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I've noticed significant cognitive decline in my 86 year old mother, but have struggled with what to call it. We have not had her tested for dementia, because other than general age related cognitive impairment I didn't see evidence of classic Alzheimer's, which is what the large majority of forums and experts talk about. (also, when it comes to getting tested for geriatric/memory issues, Mother doesn't like to go see "those" doctors because "there's nothing wrong with me.") We scheduled an appointment for her, but she refused to go saying she did't feel well enough that day.

I'm not a doctor and realize that diagnosing via reading internet articles is not scientific proof. However, my nursing school daughter came home from class last week and says "I think mamaw has dementia." I asked why and she said "we studied that her slumping over to one side when she sits is a symptom of Lewy Body Dementia." I began reading up on the symptoms, and was astounded at the similarities with my mothers symptoms. She shuffles when she walks rather than picking her feet up. (called the Lewy Body Shuffle.) She stoops over and is a fall risk. We took her back to her home a few weeks ago to move some furniture. She slept in her bed, which is mecca to her. Woke up the next morning, stood up and said "I don't know where I am." Took her all day to get her bearings. She called me at 12:30 a.m. this week to tell me the roof was leaking in her assisted living facility room and the floor and her bedspread was soaked. I checked it out. No sign of leaking. Carpet was bone dry. But the left pair of each of mother's house shoes were wet, along with her left pants legs. She denies wetting herself, going so far to tell the nurse to leave her room and not come back if she was going to keep telling her she's peeing on herself. My mother tells us that water is dripping on her face while she sleeps; another thing I investigated and found no evidence. Any spot on the carpet where a footprint has made an imprint mark on the carpet is a "wet spot" to her. "See there, that spot is wet!!" I'll feel of it and it will be bone dry. The only spot on the floor that's wet is near where she's been sitting. Apparently, loss of bladder control can be a symptom of Lewy Body Dementia, as can be delusion (she can go back home and live alone) and hallucinations (water dripping on her face when it rains in her room.) Also, unlike Alzheimers, she knows who were are most of the time. She remembers my name, my wife's name, her grandkids names, and remembers pretty much where she is. She does tend to hide things then cook up a good conspiracy about how it went missing. (losing the key to her lock box is the latest stop what your doing and come fix this emergency.) But just when you think it's typical old person not remembering where she put her keys, she'll drop a real doozy. Like telling me a cute thing one of my kids did with my daddy when she was little. As mother related the story for the 1,000th time, I became my daddy in her telling of it...."you were over in the garden watering the plants and Rachel said what that man doing mamaw?" That man was my father, who has been dead 14 years. Yet she told me the story like I was my father. Weird. She loves to go to church services at her facility. Called me tonight and said "something's wrong with my memory. I forgot today is Sunday."

Something is definitely going on and its getting worse. Depression, apathy, agitation, everything is an immediate emergency, Having some days when she's spot on with what's going on. Other days when she stares at nothing with a blank expression slooped over. Always a social butterfly, she's becoming a recluse living in her own delusional world where she's not the problem, everybody else's the problem. "That nurse thinks I have a urinary tract infection. I don't have a urinary tract infection, and I told her never to come back to my room!" The Lewy Body Shuffle with her legs, the blank expression that never changes, imagining things that aren't happening, but thinking they are very real, remembering who we are on one day and that the grandkids are in school or work and remembering how her dog is doing, then one day she doesn't say much, forgets she's in her bedroom, calls me at 12:24 a.m. to report a nonexistent roof leak, or doesn't know it's Sunday. All these symptoms point to something different than alzheimers. It just seems that all the information out there is on alzheimers, with a tip of the hat to dementia. Yet, when in doubt they seem to knee jerk call everything Alzheimers when I don't think that's what my mother is dealing with. Any constructive advice would be appreciated.

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My mom was diagnosed with Lewey Body Dementia and it's very hard at times to deal with.She has good days and bad days but her gait is way off and she has fallen a lot breaking bones.The best advice I can give is to just love them unconditionally because they will say things that are hurtful.Be patient because it can be a long process.Its been almost 2years since I started taking care of my mom.First sign of a UTI..have treated..it really effects their mind.Its a very sad disease.
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Sounds like the symptoms my husband exhibits and he was diagnosed with Lewy Body Dementia. If your mom happens to be diagnosed with this disease, be prepared for the ROLLERCOASTER ride of your life. I have found this disease to be so cruel, you never know what will happen from day to the next. I have seen my husband unresponsive where medical staff could not wake him up, by that night, on his own, he was alert and talking. If it had not been for the monitors letting us know he was still breathing, my husband looked dead. Prayers going up for you and your family, because this is not an easy journey. Strength, courage and comfort to you and your family.
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Oh my, i'm wondering if my mom has Lewy Body
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jeannegibbs May 2, 2018
A place your can get more information, Bella, is the Lewy Body Dementia Association website, LBDA.org
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Alzheimers is simply one of the over 60 dementias. They all look a little different in the beginning but end in the same place stage seven bedridden. There are very few drugs that work at all for any dementia for some it can slow the progress but for many it adds to their symptoms. Seeing A geriatric doctor is your best bet, but there really isn’t anything you can take to change Or heal a person who has dementia. So pressing her to go to the doctor umless she has a UTI shouldn’t be a large concern. Checking for a UTI can also be done right there at the assisted-living.
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I believe my mom has Lewy Body dementia as well even though they diagnosed her with alzheimers. She has every symptom of lewy body. Started years ago with hallucinations (seeing animals and babies where there were none) shuffling walk, tremors, falling, orthostatic hypertension, constipation, depth perception problems. She has trouble lifting her leg to start up the steps, cannot lift her legs to get into bed, very withdrawn socially (and she was the most social person before this), depression. Yet she knows who everyone is. She will mix up family members occasionally telling me my sister is my mom but she knows her name. Can't seem to make a decision. Has trouble concentrating.
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jeannegibbs May 2, 2018
Lewy Body is among the most misdiagnosed chronic conditions out there! Alzheimer's and Parkinson's are most commonly diagnosed at first. Doctor's don't like self-diagnosing from the internet, but you really do have enough solid evidence to question the diagnosis your mom has been given. Nineeklj, discuss it with the diagnosing doctor, and if you aren't getting satisfaction, find a neurologist with experience with Lewy Body.

It is especially telling that your mom's problems started with hallucinations. That is often the first symptom people notice with LBD, while it usually comes much later in ALZ.
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Jeannegibbs, with Lewy Body Dementia, are the hallucinations more visual or auditory? My mom has auditory hallucinations and paranoia related to the things she hears. Sometimes she'll hear one of my kids talking and thinks she's hearing voices talking about her, that kind of thing. Other times, she thinks she hears people plotting to break in and kidnap her or steal things. The neurologist said with LBD the hallucinations were usually visual, but not always. Just wondering what your experience has been. We're trying to get an accurate diagnosis so we can know what the best treatment is. She went into a diabetic coma about 7 years ago and was in ICU for several days on dialysis. Her sugar was more than 1200. It seems like that's when the psychotic symptoms started. MRI shows no evidence of major changes, other than some minor ones they say could be related to diabetes. She has been diagnosed with paranoid schizophrenia and treated for that for years, but it seems like some of the psych drugs have just made her worse. In the past couple of years, muscle stiffness, muscle spasms, and movement problems have gotten worse. She can still perform ADLs, but has difficulty brushing her teeth and doing some things that require fine motor skills. Also no arm swing when she walks, and twitching and spasms in her leg. The neurologist said for her to cease the antipsychotic drug she was on for 6 months to see if her Parkinson like symptoms got better (maybe drug induced if that is the case) but if not she could have something like true Parkinson's or LBD. Complicating matters is that both Parkinson's and mental illness run on her dad's side of the family (he passed in his 60s from Parkinson's). She is on Cogentin now and the muscle spasms are improved somewhat but still there. Sometimes she will have this funny jerking in her leg where she's moving it back and forth, almost like restless legs or something but she says it twitches and tenses up. She too has some days where she's really good and other days where it seems like her anxiety level and paranoia is worse, or she forgets what day it is, or me giving her morning insulin (she'll say we haven't done that yet or that we already have when we haven't), and has trouble finding the word for some things, etc.
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jeannegibbs May 2, 2018
Frazzled, my husband's hallucinations were visual. That is most common. But auditory hallucinations can also occur.

Sounds like the neurologist is looking at various possibilities, which is a good thing. Especially with your mom's health history it is smart not to jump to conclusions.
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Does her facility have visiting doctors? Do they have a geriatric psychiatrist or a neurologist that makes house calls there? That would be easier than getting her out for an appointment. I agree that she should be evaluated.

My husband had Lewy Body Dementia. What you describe sounds like your mother might have it. Definitely bring it up with the doctor. It would be good to prepare a brief statement to get to the doctor before the appointment, listing specific behaviors that concern you. Doing that in front of your mother can be difficult.

Hallucinations can occur in ALZ, but generally they tend to be in later stages. They are often a very early symptom in LBD.

Memory is often not the primary symptom in LBD, though it is impaired. People with LBD typically don't lose the memory of people. My husband knew everyone in his life up to the day he died. He didn't remember names of "new" people in his life, such as a hospice nurse, but he did know who they were and why they were there.

Cognitive ability fluctuates. That is a core criteria for diagnosis. The cognition levels can vary from day to day or even within a day. This leads people who don't understand the disease to think the person might be faking it. No. They really can't do this task this afternoon that they could do this morning. My husband and I played a board game; he was surprisingly good at it on his good days. Some days I could tell within a few minutes that he wasn't up to the game. I'd say, "Ya know, I'm not feeling like playing this right now. Would you mind if we set it aside for now?" He never argued about that. And he would be really good at it again the next time we played.

Loss of depth perception is common in LBD. It, too, can come and go. Thresholds can seem very high. The change between wood flooring in one room and tile in the next can cause confusion. My husband couldn't figure out how to get into bed so that his head hasn't up against the headboard or his feet past the foot board. Thinking the floor is wet seems to be related to depth perception.

"Lewy Bodies" are teeny balls of protein in the brain. They are found in both Dementia with Lewy Bodies, and also Parkinson's Disease. Persons with LBD have Parkinsonisms, such as shuffling gait, the Lewy lean, rigidity, hand tremors, and others. These seem to fluctuate, too. Some days my husband could write out a check for his golf, and some days he could not write legibly at all. Some days his hands shook, but most days they did not.

Confusion about location is common. (I'm not sure if that is common in ALZ, too.) My husband kept thinking our home was a train station, a bus terminal, and most often an hotel. He kept wanting to go home. He was home!

There are some differences in how the LBD brain reacts to various drugs, and for that reason it is good to have a specific diagnosis. Aricept is generally more effective in LBD than in ALZ, even though that drug was developed for ALZ. Haldol should absolutely NOT be given to someone with LBD, but may be tolerated in ALZ.

Best wishes to you as you help your mother with this. Do come back and update us on your progress.
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Thanks for your counsel. I like the idea of promising to take her out to eat, and popping by the doctor on the way.
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Sounds like she needs to see a neurologist. They may order an MRI to see if there are any brain changes that can help make a diagnosis. My mom is young (56) but has had some physical and cognitive symptoms. MRI didn't show any changes, which neurologist explained that with Parkinson's or Lewy Body Dementia they may not. I'm not sure about with Alzheimer's. But would probably show something if it was due to a stroke, etc. The neurologist will do a physical and cognitive assessment as well. I understand having a hard time getting them to go to their appointments though, I've had that problem too. Maybe offer to take her out to eat the day of her appt and just "happen" to stop by the doctor's office?
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