Lewy Body Dementia?

Question

Lewy Body Dementia?

Follow

Share

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

Alzheimer's & Dementia Diagnostic Criteria Lewy Body Dementia

This question has been closed for answers. Ask a New Question.

19 Answers

Most
Helpful Newest
First Oldest
First

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.

Helpful Answer (5)

Report

Thank you!! I'll keep researching as much as I can.

(0)

Report

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.

Helpful Answer (4)

Report

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.

Helpful Answer (3)

Report

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.

Helpful Answer (3)

Report

Look up symptoms for Parkinson's disease. Does he fit those criteria? Lewy body dementia goes hand in hand with Parkinson's disease.

Helpful Answer (3)

Report

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.

Helpful Answer (2)

Report

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.

(3)

Report

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.

Helpful Answer (2)

Report

ALZ too can really only be proven during an autopsy.

(0)

Report

See 1 more reply

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.

Helpful Answer (2)

Report

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.

(0)

Report

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...

Helpful Answer (2)

Report

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.

Lewy Body Dementia?

19 Answers

Recent Questions

Popular Questions

Related Questions