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imho LBD enables them to be highly functional in their ADL for years and years and perhaps even decades so from the outside world they seem just amazing competent for being so elderly. For family, the fact they are often very old and still able to do and function on their own makes it hard to deal with Lewy as the changes are subtle and more episodic for which there can seem to be a simple excuse for what happened. My mom is mid90's and has only been in a NH for a couple of years now and she still can do all her ADL's on a good day. For her LBD is episodic and when that happens she is pretty well totally dependent on others to do for her from potty to eating. Her episodes now are closer and closer in time but she is on Exelon patch so they are not so scary intense for her. On retrospect my mom had dementia related paranoia, language issues & difficulty with familiar tasks since 2005. To this day on a good day, she appears lucid, knows who people are, can carry on conversations, get dressed and potty on her own most of the time, she can be ambulatory with just a walker although she now prefers a wheelchair. She’s in her 90’s too. But if you talk with her past the 2 – 3 minute conversation most people do with the elderly, it is scary …… animals appear in the corner, gypsy children live in the building, amputee roommate stole her TV, poison in the rice, friend from old IL comes over to steal shoes. She has the LBD shuffle (where they can't lift their legs to walk), the slight tremor similar to PD and the nothing but fun hallucinations (usually animals & not threatening) and the spacial hallucinations (like seeing the carpeted floor as cobblestones) which makes walking a total challenge.
With my mom misplacing things was/is a big issue. When she was in IL, she would hide stuff in flashlights, then go into a fury that she had been robbed and would call the police and file robbery reports. Paranoia got to the point where she called a nephew to take her to the bank so she could withdraw all her money as “they were trying to become her”. She would cut off the tops of empty Kleenex boxes and nest them within each other BUT she would hide “important” stuff within the layers. Then when she couldn’t find the $, travelers checks or family picture, she would call the police. When she went to lunch or an activity, “they” would go to her apt (when in IL) or to her room (at NH now) and would use it as an office or hold meetings there because her room has the “special light”. Spooky!
Mom totally believes this is happening. There is no way to convince her that it is
not.What I beleive is that the protein deposit, that is Lewy, triggers hallucination or false belief and the bigger deposit the more intense the hallucination. But she still totally know who people are & where we are in time (like Christmas is next week).
Medical management of LBD needs to be very different than for ALZ. Many of the antidepressant or other mood stabilizer Rx's are VERY dangerous for LBD in that they can make the anxiety and mood swings even worse. So their MD's need to be trained in how to deal with LBD. My mom is with a medical school gerontology practice which is most fortunate and she is on Remeron which is an old-school anti anxiety med, Exelon patch and vertigo meds. There is no one set pattern for LBD just as there is no one set pattern for ALZ. Good luck.
This is a very good site that gives you much of the information you require. Lewy Body Dementia is a mixture of dementia's and presents itself in many different ways, but of the sure signs is shaking, as in Parkinson's disease.
She can be diagnosed with LBD, but the only true way to tell, is an autopsy.
They answer to your question is yes. The LBD can show up anytime during the various stages (generally earlier, since she is already in stage 6), but individuals can have a mix of stages too and not show all the signs of dementia.
Many individuals start out with regular dementia and it leads into AD, which is often associated with LBD.
I hope this answers your question.
Best of luck,
Suzanne
Lewy bodies are also the cause of Parkinson's disease, just in a different area of the brain.
Early symptoms of DLB can be sleep disorders, hallucinations, illusions, and paranoia. These can start years before any cognitive problems.
LBD is different from Alzheimer's in that their cognitive problems are mostly associated with executive tasks, i.e., forgetting how to do things. Whereas, Alz is mostly losing the ability to store memories in the long-term memory.
LBD symptoms fluctuate, so that sometimes the person is very alert, can carry on intelligent conversations, and appear 'normal' to most people. But then, their cognition can take a nosedive into total confusion. Sometime later, they can be back to 'normal' again. These periods can start out being long; months, weeks or days. As the disease worsens, these periods can shrink to hours or even minutes.
For my mom, her old internal medicine MD approach was to prescribe a new drug for whatever her latest complaint or concern was. At the time she went to see a gerontologist, she had over a dz active prescriptions. She saw a gerontologist because it was required by the ortho surgeon for her to have rotocuff repair surgery. Had to be gerontologist and not a internist or family doctor too. Ortho surgeon was affliated with medical school and that is how she got into the med school geronotology program. They did a whole work-up, all 3 main dementia tests, MRI etc to get a baseline view of where she was. One of the main things they did was to take her off of all her many, many med's. Most of these she had to be weaned off of too and took about 8 months for all to clear her system. Polypharmacy! She got down to 3 Rx's. In meeting with her gerontology MD's it seemed their opinion was was almost all of their new patients have this same issue and what makes it especialy difficult is that because of their dementia - even in the early stages- they just can't take the med's correctly. So the needed level of a drug gets on a yoyo and often makes things worse. For those that have a chronic disease, like diabetes or a cancer, you really need to have focused approach to their care plan and a gerontology group can be that. They do all the referrals and it all gets back to them and the referral doc's understand the situation that dementia presents. As another has said on this site, a gerontologist for those with older w/dementia is like having a pediatrician for your child. Good luck.
I don't think anybody knows why, but when there are protein deposits (Lewy bodies) in the brain the body in particularly sensitive to some anti-psychotic medications and those drugs should not be risked. They can make matters worse or even cause death! Also since there is less brain cell death in LBD than in AD certain drugs can be more effective. So it is really important and helpful to have a specific diagnosis as to what type of dementia a person has when coming up with a treatment plan. I suggest sharing all observations of symptoms with the treating physician.
Both AD and LBD can include hallucinations. In LBD they may be one of the first symptoms, and they can last for the duration of the disease, or they can come and go. They tend to be benign and not frightening to the patient. (Not always, but generally.) In AD they occur later in the disease and often are very frightening.
LDB patients tend not to lose the ability to recognize people. My husband knew all of his visitors right up to the end, and this is what other people in my support group report.
The Lewy body clumps in LBD cause different symptoms than the tangles and plaques cause in AD. But brain autopsies over the last decade have shown than many brains have clumps AND plaques and tangles or evidence of other kinds of dementia. So diagnosis is not straight-forward. A person can have more than one type of dementia concurrently.
Best wishes to you as you give care to your mil, whatever type of dementia she may have.
I bring this to your attention because it's true. Another judge might have ruled otherwise. For those of you that have a lot at stake, do yourself and parents a favor while they are still in their right frame of mind and hire yourself an attorney that deals in estates and various other areas to assure that all of your parents affairs are in order, without any possible loop holes.
I have seen this happen 2 times now.
It's important that "all of us" get our financial house in order; we never know when our last tomorrow may be. Do it for the sake of your children.
S.
I read your post and I thought of my mom to the T. You discribed my mom regarding the Lewy Dementia. Who should I ask if my mom has this? I have heard of it, but not much has been mention about this. Is it by symptoms you described.
I am going for a monthly care conference, and I should bring it up.
Thank you
Equinox
There are two main issues to consider when you ponder whether to keep a loved one in a nursing home or bring her back home. The first is how they will do at home. Do they need services that aren't available at home, such as 24 hour vigilance or heavy lifting? The second is the ability and health of you, the caregiver. More often than not THIS is the deciding factor. And of course, when it is, the caregiver often feels guilty. In addition, your sister is laying more guilt on you. If you can't do what needs to be done AND maintain your own health, then even though your mother would be happier at home, she won't be safe there. Would you willingly leave a loved one with someone who could only do part of the job? Or whose own illness prevented them from being as diligent as necessary? Who risked a damaged back from lifting too much? Whose nerves were so frayed that they had no patience? You can actually be a very good caregiver to your mother in a care facility--better in fact than when you’re overwhelmed with the caregiving load at home.
Another thought; would your sister be willing to pay for 24/7 caregivers to assist you with your mother’s care at home?
God Bless
I do know I wouldn't be able to give mom the care she needs without emotionally breaking again. Plus the way mom's personality is,I know she would still try to get up on her own at home. She proved that this weekend when I brought her home for a visit. Thank goodness I have a daughter who is level headed! She had to remind me yesterday how my mom was acting the last 6 months before we put her in the NH. My daughter was right on the money when she said: Mom, you're the type of person who once they get a break from a situation forgets all the bad and remembers only the good. Then she reminded me of how difficult it was getting for me to take care of mom by myself Plus, mom has never been one to listen to me. If she felt good she would attempt anything! It was only when she was feeling weak and sick that she would sit down and rest! Oh, and as far as sis....PAY for a caregiver? Not. She hasn't had to worry about mom's care for the last 32 years, so why would she start now? Ah, but that's ok. I do know I am doing all I can for my mom and I know right now this is the best route to take. I need to push the guilt aside, and remember how I have cared for my mom, and how much my mom has always told me how much she loves me and how she doesn't know what she would have ever done without me. Many times she has told me if my sis would have been her only child, she'd probably be dead by now. I know I've nursed her back to health many, many times. Maybe that's why this bothers me so much....this time there is nothing I can do to stop this disease. This time I can't fix it. I just need to accept it, and continue caring for my mom as best as I can. Thank you for reminding me of that!
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