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As many as 1.4 million people suffer from Lewy Body Dementia in the United States, but this disease can be elusive and difficult to diagnose. Lewy Body Dementia (LBD) differs from other types of progressive dementia, and its symptoms can also mimic other diseases and disorders. LBD is most common in adults over the age of 50, so it’s important to be aware of the symptoms and watch for them as you or your loved ones age. Here, we share five early signs of LBD that every adult should be aware of.
Hallucinations or Delusions of Reality
Unlike Alzheimer’s disease, individuals in the early stages of Lewy Body Dementia may exhibit cognitive changes such as hallucinations or distortions of reality. In general, hallucinations caused by LBD are vivid and usually visual, rather than auditory. LBD differs from other forms of dementia in that most early-stage cases do not involve memory loss.
Cognitive Fluctuations
Individuals with LBD often exhibit cognitive fluctuations in the early stages of the disease. These fluctuations may include changes in wakefulness or alertness. Those affected by LBD may also feel unusually tired despite getting a full night’s rest or have difficulty concentrating on routine tasks.
Changes in Movement
Subtle changes in movement are to be expected with age, but it’s crucial to look out for symptoms that are similar to Parkinson’s disease. These warning signs often include a reduction in coordination, balance problems and frequent falls, or a change in handwriting. These symptoms can be tricky to spot and are often associated with other diseases. Moreover, those with LBD usually don’t experience significant changes in movement until later stages.
Behavioral Shifts
Lewy Body Dementia causes changes in the nervous system, which can lead to shifts in behavior and mood. If you or a loved one usually have a sunny disposition or mild temperament but have recently developed depression, anxiety, or paranoia, it may be wise to consult with a healthcare professional. This is especially important if changes in mood are accompanied by any other early signs of LBD.
Sleep Problems
Sleep disorders are a common symptom of LBD, but these signs may be difficult to detect and are often overlooked. Sleep problems that may arise with the onset of LBD include vivid dreaming, sleepwalking or talking during the night, unusual daytime drowsiness, and insomnia. Restless leg syndrome can also be an early sign of LBD, so be sure to take note if you or a loved one begins to exhibit signs of restless leg syndrome in conjunction with any of the above symptoms.
If you suspect that you or a family member may have Lewy Body Dementia, it’s essential to have access to information and support. To learn more about LBD and find information regarding professional help in your area, please visit us online at lewybodyresourcecenter.org. Our helpline is available 12 hours a day, so feel free to give us a call or reach out via email.
This is a very informative article on the different early signs of Lewy Body Dementia one should look out for. Thank you for posting this.
Thank you for writing and your positive feedback.
Very interesting
My father had an unenthusiastic neurologist whose attitude was that there wasn’t much that could be done, whatever kind of dementia Pops suffered from. Apparently this isn’t entirely the case, but the attitude did not help us one bit. We arrived at the diagnosis ourselves after a friend described her father’s Lewy Body symptoms that were identical to my father’s. The medical community didn’t argue with us as it was far too obvious. My poor father! His last year was nothing short of a nightmare. An earlier prescription for an anti-psychotic as a muscle relaxant during a separate health event only appeared to exacerbate the Lewy Body symptoms. Now we know that Lewy Body does not mix well with medication. My father proved to be extremely sensitive. His downward spiral was dramatic and terrifying. Who knows what could have been mitigated with an earlier diagnosis.
Thank you for writing, Kymberly. I am so sorry to hear what your father went through. Unfortunately, your story is not unusual. This is why we work everyday to bring as much awareness to LBD as we can. I can see a difference since I started becoming involved more than 15 years ago. Let’s hope we will continue to see major strives.
thanks for enlightening me about this kind of sickness and understanding the early signs of LBd. And thanks for providing us the link to your support group
Thank you for writing, Lee.
Thank you for writing Lee. And please feel free to write or call our Helpline any time at 833-LBD-LINE.
Hi, I’ve been displaying symptoms of this sickness since I was a kid. The bad posture, the sleepwalking, the muscle pains, falling asleep randomly, problems focusing….just now finding out about Leweys. Is it possible to get this early on in life but then deteriorate quickly once I hit older age? I’m 38 now. This is making me slightly concerned at this point.
Dear Mark,
There could be many different reasons for the symptoms you mention. Please be sure to see a neurologist as they would know best.
Unfortunately my wife was diagnosed with Alzheimer”s and given several anti psychotic drugs which really sent her downhill fast. We fired that neurologist and hired another who took her off all these medications. She is doing fantastic since we took her off but she still sleeps up to 16 hours a day and does have vivid dreams and sometimes does speak and act out during the night. Other than that she is great. I was hoping that she does not have LBD but I’m thinking she does.
Dear Roland,
Please check with your new neurologist about your question re LBD. Our strong suggestion is to mention every single symptom that your wife is showing. For example, does she have any signs of REM sleep disorder (thrashing in her sleep, nightmares, or speaking in her sleep)? Does she have Parkinson’s symptoms (rigidity in her arms and legs as well as slowness of movement)? Does she have fluctuations of cognition? This last one helps distinguish LBD from other symptoms. Does she have trouble with depth perception (not being able to judge how far something is from her)?
We’re very glad to hear you found the right neurologist and that she is doing so much better.
Please know we have a helpline 7 days a week at 516-218-2026.
My concern is if I need to be tested. My Grandparents, my mother, my aunt and uncles had it. If I am tested and find out I have LBD. There is nothing I can do about it. Then what? Everyone around me will just be counting down the days.
Hi Brent,
It is EXTREMELY unusual for family members to all have had Lewy Body Dementia. There are no definitive tests for LBD. If you feel like you have any of the symptoms, you could certainly see a neurologist. There are medications that can help you to live more comfortably. Please note that it is not considered a genetic disease.
Hello, My mom is currently in the hospital up on a cardiac floor. I originally took her in to see her PCP due to a sudden onset of altered mental status, she exhibited behavior of one would expect if they had a UTI or even a low blood sugar, but when we arrived they did the basic 12 lead EKG and she was in A FIB RVR which then became the priority. During her ER stay, they ran all the tests like a UA, CBC blood panel an MRI and CT, which all came back normal. my mom has been in the hospital now for 72 hrs and she is becoming delusional and hallucinating. She has yet to have a spinal tap but besides that, I’m concerned that this maybe LBD. what do you think?????
Beth, thank you for writing. Has your Mom shown other signs of LBD before this hospital stay. I’m asking that question because it’s not unusual for older people who are in a setting that is unfamiliar like a hospital–in addition to a possible UTI–to be delusional. It may also be due to a medication she was given. My first question is: Does she need to be in the hospital in this current climate? Is she stable otherwise? What is the diagnosis? Please also call our helpline at 516-218-2026 if you want some more information on LBD and we can discuss her symptoms in more detail. We’re available starting at 8am EST. Where are you located?
Hi my name is Pamela and I would like to know at what age can dementia began? My Mom, whom has passed, was diagnosed with dementia but was suspected of ‘lewy body’. She refused to take any medicine or test to see. Prior to her death she finally told the doctor she has been suffering hallucinations, auditory disturbances, falls, unusual movements with her fingers (like tapping) and forgetfulness. I also have a cousin who is 72 who is being treated for dementia as well. Also I have been diagnosed with a rare disorder of SSCD (Superior Semicircular Canal Dehysience) I am 60 and having a few memory issues. Just curious if the 2 are connected? Can Lewy Body run in families?
Thank you for your time and input.
Dear Pamela,
Though we have communicated offline, I am posting the response here:
I have not heard of SSCD having any connection to LBD. To be clear, I am not a physician. I have been leading LBD support groups for almost 15 years and never heard that mentioned. LBD is not considered hereditary but I have heard a few instances of it in same families.
Pamela, please be sure to see a neurologist to speak about your questions. If you need help in finding one, please let us know.
I certainly hope you feel the very best you can.
My MOTHER in law is 82 and having hallucinations. No memory loss yet. Brain scan showed no changes. Could it be lewy body dementia?
Hi Mary,
Hallucinations could possibly be side effects from another condition or medication. Does she have other symptoms? Have you taken her to a neurologist?
Hi. My name is Dawn and I’m worried about my sister. She is 74 and she has been suffering physical nightmares for some time and also has very shaky hands. Both symptoms have got much worse recently. She has made an appointment to see her doctor but she thinks she is suffering from post traumatic stress due to a very unhappy marital period her life (the vivid nightmares always seem to include her ex husband) but this was many years ago. Could this be the problem or could it be signs of Lewy body?
Thank you.
Hi Dawn,
It is very difficult to say and only a neurologist would be able to possibly diagnose her. Please have her make an appointment with a Movement Disorder Neurologist. Try to find one at a large medical center near her. If you need help, please call our Helpline at 516-218-2026 and we will be glad to guide you.
Hello. My husband has uncontrollable leg movements when he’s relaxed in the evening. This has been going on for around 3 years. Also he recently, after wearing hearing aids for around 3 years which never worked right, was diagnosed with 90% hearing loss. He’s also been showing signs of dementia, but still is good at driving and his check book. My question is, is there a connection between hearing loss and dementia? He also has memory loss. Thank you. Candace Frey
Dear Candice,
Our organization handles all inquiries for Lewy Body Dementia specifically. My suggestion is to speak to a neurologist or a geriatrician regarding your question as I believe they will be able to answer it best.
My husbands mother died at 74 years old from L.b.d. my husband is 55 years old and is worried he’ll get it too, hes say he has been really 4 get full and I’ve noticed that it takes him more time to answer a simple question
Lisa, it is said that LBD generally is not inherited, although there is a small percentage of people who do inherit it. There are many other factors that can contribute to forgetfulness. It is best to start with a physical exam. If all shows well, you may want to consider your husband seeing a neurologist or a neuropsychologist who can do some early testing.
I was interested in signs of LBD , My dear friend has been showing all these symptoms, is now in hospital and has been suffering with hallucinations for months now , have been concerned about her after another fall , I have just lost my sister-in-law to this form
of dementia so I feel I was on the right track with my friend ,awaiting the diagnoses .
Hi Jimmy,
I’m sorry to hear about the loss of your sister and now of your friend being hospitalized. Here is a link on our website showing what the symptoms of LBD are. Please know you can also call our Helpline seven days a week from 8am to 8pm EST at 833-LBD-LINE.
https://lewybodyresourcecenter.org/what-is-lbd/symptoms/
Rich resource here, thank you so much! My sister, 89, has LBD w/ other complications. She’s always been very physically active, which I feel may have contributed to her longevity. Now, w/ balance issues particularly, she resists leaving her bed; visitors to her res. care site are restricted due to C-19, so she’s often “holed-up” in her room.
However, when she’s willing to speak on phone she engages well, retains names of family members not seen in many years & asks cogent questions. I encourage her, send books we discuss, remind her she’s held in great love. Her life’s been terrifically tragic, by any measure. She’s lost so much, I feel she assigns deprivation to punishment (spiritually). I hope to inject light to her remaining years & will appreciate suggestions. Thanks very much!
Dear K. Adams,
It’s beautiful to hear how much you’ve been keeping your sister engaged. Are you able to meet via zoom or by phone at all? Music helps a lot so I would encourage that as well. Please know that we have support groups on zoom if you would like to join. We would be happy to have you join us if that feels right for you.
Best, Norma
I so appreciate coming across this site and all the information it has provided. My brother is 69 years old, in the past he did quite a bit of construction work in our homes and for a living. The past couple of years he has become delusional, he sees cars following him, he even says someone looked only at him while he was with others. He smells odors no one else smells, and his sleeping is another problem, he sleeps half of the day. He discusses politics in detail. I knew something was wrong, had him seen by a Psychologist, he refused to take the medication. So glad for this information I will speak to his PCP. Thank you.
Dear Yvette – I’m glad all of the information on our site was helpful to you. I am glad you will be arranging a visit with your brother’s doctor. Please know that seeing a neurologist is highly recommended.
Wow this is great. My Brother in law was diagnosed with LBD 4 years ago now. He has no medication as he did not go back to the Neurologist after one year after being diagnosed. He has hallucinations and hearing is not good and has recently become so very quiet. What is the life expectancy of LBD ?
Hello Anita,
It is very hard to determine life expectancy. Everyone with LBD progresses differently depending on age, other physical ailments, and the disease itself. Some people pass in a couple of years and others may live past 15 years.
Thank you for a well done web site. We are in the early stages of diagnosis but leaning towards LBD. My husband has had several years of low blood pressure, low heart rate and has been worked up to find no real reason. Also lots of day time sleepiness, and not always sleeping well at night.
But what really worried us is when he suddenly went into a 3 week spell of major, full blown paranoia with delusions. He thought “they” were coming for him…but couldn’t say who they were. He was convinced that he had done something to bring the attention down on him by the government, like he was somehow an active part of the Jan 6th activity in DC, or was planning to blow up some important building somewhere. But he had never had any connection to anything like that. He disappeared for hours, he took things from the house and got rid of them but now doesn’t remember where. He was stumbling and falling. He had a horrible headache.
Our PCP tried giving him some meds to calm him down til we could get to a neurologist. After 2 tries she put him on Celexa and the next day all the paranoia was gone, and most of his physical symptoms settled down as well.
But he is still having true syncope, day time sleepiness and what I call memory confusion. Meaning he remembers things that have happened but confuses when they happened or how they happened. He misremembered when my dad died and it had only been a few months before.
As far as we know, he has not had true hallucinations and so he is now quite convinced that he couldn’t possibly have Lewy Body Dementia. The neurologist is pussy footing around any diagnosis now and thinks he may just need a psychiatrist instead. But as a wife, I know that it is not as simple as a sudden onset of a mental only illness such as schizophrenia.
Anyway, I check sites like these from time to time to try and help refresh my mind as to what the symptoms might be for LBD and do they match what my husband is going thru. At least we finally got a call from the doctor who will be putting him thru cognitive testing. Every step gets us a little closer to what ever the answer to all this is.
Hi Ann,
Thank you for writing. It may be helpful to have your husband see a Movement Disorder Neurologist as many times they are able to diagnose LBD more readily. Please know we are here for you on our Helpline at 833-LBDLINE seven days a week from 8am to 8pm Eastern time.
I am under a neurologists’ care after a bad fall at home a year ago. He diagnosed me then with post concussion disorder. I continue to have issues with memory and I do things that do not make sense, not even to me. He told me to wait one year from the accident for further evaluation. We are at that point, but I also had a motorcycle accident about 6 months ago. That accident was my fault. I made a mistake that is a very uncommon mistake to make on a motorcycle. I still have no reason why I did what I did, but it cause the accident. No head injury, I was wearing a helmet and full leathers. yc
I met with the neurologist yesterday. He said he was testing me for LBD to rule it out. I looked it up and all of my symptoms fit, but I do not have all of the symptoms of LBD. I want to believe there is no way I have something like that. I am 58 and male, those are the only risk factors I have. I am hallucinating, at times I do act out my dreams, especially punching and crying out. But I cannot believe I am experiencing any form of dementia. I know the first step is to see what the tests reveal. I had an MRI yesterday and will have another assessment with a neuropsychologist in the next few weeks. I am well educated, college degreed, and according to standard IQ tests (clinically administered and physician overseen) I am above average, but I do not feel like above average anything besides accident prone.
The best way I can describe how I feel is I am using someone else’s brain. I am borrowing a brain. I know how it works, but when it rains I cannot find the windshield wipers, they are not where they were in my brain.
I say all of that to say thank you for this article. I am sure no one thinks they have dementia. I am not having delusions as far as I know, and no paranoia. My hallucinations, while vivid, are very short and I recognize them as hallucinations. They are always in my pariphereal vision and are almost always in motion, but I can look at them and see nothing there. I tend to hit my head a lot and trip on things often, but I do not have any brusing or anything so not hitting things very hard.
I am hoping for the best. I feel like I should tell my employer to let me know if I do things that do not make any sense or if he sees a sudden personality change. I am a project manager and I really need my sense of judgement but I am not sure if I can trust it at this time. I have so many questions about what I should and should not be doing right now, I do not know what to do. But your article does help. Thank you for opening this door.
Dear Terry,
Thank you for sharing all of this. Please wait to get the results of all of the tests. Though there is no specific test for LBD, many of the tests will rule out what you don’t have. You didn’t mention any Parkinson’s symptoms (slowness of movement, rigidity in arms or legs). Are you experiencing any of that?
My husband has Parkinson’s and dementia. His memory is pretty good most of the time. He seems more alert and talks best when he is around others but it seems to wear him out. Sometimes he laughs, talks, and yells in his sleep. One time he took my hand and bit it while we were sleeping. Twice he was at home but wanted to go home and once he saw a red haired girl sleeping on the floor, and another time he saw people in my tv room. More frequently are episodes of zoning out. It is as though he doesn’t realize I am talking to him and he isn’t able to respond. Does this sound like lewy body to you? If so, is there anything that I should or shouldn’t be doing? Parkinson’s about 10 years and dementia about 2 or 3 years.
Hi Karen,
When someone has had Parkinson’s for 10 years and then experiences dementia, it’s not considered Lewy Body Dementia though there are many similarities in symptoms that can be handled the same way. Wanting to go home, for instance, is very common. Hallucinating is also a symptom known to both diseases as it pertains to mid stage Parkinson’s. When you talk to him, if he isn’t responding, try to touch his hand or arm and see if that makes a difference. If he has hallucinations that are not frightening to him, it is best to go along with them. Never argue and it’s usually best to not say nothing is there as it can become very frustrating to him. It’s also best to try to change the subject. The important thing is for him to feel SAFE. Please know that you can call a Parkinson’s disease helpline or ours at 516-218-2026 seven days a week from 8am to 8pm seven days a week.
A very detailed and personal account of her father’s battle with this cruel disease. Thank you for sharing.
My Nana died in January 2022 after a long struggle.
Although many instances and problems were similar there were quite a few that weren’t.
My nana has always been unsteady on her feet and often had falls, however she did fall a lot and shuffle around in her latter years, which is very similar. In addition about 5 years before her death she started to say that she was seeing bats flying around the house which we knew was totally bizarre but didn’t ever think hallucinations were linked to dementia and had no idea.
My Nana although nothing like she used to, did still converse right until the end she did not become silent at all. In the end it was only a few sentences but she never fully became silent.
Her body weight dropped to 40 kilos and I believe that is a big part of LBD. I did read that once the BMI drops to a certain point you usually have about a year left and that’s what we were going by but I can’t be sure that’s true. We were always told that you could not specifically put a time on LBD, however body mass index was a good pointer.
At the end the main struggle was food and water. This went on for maybe 6 months The crying was constant the anxiety lasted 5/6/7 years. People were always out to get her, she constantly thought she’d upset somebody. She was worried that she left taps on or plugs on.
It really was heartbreaking.
But there were still good days, family chats, talking, taking her mind off it, keeping her occupied helped (not in the last 6 months).
She could always recall her past and never lost her long-term memory. She still could reminisce and that was a lovely part that wasn’t taken from her and. As I said, she still could converse but of course nothing like she could previously.
Now when I look back her handwriting changed about 10 years before her death, I found a letter a couple of weeks ago written in 2011 and there was a notable difference, at the time I presume I just put that down to age.
Her falls became more frequent about 10 years ago.
Her anxiety increased about 10 years ago and she was put on antidepressants. This was not helped by the alarm she wore on her arm. She would accidentally press it in the night and on occasion people would turn up and be in her bedroom and wake her up. This happened a few times and terrified her.
There are so many signs we didn’t pick up on sadly.
I’d like to say it’s been nice to read all these comments, it kind of helped to know what I’m in for as a wife that has a husband just diagnosed with Lewy Body dementia. First off it’s been very hard to except, He is at the 3rd stage of this horrible disease at the age of 68. I understand there are only 7 stages. He’s always been a kind gentle man and I’m so afraid that’s all going to change from all the story’s I’ve heard. I do believe this runs in a family because his father, brothers, uncles and cousins have all gotten different forms of dementia. My husband’s memory is good at this point he has just lost his passions he uses to love to do working on old cars, gardening, working in the yard. He has small hallucinations of bugs and spiders, and lost the ability to do our bills, writing checks and making a big decisions, he does struggle with the remote control and the phone, new things are impossible to do or comprehend. I wonder what the next 4thstage all about ? Or do I want to even know. I’ve been told to look up my questions but I’m not sure if they have the answer I want to hear… thank you for letting me vent and sharing all I’ve read today.
I’d like to say it’s been nice to read all these comments, it kind of helped to know what I’m in for as a wife that has a husband just diagnosed with Lewy Body dementia. First off it’s been very hard to except, He is at the 3rd stage of this horrible disease at the age of 68. I understand there are only 7 stages. He’s always been a kind gentle man and I’m so afraid that’s all going to change from all the story’s I’ve heard. I do believe this runs in a family because his father, brothers, uncles and cousins have all gotten different forms of dementia. My husband’s memory is good at this point he has just lost his passions he for his love working on old cars, gardening, working in the yard. He has small hallucinations of bugs and spiders, and lost the ability to do our bills, writing checks and making a big decisions, he does struggle with the remote control and the phone, new things are impossible to do or comprehend. I wonder what the next 4thstage is all about ? Or do I want to even know. I’ve been told to look up my questions but I’m not sure if they have the answer I want to hear… thank you for letting me vent and sharing all I’ve read today.