Anyone have experience with dementia with lewy bodies?

Hi Upstream - I will tell you that there are basically two types of DLB: one is primarily cognitive in nature, the other is accompanied by Parkinson-like symptoms (tremors, gait and balance issues) It can only be DEFINITIVELY diagnosed by examining the patient's brain at autopsy, but a qualified neurologist can diagnose it with reasonable accuracy based on a combination of patient history, a physical exam and cognitive exams. Is your father experiencing hallucinations? This is a pretty good earmarker for DLB (as compared to other forms of dementia). I recommend you visit the following website - VERY informative, and they have a discussion forum too: Google lbda Best wishes for you and your father.

Thank you for your response. My mom told me a few days ago that he has had hallucinations. She had been keeping it from me, I did not know. They do not live with me, but down the street. He does have some Parkinson-like symptoms. The complicating factor is that he is a heavy drinker and many of his symptoms could also be caused by daily, steady alcohol consumption. I had been blaming the symptoms on his drinking until last week when DLB was mentioned by the doctor. It sounds like his neurologist has a good series of tests lined up over the next two weeks. The first was yesterday and I think a PET scan.

My husband was originally diagnosed with Parkinson's and additionally with Alzheimer's. However, after MANY tests (MRI of the brain, EEG, carotid ultrasound, neuropsychological exam, evaluation by physical therapist, occupational therapist, speech therapist) and monitoring medications for each, the doctor now believes my husband has LBD because of the hallucinations, agitation, paranoia, combativeness and a host of other things. I had never heard of this disease either until it was mentioned in passing when I took my husband to the ER in January because of very strange/psychotic behavior. His then neurologist suggested I take him to the ER. They tested for UTI among other things because, apparently, a UTI can cause some very strange behavior in the elderly,esp those with any type of dementia or other mental impairment. I agree with yaya about the website. It will give you some great information. What I just found out was that my husband's mother and aunt also died of LBD. I never knew either because there is a 17-yr age difference between my husband and me. He never took me to meet his Mom because she was ill, but from what he said, I thought it was Alzheimer's. He never told me all the horrible things that actually went on. His niece, to whom he has always been very close, told me the whole story just in the past few days after I sent her a letter explaining all that has been happening with her beloved uncle. There was a 3rd person in the family that died from this disease, too, but it was another uncle of this niece on her mother's side and thus unrelated to my husband's family. There is much published and known about Alz, but little about LBD. Both are awful, but LBD has some symptoms that are far worse than Alz. People can also have ALL of these: PD, Alz and LBD, but none of that can be confirmed until an autopsy is performed. I would agree with you that some of what is happening to your Dad is due to his drinking, but I am glad that you are having the tests done, etc. It's a long, hard road. We are still going through some testing after 4.5 months because it just takes that long for the doctor to be able to assess the condition on and off medications, trying this and that to see what helps the most. My husband seems to be in a rapid decline, but the doctor suspects this may have been going on for 5 years already, but it just became very evident when on Christmas Day, 2012, my husband suddenly didn't know where I was or when I was coming home because I was visiting my daughter and her family. He couldn't and wouldn't go because he doesn't like my daughter anymore...that's another long story...and he couldn't be around 3 children under the age of 5 for days at a time. He was quite capable of doing simple things for himself when I left...getting cereal for breakfast, soup for lunch, preparing a frozen dinner. Something happened and no one knows what, but when I came home, I found he hadn't showered or shaved, hadn't fed our bird and who knows if he ate anything other than cereal. I tried desperately to get home early, but I couldn't get a flight back to Florida over the holidays...not in a 100 mile radius! It was a terrifying time for me. With no family or friends where we live, I was in a panic. Please continue to monitor all that is going on with your Dad. Keep a journal of any "episodes", no matter how minor they may seem. Think back long and hard over the past few years. What did you notice that may you wonder if Dad was OK? Once you read on the LBDA website, you will have a better understanding of what may have been early signs that, not knowing anything about the disease, you may have missed. When I looked back, I was angry with myself and his former doctors for not recognizing signs. Then I realized that (1) my husband is a great "actor", able to put on a great show for "outsiders" and (2) many PCP don't know anything about this disease, not because they are ignorant or lazy, but just because it's just not in the news like Alz. My husband say 2 neurologists when we lived in another state. Only one thought he had PD. The first one we saw here just accepted that diagnosis without any testing, etc. It wasn't until my husband started displaying psychotic behavior that our PCP got us an appt with his new neurologist. I am very thankful for that. I'm sorry for this LONG and winding post, but I just felt I had to share with you as much as I could. Learn as much as you can and realize you might be in just the beginning stages of what is going to be long, hard and frightening battle. I don't want to scare you, but it's best to face the reality of this while you still can make some concrete plans for his care, hopefully even with his input. Good luck and most importantly, God bless!

Sorry for the typos!

Scared - thank you so much for sharing all of your information! I really appreciate it. My mom & dad had a similar episode at Christmas 2011 to your Christmas story. They were invited to a nearby friend's house for dinner. Dad refused to go, so mom went without him. When she came home he was on the floor and totally freaked out, evidently. That was our first sign of problems. I blamed it on his drinking, which he also mixed with anxiety meds. He could not remember how many pills he had taken. Long story short, he quit drinking during the summer for a few months and was almost back to his old self! Then he slipped and started drinking again. Now he is very defensive of the drinking and won't stop. He fits a lot of the symptoms of LBD and I do think some of them have been here for a while. My dad is getting very paranoid. His sister lives out of state and has been calling every day to check on him. He won't take her calls and is getting very angry that she calls so much. Today my mom informed me that he wants my mom to basically tell his sister to get lost and stop calling. His perception and judgement has gotten very poor. And yes, the decline has been shockingly rapid. Well, thanks much for all of your insight. I appreciate you taking the time for the post.

Sorry to hear about your husband's Lewy Body Dementia. My husband also has it - it was first diagnosed as either Parkinson's or Lewy Body and then a year later, we got a definite diagnosis of Lewy Body. Yes, hallucinations are a big problem as is REM which has made it impossible for me to sleep in the same bed. He acts out his dreams and has attacked me as a result. You will find that sometimes when company is there, he will be very good - it is called "Showtime" and is not something he can help. It often causes friends and family to think you are making up some of the things you are going through. I tried keeping a journal but found it very depressing. My husband is now at the point where I cannot leave him alone, even for 30 minutes so he has to go everywhere with me. I recently broke down and hired a caregiver to come and be with him so that I can go to a concert. My father died of Lewy Body Dementia about 25 years ago when it was just being identified. His diagnosis was Parkinson's but he didn't show any of the usual signs of Parkinson's so we always wondered about that. His dementia symptoms fit Lewy Body totally. I wish there was something positive I could tell you but just take every day for what it is. My husband did give up driving and stopped drinking all on his own. That was a tremendous relief to me. I was lucky about that. I have been advised to join support groups but that would mean leaving him alone or paying for someone to take care of him so I have not done it. I also attended two meetings a couple of years ago but found them to be depressing. My thoughts are with you.

My husband died of DLB five months ago, after about ten years with the disease. I was able to keep him at home all that time, but most people in my support group have had to place their loved ones in a care center at some point.

Each kind of dementia is awful. There is no "good" or "better" dementia. Let me mention some of the distinguishing features of DLB.
1) While Alzheimer's Disease (AD) goes through recognizable stages, DLB does not. It gradually (or rapidly) gets worse over time, but there is no recognizable "stage 3" or "stage 5".
2) Cognitive abilities fluctuate frequently, with good days and bad days, and even bad hours within a good day.
3) Memory loss (especially short-term memory) is a symptom, but it is not always the most prominent feature of the disease, and it does not follow the same pattern often seen in AD, with the patient regressing backward through the years. My husband's memory loss was pretty constant for 10 years, with "bad days" being worse, but not with year 6 being worse than year 2. And he never thought that he was 30 or that his twins could not be his daughters because they were too old.
4) Impaired judgment is often more of a problem than memory.
5) Depth perception and visiospatial abilities in general are often impaired. This can lead to falling and/or fear of walking, difficulty getting seated, or into bed.
6) There is less actual death of brain cells in DLB which means treatments have a better chance of succeeding. If you encounter a doctor who throws up his or her hands and says, "He has dementia. There is nothing we can do," throw up your hands and wave goodbye. That isn't true of any kind of dementia, and it is especially wrong-headed about DLB. A cure? No. Many approaches to improve quality of life and reduce or eliminate symptoms? Yes! For example, Aricept, developed for AD, is more effective for DLB. On the other hand Haldol should never be given to DLB patients as it can cause permanent damage or even death, but may work OK in AD patients. You need a doctor on your team who doesn't think all types of dementia are the same.
7) Loss of the sense of smell is common in DLB. This can have a negative effect on the enjoyment of food. My husband gradually got used to it.
8) The protein deposits called Lewy Bodies (after the researcher who discoverd them) are found in the brains of persons with Parkinson's and persons with DLB. Exactly what the disease is called depends on whether the symptoms are mainly physical or cognitive and which kind of symptoms came first.
9) The kind of memory loss involved does not usually include not recognizing formerly familiar faces. My husband knew who all the people he interacted with were, up to the very end. This was the experience reported by caregivers in my support group, too. He might not have remembered the hospice nurse's name, but he knew who she was.
10) Generally, DLB is not considered to be inherited or to run in families. Early onset forms may be an exception. This does not mean that the same family can't have more than one person with DLB, just that the risk is not thought to increase greatly if it has appeared somewhere in the family.
11) At least in our specialist's opinion, physical activity, social and mental stimulation are especially important in DLB.

Those are kind of the highlights I can think of in my journey as a caregiver. I highly recommend the official LBDA web site for good information about all aspects of the disease.

jeanne - Wow, what a wealth of information! And glad to hear the upside, to the extent that there is such a thing. How wonderful that you would be able to keep your husband at home, you must be a trooper. Sadly, I don't think my mom is strong enough to live with this long-term for a variety of reasons, so I see my role as pretty important in determining where we all go from here once there is some level of diagnosis from his neurologist. I really appreciate the response!

My dad was recently diagnosed with DLB and total body atrophy. He has had hallucinations, talked to his deceased mother who has been gone for 55 years, and insisted we pick up his brother who loves in another state for dinner. Sometimes he can not feed himself and needs assistance walking (with walker and wheelchair directly behind. He is incontinent but is assisted to potty for bm. He can not bathe himself. Sometimes he freezes when walking or trying to sit or stand..he locks up and we can not move him. He doe not always comprehend directions like where to,place his hands on his wheel chair to move it.. He has good and bad days with regards to movement and cognitive ability. He has to now sleep in a hospital bed because it keeps hi for trying to get up as he is a high risk for falling. Back in Feb he was in hospital for 2wks and no one could tell us what was wrong. While there he lost the ability to swallow which is not a problem any more, but he can not feed himself with utensils. He spent a week in a NH rehab and then we had to bring him home. Finally his PCP recommended a neuro exam and it was from him that he was diagnosed. I had previously researched various dementia types and came across DLB. All the symptoms including the Parkinsonisms were spot on. Dad has since been put on meds for sundowning which have helped with the hallucinations of seeing things that are not there, like stings on his fingers to seeing and talking to deceased friends and family. Dad is 83, we know there is no cure and he will get worse,over time. DLB combined with total body atrophy where his muscles are not always working well cause the additional problem with care and mobility. My sister lives with dad and mom and takes care of them 24/7. Mom also has dementia and is not always "there" to help. Research as much as you can, and get as much help as you can because the road ahead is going to truly be one that will be difficult . I live in MA, my sis and parents live in FLA and I try to get there a few times a year to give sis a respite. It is very difficult and heart wrenching to watch parents decline this way, so again,please,remember this site for venting and know you are not alone. Good luck.

I'd like to offer some additional observations, especially in light of Lindipan's post.

I was able to keep my husband home for the entire journey, not because I am a better caregiver than the people who couldn't, but because his dementia developed very slowly, and because I got some help. The more usual course is for the dementia to eventually get to the point where it would not be optimal or even possible for one caregiver to provide the best care in a private home.

I did not get as much respite as I should have, looking back. It is almost six months since I'm no longer a 24/7 caregiver and I still feel worn out and depleted. I expect to fully recover, but it would have been easier, I think now, if I could have gone away more.

But I did have help. Our son took care of all household maintenance, yard care, emergency plumbing repairs, etc. I had a house cleaner. A daughter managed his many medicines. One of the kids would stay with him when I went to caregiver support meetings. For a few years he went to an adult day health program a few days a week. When his health declined to the point where that was no longer suitable (in his last year) I had a PCA 32 hours a week who helped him dress, bathe, made him breakfast and lunch, helped him with PT exercises, 4 days a week. (I worked full time to support us, from home.)

His medical team was awesome in addressing each new symptom as it arose.

Even with his very slow decline, I could not have kept him home without the help I had.

I can't imagine one daughter taking care of two parents with dementia without considerable help. And even with help, the time may come when keeping both parents at home just is not feasible.

The caregivers in my support group who had to place their loved out in care agonized over the decision for many months. And once placed they continued to spend part of each day in the caregiver role. No one who is forced by circumstances to placed their loved one in a professional care center should feel guilt or like a failure. We each do the best we can as long as we can. I was lucky. I certainly don't mean to say to anyone, "I kept my loved one home, and you should, too."

My advice is get help while your parent or spouse is home, and be open to possibility of care center placement.

The Lewy Body Dementia Association has a great website; lbda.org. Lots of information and forums where you can read about other caregivers rollercoaster ride with Lewy (join the forum and you can participate). There are also two great support groups on Yahoo, one for spouses; the other for adult children.

I just wanted to log back in here and say how glad I am to have found other people talking about this awful disease...an entire thread devoted to it in fact!! I've been trying for so long to find other people coping with it. My MIL has the Parkinson version...started 7 yrs ago with slow shuffling gait, monotone voice. We'd never HEARD of DLB so at the time we thought she was depressed. Then she started having falls. She'd go for weeks with no balance problems, then go through a stretch of two or three "off" days - kept tending to tip backward. Then it would clear up and she'd be fine again. It was so bizarre! After about two years of this she contracted "shingles" - three days after I'd taken her to the ER for that she couldn't get out of bed...severe leg tremors, almost NO sense of balance at all. Long story short, she was diagnosed with "atypical Parkinsonism" in July 2008. I immediately started researching, learning everything I could, trying to figure out which of the more specific disorders MIL's symptoms fit into. I managed to narrow it down to three but was still frustrated because there didn't seem to be any "true" match. And everything about her symptoms was so random. That word kept coming to mind over and over...I even started journal that I titled "random navigating" because that's what it felt like I was doing.
She started having visual hallucinations the first year she was in the wheelchair, but at the time we tended to dismiss them as vivid dreams...she must have just fallen asleep in her chair, that sort of thing. Around that same time she also started hearing a man "singing" to her...believed he was out in her yard somewhere. We also began to notice a decline in cognitive function...some memory related but mostly executive...couldn't balance her checkbook, numbers in general would get her all befuddled, poor judgement (in Nov. 2008 she ordered over $500 worth of foodstuffs from Figi's and Swiss Colony catalogues - all for her own consumption!!) couldn't follow recipes or even a simple set of directions, etc... There were days when she seemed right on top of her game and days when she didn't know if it was morning or afternoon. Of course every time we took her to the neurologist she was having one of her "good days" so she failed to see any cognitive issues, and since we weren't entirely convinced ourselves that she was hallucinating we just told her MIL was occasionally having "some very vivid dreams". In 2011 the neurologist told me she was "leaning toward" a diagnosis of MSA. Then this past February MIL went through a full blown hallucinatory "event" that lasted well over 12 hours, seeing things in droves....made her agitated, delusional. It was one of the most nerve wracking ordeals I've ever been through.
After that I conducted a "look-back" through the last five years and I'm now convinced she has DLB. It's as if all the "random" pieces have finally fallen into place, and although it s**ks at least I don't feel quite as frustrated.
Wow, didn't mean to ramble on like that...guess I needed to unload more than I realized when I started this post. Thanks for listening...I hope us LBD'ers will continue to vent and share with each other.

jeannegibbs, thank you so much for your straight forward and logical information. You were blessed to have so much help. There are so many of us who have no family or friends or finances to get the amount of help you had. Still, the emotional toll on any caregiver, no matter how much help they have, is hard. Watching a loved one "suffer", even if they really aren't in pain, is very, very difficult. I hope you continue to recover from your experience, and with God's help, you will.

My mom has lewy body dementia. I highly recommend a book " A Caregivers Guide to Lewy Body Dementia" by Helen Whitworth. I got in on Amazon. It is loaded with tons of useful information.

Thanks to all for responding. Seems we have started a good and necessary discussion. I'm sorry to hear of so many dealing with this, but pleased with the support and insight provided! Thank you! Dad has more tests this week and we meet with the neurologist Friday. If there is any info. that is worth mentioning here in this discussion, I will be sure to post.

I've been caring for my Grandma for 2 years. She has vascular dementia, when we had her on Risperdal she was hallucinating and was convinced I was poisoning her. We switched and had her on Buspirone. With that med she ended up having a psychotic episode and was in hospital on observation for 3 days where she punched a nurse. I was being hit, kicked, bitten, and verbally attacked DAILY. Worse during her sun-downing times which would start at 3:30 almost on the dot, daily, and go far beyond her being in bed. Her gerontologist was practically useless. And so I, as always, began doing some hard research and came to the conclusion I believed she also had Lewy Bodies w/dementia.

She was having hallucinations and delusions on a daily basis. It got to the point I couldn't go into her room because she was convinced I was trying to kill her. That's when we had to put her in the observation unit in the hospital for 3 days. Finding a psychologist who took the time to listen to me and listen to my concerns and research is what made the biggest difference for us.

I started noticing she would lock her fingers pointing towards the TV, she would tell us the FBI was communicating with her through her oxygen tube, she "saw" neighbors across the street looking through the windows (they weren't), she "heard" people in the basement and told me constantly she heard music and people having a party downstairs (we don't have a basement or a downstairs).

I took her to a mental health expert (psychologist specializing in dementia) and she came to the same conclusion. We took her off the Buspirone and put her on Seroquel. I saw a change literally in 48 hours! She has been on that med for almost 8 months now and I would call it a lifesaver at this point. I have only been slapped once or twice, and she has what we call "mini meltdowns" rarely now, and usually while she's getting ready for bed. Her "tantrums" used to last up to 6 hours and now they tend to max at 15 minutes. Our house is now filled more with laughter than screaming and cursing! :)

My opinion: Do your research. If one med doesn't seem to be working, consider trying a different one. I learned that people with Lewy's tend to be highly sensitive to certain anti-psychotic meds and they can actually make their condition worse rather than calming them. That's what happened with my Grandma.

You are their biggest advocate! I had to make doctors listen to me when they didn't want to. But I can be pretty pushy sometimes ;)

Also, at night, she takes Melatonin along with her other meds. And, since she's been on the Seroquel she usually will sleep through the night, where before, she was waking up, sometimes, up to 6 times a night!

My husband has LBD. Our most recent episode was him refusing to go to sleep because something disastrous would happen if he did. He slept 3 hours before he decided he must stay awake - I had 1 hour of sleep. It was a very long night. He also takes Melatonin every night but I am not sure how much it helps. He has been "OK" since then. He experiences "showtime" when he goes to the Dr. or when we have company for a short period of time - longer times and he will revert to his usual LBD hallucinations, inability to speak properly, etc. Almost every evening he goes into "sundowning". I particularly like the book "Living With Lewy's" by Dr. Carol F. Lippa. I believe It too is available at Amazon. Since the number of people with LBD is second only to Alzheimers, I wish there was more information and awareness of the disease. Most people whom I talk to have never heard of it. My father had LBD and passed away in 1986 when not much was known about the disease. He was given Haldol over and over and we now know it is not to be given to LBD patients. My thoughts go out to any of you dealing with someone with LBD.

Thank you for the additional comments - I very much appreciate! GleeWhiz: when you say he experiences "showtime" when he goes to the doctor or when there is company, do you mean he acts more "normal"? Because I visit my parents several times a week and check in daily, and my dad never seems all that abnormal, but my mom indicates things are bad at night and other times when I am not around. Just curious. My mom is an extremely negative person so I am trying to determine if she is making it out to be worse than it is. Thanks!!!!!

Yes, "showtime" is when he acts "almost" normal or at least much less confused and able to carry on a conversation and get all the words out. From what I have read, he has no control over this. You might want to get "A Caregiver's Guide to Lewy Body Dementia" by Helen Buell Whitworth and James Whitworth. They discuss "showtime" in great detail. It sometimes causes problems with friends and family because they think you might be exaggerating how your LBD person is usually acting. The definition of "showtime" in their book is "periods when a person involuntarily appears much more aware than usual". We notice this when we have house guests - the first day or so, my husband appears to be quite well. By the end of the visit - 4-5 days later - our guests will understand what we are going through. The evenings are always the worse for us as "sundowning" affects my husband every night.

Thank you for that information. My mom keeps my visits short (no longer than about an hour and a half). I keep thinking she is exaggerating his condition because he seems mostly fine to me, except confusing a few words here and there. He has a horrible concept of time and day. Good luck to you and your care giving. This has just started for us. My mom seems weak and intolerant, so I forsee that I will need to be pretty involved with my dad's situation.

Showtime is a real event that makes the caregiver wonder if he/she is the one who is losing it! My husband kids around with the people at the doctor's office, makes them laugh, etc. But as soon as we're out the door, it is the same sullen, grouchy person that I have to live with the other 23.5 hrs a day. It isn't his fault, I know, but it's just so hard to deal with. Believe your Mom when she tells you what it is like for her 24/7. Send her on a weekend trip with friends or something so you can experience first hand what she lives with day in and day out. It will be a real eye opener for you.

Thanks, Scared. Mostly I think Mom is trying to shield me from things. Part of the problem is my dad is also an alcoholic, so I have blamed the variations in his behavior on his level of drinking at any given time. I'm still trying to sort out what is dementia, what is the result of the alcohol abuse, and to what extent they are one in the same....

Sorry to hear about the alcohol problem. You sound very "together" and you should be fine, but don't wait to ask for help. My husband's niece has told me a LOT about this journey since she cared for her grandmother (my husband's mother) and her great aunt (my husband's aunt) both with this disease. A startling revelation to me because my husband never told me about it. I was 38 when we married, and his Mom was already ill. I never met her because he told me it would confuse her too much. I assumed AD...it wasn't, though. It was LBD which I find to be much more insidious than AD. Both are bad for sure, but in addition to the cognitive decline of AD, LBD causes hallucinations, personality changes, psychotic events which can lead to aggression, etc.. His Mother who was just a little women caused a lot of havoc, even in the NH, according to the niece. Very, very scary. Good luck and God bless.

Good luck to you, too, Scared. I read some of your other posts on other questions and it sounds like you have a lot on your plate. I feel for your situation. Hope you find some peace and happiness each day. Thanks for sharing your thoughts and experiences with me and others. It is helpful. It seems like a good thing to be a part of this on line community.

The drs and neurologists all very reputable lumped ALZ on my late hubby along with Parkensons. I researched his conditions extensively on the internet 10 years ago. It was an obscure hypertext site that brought LBD to my attention. LBD and ALZ are 2 very different animals. It was the crying out, yelling in his sleep and the thrashing around that was the final syptom that led to my determination that it was LBD as opposed to ALZ. In addition my hubby had Vascular Dementia and Frontal Temporal dementia. I suffered a few black eyes and injuries and stop trying to sleep in the same bed with him. There are new tests out there today that are helpful. I heard the same after he is dead we can tell you which one he had. Dumb and dumber. I started asking myself which one would go first. Drs were not informative about PD and anything he had. I highly recommend researching and staying on top of the current research. GABA is now being used along with the dopamine inhibitors. No one ever told me the real deal with his illness. Not once that they were behavioral variants or the UTC complications or the incontinence problems. And the drs gave my late hubby benzodiazepines which are a no go. He did not need meds that were goung to put what was working in his brain to sleep. His medical care was third world at best. Do get help. Do stay up with the research. I lost him years before his death. The new research with GABA looks promising. My thoughts and prayers go out to all especially the caregivers who walk this walk. Take care of yourselves. Peace and Grace.