Lewy Body Disease: Professor Ian McKeith Symptoms,Treatment Research

people talk about the core symptoms of dementia with Lewy bodies and there are three of these the first is the presence of visual hallucinations in other words people see three-dimensional colorful vivid real looking images and usually if people and sometimes of animate objects the second core feature of dementia with Lewy bodies is fluctuation by which we mean that any of the symptoms can vary quite markedly from one occasion to the next sometimes even from one minute to the next and fluctuation can affect things such as orientation knowing what day and date and time and place a person's in so sometimes a person might be very accurate about those issues but then later on might be quite confused and need a lot of reassurance and explanation the third of the core features of dementia with Lewy bodies is parkinsonism I think most people are familiar with Parkinson's disease which causes tremor or or shakiness slowness particularly in walking and also stiffness of the limbs in dementia with Lewy bodies we see some of those features of parkinsonism in about three-quarters of cases and it can be the most disabling symptom the core features of dementia with Lewy bodies are very useful to know about because if they're present especially if two or more are present then the patient is very likely to have dementia with Lewy bodies the limitation is that many patients with dementia with Lewy bodies don't have many or even don't have any of the core features in order to overcome this we've made an additional list of what we call suggestive features the suggestive features of dementia with Lewy bodies are three the first suggestive feature is sensitive to neuroleptic medications neuroleptic medications are essentially tranquilizers that are commonly given to people with dementia a wide range of conditions to calm them them research has shown us that neuroleptics which are major tranquilizing drugs are particularly dangerous for people with dementia with Lewy bodies if they're given them then there's a high likelihood 50% or more that people will have very severe adverse reactions in which they become much more parkinsonian they become stiff they can't swallow they can't eat they can't move about and because a lot of these are older people they then very quickly develop the complications of immobility and in fact the death rate is 2 or 3 times increased following taking these kind of drugs compared with if they weren't given it's a major important that people understand that neuroleptics should not be given to people with dementia with Lewy bodies unless and the specialized supervision and in conditions where other drug treatments have failed then occasionally it might be necessary the second of the suggestive features of dementia Lewy bodies is a condition called REM sleep behavior disorder REM stands for rapid eye movement I think most people know that during the night sleep they have periods in which they dream and in those periods the body becomes paralyzed so that essentially they don't act out their dreams they don't move around and wave the limbs about and shout in REM sleep behavior disorder the body doesn't become paralyzed and patients do wave their arms about shanks and often injure the person who might be sharing the bed with them REM sleep behavior disorder is commonly found in the 1020 years before somebody presents with other symptoms of dementia with Lewy bodies so it's a very useful signpost or early indicator the third of the suggestive features for dementia with Lewy bodies is the result of a particular type of brain imaging investigation we've realized that a substantial number of patients don't have the typical clinical picture and therefore we're going to have to resort to some kind of biological test to make for diagnosis the best biological test which we have currently is brain imaging in particular a type of brain imaging where we measure what's called the dopamine transporter which is a neurotransmitter in the brain which is reduced in dementia with Lewy bodies but which is normal in other kinds of dementia like Alzheimer's disease and which is also normal in healthy elderly people you can see if you look at these scans that the scan from a person with Alzheimer's disease is very obviously similar to the the normal control whereas this image which is from somebody with dementia with Lewy bodies is very obviously abnormal the dopamine transporter imaging test is able to accurately diagnose patients as about a level of 85 to 90 percent which is really much better than most clinicians can do in order to improve the practice in this area we need to diagnose dementia with Lewy bodies more often particularly in the cases that don't look absolutely typical the way that we can do this is for doctors to have a higher index of suspicion and carry out appropriate investigations in people who have a hint of dementia with Lewy bodies and whom they think yes this would be a possibility of a diagnosis so for example a person with early dementia who's experiencing some mild visual hallucinations should probably be sent fairly quickly to have appropriate brain imaging such as a dopamine transporter scan which would really increase the level of certainty of diagnosis quite substantially dementia with Lewy bodies is essentially a specialist diagnosis as is the diagnosis of any dementia subtype and the greatest asset that a doctor has in making a diagnosis of dementia with Lewy bodies is really clinically experienced and having seen the disorder before it's a process of pattern recognition but having said that there are certain tests which can be particularly helpful for example simple bedside tests like clock drawing can be very useful and there are scales that have been devised recently for measuring symptoms like cognitive fluctuation these scales involve asking a relative a short number of questions about the person's performance from one part of the day to another or about the person's sleep pattern some tests which are routinely carried out during the assessment of a person with dementia can be particularly informative if the doctor knows how to use the test for example most people with dementia get a CT brain scan which is done usually to exclude strokes space-occupying lesion or other abnormalities inside the skull in dementia with Lewy bodies the CT scan will often show preservation of the hippocampus and medial temporal lobes which are atrophied or shrunken in Alzheimer's disease so even routinely done tests have some diagnostic value if if used properly the diagnosis of dementia with Lewy bodies is of itself quite traumatic usually the person receiving the diagnosis and their family hasn't heard of this condition before and there's a considerable amount of Education explanation that has to be given more than perhaps would have to be given with something like Alzheimer's disease which most people will have heard of prior to them going to to the hospital the next stage in managing dementia with Lewy bodies is identifying exactly which problems are significant to the person suffering and also to the family so for example a person may have hallucinations which are troublesome but not as troublesome as the fact that they have a severe sleep disturbance and so the treatment priority in that case will be to treat the sleep disturbance first we do of course now have the anti Alzheimer's disease drugs such as telepathy reverse stigma in galanthamine which have been shown in clinical trials to be more effective in dementia with Lewy bodies than they are in Alzheimer's disease for which they were developed one of the most important things to understand about dementia with Lewy bodies is that although it is a progressive condition we can actually make very substantial improvements for patients with treatment the best treatment that we currently have available is the range of drugs that was originally developed for Alzheimer's disease such as the Napa cell reverse segment or galanthamine these drugs which can have helpful effects in Alzheimer's disease can sometimes have quite dramatic effects in dementia with Lewy bodies so for example a patient may lose the hallucinations may be transformed from being drowsy apathetic confused to being alert and relatively lucid and may also to have just a global improvement in the quality of life and we know from trials that these effects can last one two or even more years the medical treatment of dementia with Lewy bodies is complicated because it usually contains two or three elements at least and if the person has significant parkinsonism they may require treatment for that with drugs like levodopa but of course these drugs have to be titrated carefully because they can produce side effects such as increased confusion that type of treatment would often be given by a movement disorder specialist another type of drug treatment that the person with dementia Lewy bodies might get would be a cholinesterase inhibitor as developed originally for the treatment of Alzheimer's disease these drugs can be very effective for the mental symptoms and reducing or even banishing the visual hallucinations and these drugs are often given by a specialist in elevated circuitry and treatment might be given for the REM sleep behavior disorder which sometimes responds extremely well to a low dose of a sedative drug called clonazepam given at bedtime and of course most of these patients because they are elderly also have other physical conditions for which they're receiving additional medications and one has to be very careful that the medications are compatible with one another dementia with Lewy bodies effects an older population as the most dementing disorders so most patients at IC would be over 65 and in fact the majority would be over 80 but that doesn't mean to say that there aren't occasional people who develop this as early as their 40s or 50s on average people live for about eight years following a diagnosis of dementia with Lewy bodies but this can range from as little as two to as much as 20 or even more dementia with Lewy bodies is part of a family of conditions which are related to an underlying process called Lewy body disease if you develop Lewy body disease when you only 50s and 60s the chances are you'll present with Parkinson's disease in other words it'll be predominantly a movement disorder if you develop Lewy body disease in your 70s and 80s the disease affects a different part of your brain and it will present as dementia with Lewy bodies so the the type of symptoms that you have depend upon the age at which you're affected there's currently a very active interest in researching dementia with Lewy bodies but that hasn't always been the case if you look back even 15 or 20 years ago there was virtually nothing published in this field and if you look in the last 2 or 3 years there are several hundred papers a year being published which testifies the number of people who are now becoming involved in it and most of the research in dementia with Lewy bodies has been about describing the condition describing the clinical features and the way that patients present and that's led us to a situation where we now have standard diagnostic criteria which can be used by clinicians or researchers across the whole of the world and indeed they are and because we have standard criteria for diagnosing patients we're in the position that we can do clinical trials and the clinical trials can be really quite exact about the kind of patients that we are including there's also a wealth of biologically based research trying to understand the nature of the Lewy body what what is a Lewy body what the Lewy bodies do in the brain we used to think that Lewy bodies were toxic to nerve cells that there were abnormal proteins which killed nerve cells off in the last two or three years we've began to understand that Lewy bodies are probably an attempt by nerve cells in the brain to protect themselves or they're a dustbin if you like in which abnormal proteins get put as a place of safety the research efforts therefore moved to trying to learn which the toxic the bad proteins that are damaging nerve cells and we're making significant progress even within the last year or two researchers have identified changes at the very periphery of nerve cells very small aggregates small collections of an abnormal protein called alpha synuclein and this is a potential treatment target if we can understand how these small aggregates of abnormal proteins occur then we're in a position of course to to stop it happening and probably to reverse the disease process the research program in dementia with Lewy bodies has been operating in Newcastle since the late 1980s Newcastle was one of the first places where dementia with Lewy bodies was recognized as a common form of dementia and older people and since then we've collected cohorts groups of patients with the condition and we followed them through the lifetime doing a lot of biological tests brain imaging memory tests and things of that kind and after the patient's died we've obtained consent for post-mortem examination of the brain so we've been able to correlate brain changes with the symptoms the patient's had during their life and it's that kind of research which is now called clinical translational research which leads to developments in treatment one strand of our research in Newcastle has been to pursue the risk factors for developing dementia with Lewy bodies particularly the genetic risk factors although it's not an inherited disorder we do know that some genes confer increased risk we have a PhD student working on this genetic risk program currently who's funded by the Lewy body Society and Martinez particular interest is looking at a gene called glucose ElBaradei's gene which we know is associated with dlb and related disorders although genetically determined cases of dementia with Lewy bodies or lead any disease and are rare they often give you information about mechanisms by which the disorder can can occur so if we can unravel and understand the mechanism from an abnormal a rare case we might be able to generalize that treatment to treat every case if you ask people with dementia what aspects of the condition they want researching that nearly always say that they would like us to understand the cause in order to generate a cure and that is the kind of research program which we have developed a Newcastle in which we intend to to sustain but that does require a commitment from patients and the families on one side who are willing to come up and have exhaustive testing and investigation and also the ability to to fund the research for many years until appears and dies and we're able then to examine brain tissue because that correlation between brain and clinical symptoms is actually the key to unlocking these diseases we really have only understood the importance of dementia with Lewy bodies for less than 20 years and already we've moved to the point that we are able to diagnose it in substantial number of cases with a high degree of accuracy we beginning to understand the mechanisms that cause the disease which will allow us to generate new treatments so we've moved very quickly compared with a lot of other diseases from first recognition to being on the point of reasonable understanding and a reasonable prospect of cure and significant treatment what we need to do next is to establish some large scale clinical trials and try out the new treatment setting up large clinical trials and dementia with Lewy bodies is not an easy challenge because there's still a relatively low awareness of this diagnosis in the community I mean the general community and still the medical community and there's still a relatively small pool of skills of people who can carry out this kind of research a priority for the Lewy bodies society and for all organizations interested in Lewy body disease is to increase awareness of the condition and to increase the skill level in diagnosing and doing clinical studies the Lewy body society is the only charity dedicated to supporting dementia with Lewy bodies in the UK currently and it's been instrumental in developing information which is available for carers and also for professionals caring for people with dementia it also has started raising funds to support research students like Marlena the PhD student who works in a laboratories in Newcastle I find the information that the lower body society offers to patients and carers through the website to be a particularly useful thing in the clinic so that after we've finished the diagnosis and the discussion about the diagnosis I will always give them the website address and recommend that they go there to look for additional information which they can do at their leisure and then they can contact the society with additional questions or requests for information for more information please visit our website you


  1. Been fighting with this stupid illness with my dad for 3 years, its ugly. My main suspect is oxidative stress and hormonal disbalance. Citocholine,phophatidil serine,magnesium,vitamin C and rivastigime do hold him in so-so condition.Its crazy cause some days he is completly normal

  2. My mum has had this and really was not picked up by the doctor for years she hallulsonated and had all apart from Parkinson tremor) we we're just told she was a bit confused …she was treated with gabapentin…. which helped with the nerve pain she had .,she is now 20years later (she is 90) in the end stage of Dementia in a nursing home bed ridden but she is very peaceful doesn't know who we are but .has no drugs now but I think looking back she was never treated for lewy bodys…I hope people now get better.. diagnosis…

  3. My mom has this. She has struggled with it for 2 years. It is hard to diagnose. First they said Parkingson's. She hasn't gotten better.

  4. My father was healthy never on anything but rolaids daily until he was 78 yrs old. They stopped making rolaids so he started using tums.. (rolaids contains magnesium).. he started hallucinating and was diagnosed with lewy body syndrome dementia. He slid down hill within 4 years and parted away. I would love a study on magnesium and this disease!!!

  5. Excellent video on this subject. My husband was diagnosed with Lewy Body Dementia and I have been researching this exhaustively to help him and help us understand this disease. Thank you so much.

  6. My dad has Lewy Body Dementia and one of the newest drugs for memory Namzaric has helped tremendously.

  7. My grandmother has just been diagnosed…. It is so hard to see her struggle to figure out what is a dream or reality… Thinking one of my family members is going to hurt her. I wish I could take this away from her. Brakes my heart.

  8. My husband passed on a week ago from this disease and was a body donor. His symptoms and behavior were very classic to what you have described. Thank you for your dedication to finding an understanding and cure for this devastating disease.

  9. Hi Dr. Mckeith. I came across your very interesting video this evening, after having watched the 52 You-Tube Episodes (so far) of a son, Joey, interacting with his mother who has Lewy Body Dementia. I thought you and others in your lab may find the episodes very interesting. Perhaps a partnership or at a minimum communication between you and Joey could result.

    Here's the link to the first episode that will take you to the rest of the episodes.


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