I have been researching different types of diseases and found that Dad has all the signs of Lewy body dementia. What can we expect with this?

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My dad has not been fully diagnosed with dementia. His primary MD told us she felt like he was getting it because all other test where good! He has been paralyzed from the waist down for 40 years and in last 5 he has been pretty much bed ridden. My sister and I have been researching different types of diseases and have found that he has all the signs of lewy body dementia. Is anyone familiar with this? In the last month he has really went down hill health wise. Can anyone help? My family is just learning to deal. Thank you and god bless all of you and your loved ones!

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The sleep disorder called REM Sleep Behavior Disorder (RBD) is closely associated with Lewy Body Dementia. It can show up even decades before the dementia does, some time after the dementia symptoms, or not at all.

Not everyone who has LBD also has RBD. But everyone who has RBD and also dementia most likely has LBD. Is his doctor aware the sleep issues?

By the way, Parkinson's with Dementia and Dementia with Lewy Bodies are essentially the same thing. They both involve tiny bits of a certain protein ("bodies" of protein) in the brain. If these bodies first appear in areas that control movement, Parkinson's with dementia is likely to be the diagnosis. If the bodies start out in places in the brain that control executive, reasoning, etc. the diagnosis is likely to be Dementia with Lewy Bodies.
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Jeanne,

Yes he does act out in his sleep. That's how this began eight years ago. Night terrors. Fighting, and carrying on. I was woken up a lot and even took a couple of swipes, so it became separate bedrooms. On to the Dr. , then the eventual diagnosis of Parkinson's.

There is an anti hallucination drug called Nuplazid but it's only for people with Parkinson's. It has helped a great deal but not 100%. It's much better though.
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These are my mom's signs that led to her diagnosis of LBD:
Tremors
Trouble with processing more than one command at a time
Hallucinations and Delusions
Muscle rigidity resulting in inability to walk or stand and very slow reflexes
Active while sleeping
Loss of common sense and ability to reason on things
Trouble swallowing liquids without choking

The only thing they can give her for any of this is Seroquel with helps with the hallucinations. She still has them but before the meds they used to be very scary (involving blood on the ceiling among other things). She got worse when they tried her on Parkinsons meds. As far as the swallowing, she uses a straw at all times which helps work certain muscles and prevents too much from going down at one time.

LBD is a hard road as they deteriorate. I wish I could tell you more but I'm still learning even after 2 years. I wish the best for you.
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I have a friend who saw her husband decline rapidly...he is in his own world with various hallucinations, and beliefs that are false. She has significant health issues of her own and would find it intolerable (trust issues mostly) to have caregivers at home; the most challenging aspect would be to change his clothes/depends etc, laundry. So after a fall he has wound up in a nursing home environment. She did research on her own, and the professionals tend to agree, that he does have LBD. I'd encourage you to connect with your local Alzheimer's Assn for more info; they may have a support group that is specifically for those dealing with that condition.
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john50 and Rosemary44, do your loved ones seem to act out dreams in their sleep? Legs working as though they are running, swing their arms, etc.?
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I suspect my husband has Lewy Body. He has Parkinson's w/dementia. The only true way to diagnose Lewy is after death and they dissect the brain. Otherwise, it is what you see them do, or not be able to do anymore.

My husband really can't think for himself. He falls, walks away from his wheel chair, can turn on a light without thinking but he can't turn it off because he can't figure out what to do. Has become incontinent, and won't stay in place for bowel movements.

Sometimes he can dress himself, other times the clothes are on backwards. Bad bouts of dementia days and he puts his socks on the same foot. Tries to do the same with his shoes. If I ask him a question, it takes forever to get an answer. And if the question has a choice, he can't choose.

Then his speech is not understandable, it can get better during the day for a short period and go back to gobbly-speak. He talks in numbers. 25 of the 10 people....what?

He hallucinates all night long, very scary people. He can eat by himself and swallows, but drools all day.

Of it all, the worst is the falling. He will fall right next to the bed, never thinks to fall on the bed. Can't grab for anything to balance himself. He just falls ...mostly backwards.

I hope this list of symptoms help, but again, this could just be dementia.
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As others have said, diagnosis for type of dementia very important.
Lewy dementia delay meds are not necessarily interchangeable with Alz ones. Like aricept, good for Alz, negligible for Lewy. But Excelon good for LBD. Also other standard meds - Seroquel, Ativan - can have issues for LBD.

My mom had Lewy. Really having formal diagnosis & at what stage known, like others have said is oh so important for doing a care plan.
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My father in law developed Lewy Body dementia.
He was widowed 18mos prior, married 62yrs.
Always a nice, even tempered person. He began
seeing people and insects in his house. Graffiti
on the walls. Hospitalized, then AL, then to memory
care. He was only there 8 months. Steady decline.
Hospice at the end. He passed peacefully. He did
have moments of anger but for the most part he
was subdued. The entire staff, from rn, cna, kitchen,
etc. we're absolutely wonderful. The hospice
people could not have been kinder or more
helpful. He and mil had a trust in place and while
my sil had lots of paperwork to contend with all
went smoothly as they had wanted. We are indebted
to them for their forethought in taking care of their
finances. My sister in law was wonderful through
all. No quibbling or hurt feelings amongst the 3 sibs.
Barney is greatly missed. Wishing you strength through
the hard times to come.
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My mom has been diagnosed with Lewy Body Dementia. Grandma1954 is absolutely correct in saying that it should be formally diagnosed. I would be happy to share my experiences in carrying for mom but I'd like to first ask:

In what way has his health gone downhill?

What is it that leads you to think he might have Lewy Body?
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He should be formally diagnosed.
Effects of Lewy Body Dementia can be difficult to treat with some of the typical medications.
Rather than doing on line research you should get an appointment with a neurologist that can pinpoint exactly what the diagnosis is.
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