough to interfere with a person’s everyday activities. Just as there is no test to diagnose Parkinson’s, there is no test to diagnose Lewy Body dementia. Doctors rely on their physical examination and your medical history and symptoms to make the diagnosis of both diseases. Blood tests, imaging tests and memory tests are often done to exclude other diseases and to support the diagnosis. The main symptoms of Lewy body dementia are symptoms of Parkinson’s (stiffness, slowness, tremor, walking/balance problems), visual hallucinations (seeing things that aren’t there) and fluctuating levels of attention and alertness (confusion alternating with being coherent). There are many other symptoms that can go along with it. Each individual’s symptoms and course are different.
Question from Dennis Duffer Jr: I have memory problems that started from my strokes. I still have them along with my PD now. My wife talks about conversations or events that i have no recollection they have ever happened. Is this more dementia than just memory problems?
The Michael J. Fox Foundation for Parkinson’s Research This is a difficult one to answer. There is a type of dementia called Vascular Dementia is a term that describes a wide range of symptoms – more than just memory problems – that interfere with a person’s ability to function in everyday life. So, it is more severe than just regular “memory problems.” Since you are having memory problems of concern, talk with your doctor about your symptoms. He or she can evaluate your symptoms and may potentially do some tests to exclude other conditions that could cause memory problems (like thyroid problems, vitamin deficiencies or electrolyte abnormalities) and may order detailed memory testing. Of note, there are also memory and thinking problems that can go along with Parkinson’s disease. So, potentially you could have a mix of memory/thinking problems that are going along with both the strokes and the Parkinson’s. Talk with your doctor about your situation and what can be done to figure it out and treat your symptoms.
Question from Mike Snyder: In the thick of dementia related to parkinsons. My dad is on exelon patch and a cocktail of others. Does Lewy bodies increase combativeness? Specific tests recommended?
The Michael J. Fox Foundation for Parkinson’s Research Lewy Body dementia can cause personality and behavioral changes including aggressiveness and combativeness. There are no specific tests that can make the diagnosis of Lewy Body dementia although there are tests that can help support the diagnosis and there are tests that will exclude other diagnosis that can cause memory problems or other symptoms of Lewy body dementia.
Question from Bruce Ballard: If you are diagnosed with Lewy body dementia, is your future as dire as Robin Williams’ wife is proclaiming in her interviews this week about the actor’s death? What is the life expectancy of someone with this diagnosis? Are there things the individual can do to slow the disease’s progression, such as lots of physical exercise? (My understanding is that many people stave off Parkinson’s symptoms with strenuous exercise. For example, see your Oct 31 post about Jimmy Choi, the marathon runner. In the Runner’s World article you link to, Jimmy talks about how many of his symptoms dissipated after he took up long distance running.) Thanks!
The Michael J. Fox Foundation for Parkinson’s Research Although people will experience different symptoms and progress at different rates, Lewy Body dementia can unfortunately progress rather quickly – over about five to eight years. There are no therapies currently available to slow or stop the progression of disease, although there are medications that can treat the symptoms. Research has shown that healthy balanced diet, regular exercise, social interaction and cognitive/thinking/memory exercises (reading, crossword puzzles, etc) are good for possibly preventing memory problems. A person with this diagnosis should try as much as possible to stay engaged in all of these activities and in activities he or she enjoys, of course.
Question from Heidi Porter: I have Parkinson’s my mother has her mother n grand mother had Altheimers my worry is my memory and reasonable thinking is diminishing can’t help but be concerned what tests are out there???
The Michael J. Fox Foundation for Parkinson’s Research Unfortunately at the current time there are no tests that can make the diagnosis of Parkinson’s or Alzheimer’s. Doctors can do tests to exclude other diseases that can look like these but there are no tests that can make these diagnoses. There are memory tests your doctor can order as well that can determine if there is a problem with your thinking and/or memory and what potentially could be done to help with that. Start with your primary doctor – express your concerns and he or she may start with some basic testing and refer you to a memory specialist.
