Anyone have experience with dementia with lewy bodies?

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.

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.

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.

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!

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!

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.

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.

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.

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.

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.