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Who has experience with Lewy Body dementia?


Husband was diagnosed with Early Onset Alzheimer's 20 months ago.


After reading everything I can get my hands on, our family feels he has Lewy Body dementia instead of Alzheimer's. (based on his symptoms, he fits Lewy Body dementia)


Anyone else been through this or going through this?


Are the diseases so similar that it's hard to tell the difference?


What I've read is that the outcome and life expectancy is pretty much the same.


Looking for insight and and trying to be prepared for the future.


Thanks

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A doctor diagnosed my father with LBD a couple of years ago. Could not understand as usually LBD goes with Parkinson’s and/ or early onset .
He was 91 at the time and showed no sign of Parkinson’s.
A year later he had a stroke. He had a brain scan at hospital. The consultant explained the scan to me. Damage at front lobal of brain caused by past strokes. I read up on this and it explains a lot. Behavioural problems, very vivid hallucinations, bad temper and mood swings. Get another opinion.
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Reply to Patience13
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Yes, I traveled the LBD road with my Mom. The hallucinations were pretty frequent and intense, the children in the room, the animals on the couch next to her, etc. I would ask her if she was afraid of them, and she would calmly reply, "No, they're just there", and smile her calm, gentle little smile. The hallucinations made me fear for her safety, however, I did not want her falling trying to avoid an invisible entity.
Her physicians,primary and geriatrics specialist (who turned out to be a quack), did not have extensive experience with LBD and she was referred to a neurologist. This neurologist really knew his stuff and prescribed a very low dosage of nortriptyline (Pamelor), which was effective at stopping the hallucinations. In larger doses, this medication is prescribed as an anti depressant, but this was not the application in this case.
I found having an understanding neurologist on my side as a referral was a Godsend during her future hospitalizations for UTIs and an emergency appendectomy. The ER staff and some ER doctors did not want to understand my concerns about some commonly used sedatives and other drugs having negative effects on a LBD patient. They would also want me to explain why she was taking an anti depressant. As her POA, I was able to decline treatments (within reason) until they spoke with her neurologist! Then they treated me with more respect and understanding.
Mom passed in 2017 after spending several years in a wheelchair (her choice, another story). Her muscles declined due to inactivity and she became unable to walk or support herself sitting up. The final decline happened quickly and the two week hospice situation was merciful and peaceful.
I guess my recommendation is to ask about that medication, and to have a physician on your side who will help you explain things to emergency personnel, who, as I found, are not always informed about LBD protocol.
God Bless you as you proceed and learn.
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Reply to kwyattearp
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My Mom’s diagnosis was simply “dementia”. There were more symptoms of vascular and/or Lewy’s than of Alzheimer’s. I concluded through time that it was Lewy. That had implications for her medication, as others have said, so yes, it’s important. There is a commonly prescribed med for Alz. that is toxic for LBD. She did well on Namenda (Memantine) at low doses and that was the only thing she took. She began having symptoms at about 90 and died last year at 99 ¼, after a mostly happy and comfortable stint. She never showed the rage that people cite in Alz. patients, she did have the hallucinations, sleep disturbances, shuffling and hunched gait, and occasional balance problems. She did not have the Parkinson’s-like tremors. So, who knows? But we treated it like LBD and that worked well. When she was having a bad day, we just said “Old Lewy is acting up again. Let’s just be patient until he settles down.” Time distortion, believing things on TV were real and happening to her, seeing things at night, getting up and sliding to the floor to end up sitting on the floor by her bed. Those things. The hardest to deal with was the sliding to the floor, as she weighed more than either me or my husband and it was so difficult to get her up. Several times our lovely local firemen came out and got her back in bed. (She loved all that attention from a whole crew of hunky-looking guys!). She did not do it to GET that attention, but did enjoy the attention when it came. By then, she had forgotten she got out of bed and slid to the floor. So without an autopsy, we became pretty clear that treating it as if it were Lewy’s worked better than treating it as if it were Alz. Good luck and trust your gut.
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Reply to lindabf
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You need to find a specialist to confirm. Sometimes people are so rushed or can't or don't do the testing, or the testing at the time doesn't indicate it, or they don't listen to the family and take into consideration their 24/7 observations. I had a friend whose husband was taken to the ER multiple times often due to falling or sliding to the floor and not being able to get up so she'd have to call for help. In home care wasn't an option. She was researching and learning and was the one to bring up to the docs about Lewy and they ultimately concluded she was right. Check with local Alzheimer's Assn, they may have a support group or educational programs just for people dealing with it, which may be of some help...
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Reply to gdaughter
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Look up symptoms for Parkinson's disease. Does he fit those criteria? Lewy body dementia goes hand in hand with Parkinson's disease.
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Reply to Taarna
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Someone below said guns should be removed from the home. This is absolutely correct. Or at least keep them locked away. My Mom got her pistol out one night (she kept it by the bed) and shot a hole in the wall. She was telling me about a “dream” she had where she shot the pistol. “It was just a dream, but the smell of gunpowder was so real” she told me. My brother went to her house & after inspecting the wall, found a bullet hole.

This was when we realized we absolutely had to figure out what was going on & got Mom to a specialist. Sleep disorders/issues are a part of LBD. We had to take the gun away because it was more likely mom would shoot someone who didn’t need shooting rather than an intruder.
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Reply to mollymoose
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Who diagnosed your husband? Was it a neurologist?
I applaud your own research... since you know your husband best. Just be sure to search widely as many sites are not authoritative sources. My mother was diagnosed first by a gerontologist...w/ Parkinson's(which is usually in conjunction with Lewy Body) and then she was diagnosed by a neurologist (referral made by gerontologist). Even then, the neurologist suggested further work-up; so we went to a center that specialized in Parkinson's (Institute) to have further validation. I think some doctors easily recognize dementia but don't take time or really know how to differentiate the types.
In my line of work.... Alzheimer's is used so popularly for patients we get referrals for, and yet the type of dementia may be vascular. Yes, they can parade like each other to some extent; also.... it is possible to have more than one kind of dementia. Just because you have vascular dementia doesn't mean you can't have Alzheimer's or LBD.
Get a referral to a specialist if this hasn't been done. Good work... keep looking.
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Kookie23 Dec 31, 2019
He did see a neurologist who specializes in Alzheimer's. I truly believe he has mixed dementia. A couple of times he's told me he's seen animals looking in at him from outside. He has had a couple of episodes of where he says someone is grabbing his feet or ankles. No one is around him. I'll keep,researching. Thank you.
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I suspected that my now-deceased father may have had LBD although he was already 90 and bedridden when I suspected it. Most days he seemed content and normal, but about every week or so I would find that he had thrown off his covers and seemed agitated and he typically had a hallucination on these days: one day he said lawyers had written all over the ceiling, another day there was a hornets' nest at the foot of the bed, and on another there were children in the room. The strangest one was when he wanted to be put back into bed instead of having to stand, and the only way I could convince him he was already lying in bed was by telling him my feet were flat on the floor and I was perpendicular to him.
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Reply to jacobsonbob
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The younger a person gets Alzheimer's the more aggressive it is. LB generally death occurs 2 to 20 years.
https://www.nia.nih.gov/health/what-lewy-body-dementia

I've known several people who had a loved one got diagnosed with LB and died within 2 years. They were in their 50's and 60's at time of diagnosis.

My mom got it age 80 but she died age 90. However, it was very difficult keeping her going but she also had a very comfortable life. In the end I got a feeding tube in her to keep her from dying of dehydration which can take weeks. In short I met all her needs. It was not Alzheimer's that ultimately killed her. She had liver tumors causing liver failure--so she could have been a walkie-walkie self caring person and died just the same. Not once did I ever have to give her psychotropics or narcotics. Just infinite patience and love. She was on hospice for two years but I used them as a clinic for labs and portable chest x-rays. Mum died at home very peacefully and even the hospice nurse was surprised how peaceful she was -- and never had to open the comfort pack. Mum was only moaning when I had to turn her to clean her so I knew she could respond to discomfort..but I had to clean her she can't just lie in her poo and urine!--but when back upright and cleaned up she was good and peaceful!
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Reply to cetude
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My 93 year old dad was diagnosed with LBD several years ago by a geriatric psychiatrist. The only symptom on the list that I'm not aware he has had are the hallucinations. He had them one time when he became dehydrated in September (which is what prompted the move to AL). The hardest part for me has been the up and down of this disease. It can vary not only day by day but hour by hour. It is a constant roller coaster of emotions for him. He'll be fine one minute and a bundle of anxiety the next. We have a pretty good handle on his medications now which has made this less but I have seen the progression over the last 5 years.
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Reply to Babs75
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There is also a video series by a son, Joe, about his mom, Molly, who has LBD.
https://www.youtube.com/c/joejoe

In the end, what difference does it make which type of dementia it is; they are all horrible! That being said, Grandma is absolutely correct about different meds for different dementia types, so getting as accurate a diagnosis as possible is very helpful. Don't rely on your PCP; go see a neurologist.

Be aware of what is to come, but don't obsess over it. The changes will come slowly at first, almost undetectable at times, so knowing what to expect helped me to consciously remember my mom pre-Alzheimer's.

All the best!
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Reply to bluefinspirit
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Really good website. Has helped me a lot. Read through for resources including a Facebook group.

http://www.lewybodydementia.ca
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Reply to lindasmom
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Hello, one of the women in my chorus was diagnosed with LBD, and she & her family ended up making a documentary about her journey with this disease. Google "Lewy Body Dementia - Sue's Story" to see more. Best wishes.
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JoAnn29 Dec 30, 2019
I can see this as a "helping" tool but I would not want to be the person they are filming. Maybe she gave permission in the beginning. I took no pictures of my Mom. I didn't want to remember her that way.
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One of the important things is to get an accurate diagnosis as soon as possible.
There are medications that are often given to dementia patients that people with LBD can not tolerate and could possibly be fatal to them.
Another thing is often with LBD there are personality changes and the person can become violent. With that information if it EVER becomes dangerous for you to keep him at home you should consider the fact that you might have to place him in a Memory Care facility. And when I say dangerous I mean for you, him or anyone else in the family.

Has he been diagnosed with Parkinson's?
Is he a Veteran?
If so depending on where and when he served this might be related to his service so if this is a possibility please contact the VA.
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Reply to Grandma1954
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Kookie23 Dec 31, 2019
He's not a vet. He hasn't been diagnosed with Parkinson's. I'm watchful of his outbursts. I'm kinda on guard, but I don't feel threatened or unsafe. His triggers are large groups, loud noises and voices, a lot of activity or commotion going on around him. Also if he feels someone has provoked him or did something to him intentionally.
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I really thought my mom had LBD. She also shuffled and hunched forward. The neurologist ordered a DAT Scan. This would determine if it was Lewey vs Parkinson. The scan result was normal. She was diagnosed with Alzheimer's. I understand that only a brain autopsy would determine if it was LBD but you might ask her neurologist for a DAT Scan. It is given with contrast and the her brain is scanned for 30 minutes. I was glad to learn the SCAN was normal.
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JoAnn29 Dec 30, 2019
ALZ too can really only be proven during an autopsy.
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My mom was diagnosed with Lewy Body Dementia & vascular dementia in August 2015. Her memory is still pretty good, her decision making skills are horrible, the muscles in her body have deteriorated so much that she can only feed herself & that literally takes her hours. She can hardly talk, so we’re not sure how much she hallucinates now. She sometimes thinks her dreams are real & there is absolutely no persuading her it’s not (we only try to persuade her they’re not real when it’s a nightmare).

From what LITTLE I’ve seen of Alzheimer’s disease their body still holds up pretty good until the very later stages. With Lewy Body, it seems the body breaks down more quickly & earlier. I could very well be off base with that, it’s just the main difference I’ve noticed.
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Reply to mollymoose
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Kookie23 Dec 30, 2019
Thank you. From what I've read with LBD is they have very good lucid days , to the point where you think they're 'faking' it. I've said from the beginning that he seems to be faking his illness and it drives me crazy. But...... there are those days where he proves me wrong. His his mostly cognitive, reasoning, thought process. He shuffles his feet and walks a lil hunched over. He has a very slight shake in his hands. Very very emotional and gets angry quickly and lashes out. Next second he's fine. My head just spins.
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Ted Turner has Lewy's Body for some years now. Robin Williams had it. The most certain diagnosis of it happens with autopsy after death. There can be signs by MRI and dementia. My brother is diagnosed with early Lewy's by symptom. He has some balance problems, but also has a benign brain tumor sitting on the medulla which causes balance. If you look at a chart of Lewy's the symptoms come and go, go up and down, better and worse more than Alzheimer's or vascular. I find Lewy's less scary in early stages that the other two. Seems less violent acting out in early stages.
There is much online about Lewy's and there is much on Facebook, and in fact one many HAS it and lectures around the country on it, has a Facebook Page to help others, and functions quite well with early Lewy's. None of the dementias are easy. Everyone's story is unique. Do what research you can online and definitely join the Lewy's pages on Facebook.
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Reply to AlvaDeer
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Kookie23 Dec 30, 2019
Thank you!! I'll keep researching as much as I can.
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How old is your husband? What symptoms is he having that makes you feel it is LBD? Has there been a significant change in him in the past 20 months?
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Reply to Monica19815
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Kookie23 Dec 30, 2019
He's 65.
I've said that there are days I feel he's 'faking' it! I know it sounds ridiculous. But...... there are days I know he's not faking it. I don't really feel it's memory. His is cognitive, reasoning, thinking, thought process etc.
He shuffles his feet, lil hunched over , and a very slight shake in his hands. He's very emotional, cries at the drop of a hat. Gets angry easily and will tell someone off in a second or try and go after them. Seconds later, you'd never know that anything happened. He's not working or driving per doctors suggestion. He's angry and resentful about that. He no longer can hunt either. He has very clear past memories. His health is good. Tires easily. He had all the testing and they said Alzheimer's........I'm just confused. Either way I feel it's definitely dementia, his mother had Alzheimer's. Which one he has has, I'm just not sure. I could go on ... Thank for all input.
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LBD is worse than Alzheimers, sadly.
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Upstream Dec 30, 2019
Not a very nice comment. It's pretty much the same animal just a different color. My dad was diagnosed with LBD. He lived in a memory care home and it seemed that ALL of the residents' lives were pretty lousy, no matter what type of dementia they were "diagnosed" with. BTW, the medical community cannot yet declare what type of dementia a person has until they die and an autopsy is performed. Autopsies are not typically performed on an ill elderly person. So, most of the time nobody ever knows what type of dementia the person had. My dad's various doctors threw out Alzheimers, Lewy Body, Parkinsons, Alcohol-related dementia, you name it.
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