Any advice for dealing with Grandfather with LBD?

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My Grandfather was diagnosed with LBD, I live with my grandparents. All started about 3 years ago, he would wake up during the night almost every hour accusing my grandmother of doing stuff to him, so she started sleeping alone. Now, she has a device to make his bed shake and give him shocks to his feet, I guess he really feels this things due to his illness but he is very persistent with this story, he is very agitated, yells and his eyes are wide open when he has his episodes, he wants her to stop with this but no matter what I do, he is 100% convinced. Since he doesn't have anything against me, I try to be a mediator but it's slowly getting to me and my grandmother loses her calm by being accused of that and other things, such as doing drugs.


This is getting to be a daily issue, it wasn't so frequent in the beginning. Is this constant aggressive behaviour common in LBD patients? Are they usually this persistent with this confabulations? Any advice on how to deal with him?


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There are many forms of dementia. With cognitive decline, many times behaviors can be unpredictable, as well as dangerous, to the person and to their caregivers. Everybody responds to situations and to medications differently. Focus on the safety and the comfort of your loved one. What he says and what he does, should be measured in terms of safety for him, and for his caregivers. The content of false information and negativity, are only symptoms, and not the actual problem. There are medications that lessen the affects of severe depression, aggression, pain, and "perceived" discomfort. With the elderly, medications are used with precaution. With advanced age, consider the quality of life, rather than the quantity.
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Thank you so much for taking time to answer to my question, i learned a few things that i will apply. Yes Eyerishlass, you're right, he was diagnosed with LBD and polyneuropathy, me and my aunt talked to his doctor and she changed his medication. When he goes to the doctor with my grandmother he doesn't like her to tell his symptoms because he is affraid to be considered crazy and to go to a care home, he is very paranoid about it.
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Nursesforever has given a good description of some cases of LBD. From my personal experience and from discussions with a support group for caregivers of persons with LBD, I can tell you that description does not apply to everyone who has it.

My husband, Coy, had LBD, with symptoms apparent for about 10 years. The LBD was confirmed by autopsy. The tiny bodies of misfolded protein were very diffuse -- spread throughout the brain. He was treated by a researcher/neurologist at Mayo Clinic.

Once when he was hospitalized the nurse assigned to him gasped when she read that he had LBD. "That's the one where they get violent, right?" I told her that some people with LBD did have behavioral problems, including belligerence and violence, but that Coy did not. She came and saw me when he was discharged. She said, "I'm so glad I got to work with him for several days. Coy is a real sweetheart, and now I know that not all LBD patients are violent!"

Those "bodies" don't spread out in a predictable pattern, so there are no identifiable stages as there are in ALZ. But they do tend to cause behavioral issues very early on. While both ALZ and LBD often involve hallucinations, in ALZ they tend to be late in the disease; in LBD they may be the first noticeable symptom. The part of the brain that recognizes faces tends to be spared in LBD -- Coy knew everyone right to his dying day.

A diagnostic characteristic of LBD is great fluctuations. There are good days and not-so-good days; near-normal hours and horrid hours.

There is less death of brain cells in LBD than in ALZ and some other types of dementia, and therefore drugs may have more to work with. It may be worthwhile working harder on find useful medications for persons with LBD, if the doctor is highly familiar with the disease. There are no medications for ANY type of dementia that slow the progress. But non-dementia drugs such as for anxiety may have a better chance of working with the greater number of living cells in LBD.

LBD may develop very quickly. One of my support group's loved ones died within 2 years of diagnosis. My husband lived about 10 years. I think the average is 6 to 8 (which is less than ALZ, I believe.)
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This is kind of out there but maybe your grandfather is having burning and tingling in his feet at night and the LBD is causing him to attribute it to your grandmother. Neuropathy can cause burning and tingling in the feet as can diabetes. People with these conditions often take medication to stop the sensations.
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jeannegibbs Jun 5, 2018
Lass, I think your theory that the sensations in his feet and accusations against GM may very well be from two different causes. The accusations are most likely the paranoia of dementia, but the burning and tingling may be from a number of different causes. Definitely the situation needs to be discussed with his doctors!
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LBD, or Lewey-Body Disease is a disease of the brain where you grow these Lewey-bodies in your brain. It is like the worst of Alzheimers mixed with the worst of Parkinsons. It affects not just your brain, but your physical functioning as well. Normally, Alzheimers affects just your mind first, then your body, normally, Parkinsons affects your body first and then your mind. With LBD, everything is affected at once. People that have it become very severely demented and can become very aggressive. Visual hallucinations are very common. People act out their dreams in their sleep and can thrash around in bed and actually fall out of bed. You need to find a doctor who treats these kind of patients frequently, because one med will work for one patient and not another, and you need someone who knows all the options and is willing to keep trying to help you. I think it is the worst thing I see with nursing, because there are so few good treatments for it. It can progress very rapidly and in a way that is a blessing, because it causes a lot of suffering, both for the patient and their families. Prayers for strength for you and your mother during the hard times to come.
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What is LBD?
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jeannegibbs, I was wondering what medication your husband takes that manages the RBD? My husband has terrible hallucinations and dreams but nothing he takes seems to work. I would be so happy to be able to help him get a better night sleep.
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jeannegibbs Jun 5, 2018
Sandy, my husband was diagnosed at the sleep clinic that first identified RBD. The go-to medication for it at that time was klonopin (clonazepam) in small doses. It worked! But the condition has been studied now for 30+ years, and there may well be other treatments. Talk to his doctor specifically about RBD. Is your husband seeing a specialist in LBD?
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There is a particular sleep disorder very common in LBD. In fact it often starts years before the other dementia symptoms start. It is REM sleep Behavior Disorder (RBD) and it involves a consistent pattern to dreams and acting them out (such as legs running, fist punching, etc.) Once we got a diagnosis at a sleep clinic, my husband's was completely managed with a medication. Who diagnosed Grandfather with LBD? Has anyone discussed these night problems with that doctor?

Are the accusations of Grandmother limited to the nighttime episodes, or do they occur during the day, too? Paranoia is common in dementia, and can be very challenging to deal with. This should also be discussed with the doctor.

If at all possible, don't argue with the paranoia, and help GM stay calm. "Oh Gramps, it must scare you and worry you to think that Gram is using drugs! You must have seen her take her vitamins and blood pressure medicine. She doesn't take any drugs that you need to be concerned about. She takes care of herself."

"I am so sorry, Gramps, that you are having problems with your feet at night. That must be very disturbing. It isn't anything Gram is doing -- it goes with the diagnosis Dr. Smith gave you. I think it helps to keep your feet warm, so let's try some socks for you. And we'll talk to the doctor about this symptom."

Don't argue that he isn't getting shocks or he didn't see GM take drugs. Let him know you believe him and are sympathetic. Give him some other explanation for what is happening.

Very definitely talk to the dementia doctor about these symptoms.
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