What is "Lewy Body Dementia"?

http://www.lbda.org/node/7

http://www.lbda.org/content/symptoms

A good place to start to understand what LBD is

Dear StressedMom, because your question is involved and Lewy Body Dementia is very involved, I'm sending you straight to the Lewy Body Dementia site. www.lbda.org/content/lbd-spectrum
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

To marsha530 and Mamoogins, I will lookover and study both sites. I need to get more informed on this issue. I appreciate your time here. Thank you both. Will Keep you posted ....Godbless and Happy Holidays to ALL =D!

My mom probably has Lewy. I say probably because only until an autopsy is done, will Lewy be able to be definitely identified based on the Lewy deposits on their brain. Lewy are plaque & protein deposits within the brain which affects their cognitive ability. For me in dealing with my mom, LBD is very VERY different in it's early and long middle stages than what ALZ does. Lewy is the 2nd most common of the dementia's. Most of the really good Lewy info will be on the UK sites (British) as in the US the info is mainly all about ALZ.

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.

My mom has been to have a ct scan due to some lower back pain. Ct results shows "moderate fracture" according to the exact words of orth Dr. Restorative pt has been stopped. Mom has not done walking excersise since october31. Can anybody tell me what her legs are going to be like to walk again? MRI should be this week for results. Christmas is comming and she has been quiet about comming to my house. I know she wants to come. I don't have the heart to tell her it's risky since her legs have shown weakness to step on stairs to come in the house. I have plan b. Visiting her in the Nh and bringing food and family to gather to see her. This is stressing me out. My company do not want to e interrupted to take her back to Nh. I think I know what I should, I just need a good feeling of my choice and that I won't feel till Christmas day. Any ideas will be appreciated.
Merry Christmas and happy new year to all,
Equinox

I wanted to thank you all for the info, too. I first heard about Lewy Body dementia last week, and hadn't had a lot of time to look into it. Now, I think my dad definitely has these symptoms. He has Parkinson's diagnosis, he shuffles, he has detailed hallucinations of events that didn't really happen, and also hallucinations such as picking up a kitchen towel and believing it is his budget form, and picking up a mirror believing it was an apple he was just peeling. Misplaces things all the time and believes people are moving them or stealing.

My question is, is it helpful to know that he could have LBD? Should I call his neurologist and suggest it? Right now his treatment involves from the neurologist involves Sinemet and another med he was recently prescribed, but I can't remember the name. Also a host of painkillers from his primary care dr because he is in chronic pain from arthritis.

I have spoken to his neurologist once. He noted my dad's shuffling, and knows that he has Parkinson's symptoms. I also brought up my dad's confusion and forgetfulness, but was uncomfortable directly talking about hallucinations right in front of my dad since that's distressing to him.

If you have a DPOA, I would definitely let the neurologist know about it. There are some medications out there, but one size does not fit all and some times they don't work at all; it totally depends on individual.
Due to his arthritis medications, coming from the primary physician, you'll want to make certain that your father doesn't wind up with polypharmacy. I keep a list of all of my fathers medications, the dosage, when they were diagnosed, by whom and how much or when he was released from one Rx and placed on another. With over 30 meds, I have to keep track of it all. It's easily done with either microsoft excel, Word or anything that works for you, but definitely keep it on the computer and update it when something changes, i.e., increases, decreases, new, etc. and make sure you have a copy on you at all times.
Wishing you the best!
Suzanne

Thanks Mamoogins.

I don't have DPOA, no one does. But I don't think it's a violation of any laws for a dr to simply listen to me describe symptoms of their patient. It does make it a lot more difficult to compile a spreadsheet of meds though, since I can't just call up and have them send me a list. I will probably have to work on adding them by looking at all of the prescription bottles that I can find.

Best of luck. I wish you well.
S.

Lewy Body Dementia is an umbrella term for two dementias. There is Dementia with Lewy Bodies and Parkinson's Disease with Dementia. A person with Parkinson's disease has an over 50% chance of developing PDD as they age.

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.

What I've found is that most MD's are totally unprepared to deal with dementia and the reality of how to manage this disease. Here's my thoughts.....most of medicine is about "curing" the disease and prescribing Rx's to make that happen. Medical school is all about that type of training and approach. For dementia, that doesn't work as dementia is a terminal disease. Yes, there are Rx's (Exelon, Aricept) and treatments (like PT & OT) that can slow it down but it is terminal. No reversal.

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.

stressedmom, you have gotten some excellent information here. Seven stages have been identified for how Alzheimer's progresses. Since a little more than half of all dementia cases are thought to be Alzheimer's Disease (AD) and since it has gotten a lot of press and publicity, we tend to think of that we've heard about AD applies to all dementia. Not so. For example, LBD does not progress in recognizable stages. It may progress from mild to moderate to severe, but there are wide fluctuations in every phase. There is no "stage 4" or "stage 6" in LBD.

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.

igloo572, thanks for all your informative input.

Do you mean geriatrician -- a medical doctor? I think maybe the terms geriatrician and gerontologist may be used differently in different locations. In any case I endorse your recommendation 100%. A medical doctor specializing in the care of elderly is essential when dementia is present. Ours was very happy to let my husband's dementia and sleep specialists control the treatment plan for his dementia while she handled the other chronic conditions (such as chf) and the day-to-day issues such as flu, gout, pneumonia. She was very knowledgeable about drug interactions and drugs to avoid in LBD. She, too, took hubby off all drugs to start with (except the dementia drugs) and gradually added most back in as observation warranted. She knows full well that she is often dealing with terminal conditions. She does not consider it a failure when a patient dies. Her goal is to enable them to have the best quality of life they can have while they are alive.

I can't say enough how helpful it is to have a doctor with that kind of attitude. Switching to a geriatrician when a loved one is old and has medical needs is very worthwhile. And it is comparable to taking a child to a pediatrician. Different stages of life require different medical approaches.

Thanks for sharing your experiences, Igloo.

In all types of dementia, these moments are called, "a moment of senility." I just read a court case where a will had been changed, in a very bad way and the judge ordered that the individual, though in the 6th stage of dementia/ALZ had "a moment of senility" when the changes were made. He stated that because this does happen and he was not there, it could be proven that it did or did not happen and ruled in favor of the person that got everything.
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.

Mom was diagnosed with Lewy Body 3 months ago. She is 95 and has always been quick witted and right on the money. She had her aches and pains but always continued to keep herself busy so she wouldn't "think about her pain". Then suddenly she said she felt something was wrong in her brain, she was forgetting too much. Hallucenations became worse, seeing mice then men breaking in, etc. and, she too was convinced of what she saw . I had to put her in the NH, and she seemed to make great improvement. Now her rehab is finished and she has come as far as she can. She walks with a walker now, but most of the time they have her in a wheel chair. She has the alarm on her because they dont' want her to get up and go to the bathroom without assistance, for fear of her falling. Mom too goes back and forth from completely normal to a terrified woman thinking everyone at the nursing home is going to kill her (and me). I went online to: lbda.org. It is a great site to go to. I was encouraged to get the book. "A Caregiver's Guilde to Lewy Body Dementia" By Helen Buell Whitworth and James Whitwoth. I bought it on Amazon, and it was the best investment I could make. It answers so many questions, plus I have been able to see when these symptoms started appearing. Mom always experienced nighmares, but now I see how over the last 7 or so years, much of her behavior has been due to Lewy Body. It wasn't until just 3 mos ago when she was "unresponsive" that this was all discovered. It really is a roller coaster, but having all of you on this site to communicate with has been a Godsend. Thank you for all of your posts.
LewySavvy: I feel so guilty having to leave her at the nursing home. I've had mom living with my 32 yrs. When I get her out of the nursing home and bring her home for a visit she gets so calm. Then after I take her back in a day or two she''s back to the horror stories and the parnoia. My sister never cared for my mom, and now she is saying she thinks if I bring her home she would not be as scared and frightened. I don't think its going to matter because like you said LBD symptoms fluctuate. When she is having a normal day, she understands that she needs therapy to get stronger, because she knows I can't care for her like this by myself. I know she is striving to get back to her independant self. She always wants to help me (with dishes, laundry, etc), but now some days she is so wobbly it scares me to think if she was home, she would think she is capable to do what she use to do, and they she would probably fall or something. Do you think it would be wise to bring her back home?

Nanieine
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

Equinox: The dr. at the nursing home is the one who diagnosed mom. Everything happened so quickly (it really didn't, but it seemed like it did), that we really thought it was an infection. After the dr. said Lewy Body, I went online to research it. I would mention it at the monthly care conference. The more I'm reading, the more I'm finding out alot of dr.'s and even nursing staff are not well informed. I think the most important thing is the medication. If they have your mom on meds for ALZ, they can actually do more harm than good for LBD patients. I'm not kidding, if you can get the book by Helen & James Whitworth it will really help you. It helped me understand so much more. Mom's original dr. who specializes in caring for the elderly told me it was just "dementia", and that my mom was too old for Lewy Body. But after the dr. at the NH diagnosed her, and reading what I'm reading, I'm convinced it's LBD. . This is one of the reasons why I've found this site so helpful. You're able to see what others have experienced and which meds have been working for their LBD relatives. One thing you'll notice, not everyone has all of the symptoms, and each person is different, but you sure see similiar patterns. Let me know what happens at the conference.

Mamoogins: You are so right. I asked my mom to please put everything in writing after my dad died. My sis took over (she had dad make her the executor of his will, which apparently meant she was the only one who had access to his business account and personal checking account). True colors really came out on that one! Mom couldn't believe it was her own child doing what she was doing. Our parents were split (not divorced) over 25 years but dad always financially cared for mom. He just wanted his "freedom" & his women, and mom couldn't have cared less about remarrying. Her focus was on her family. Their arrangement worked for them. He was a womanizer, but at least he left CD's to my mom so she was taken care of after he died. Being the baby, I was the one who stuck by her side and cared for her. I always knew what her wishes were but it wasn't until I saw my sister's lack of respect and desire for dad's money that I asked mom to put what she wanted in writing. I could see that being the older sibling, she felt she had the right to do things her way. I'm so glad mom agreed to do that. She made me her POA and incase I was not capable, my daughter would be next in line. Last if both my daughter and I couldn't fulfill our duties, then my sister would be POA. When we had to put mom in the NH, sis saw mom's POA and talk about mad. She couldn't believe my mom put my daughter above her! That's because my mom trusts my daughter. Then my best friend overheard sis talking to mom saing: It would be good for you to put me in charge of everything since she (meaning me) is so overburdened with everything. My mom still had enough of her senses to say: You just leave everything the way it is, that's the way I want it, and "she" & her daughter are the the ones I want taking care of things. You go mom, and thank you for getting things in writing! At least this is one less stressful thing for me to worry about.

Nanienie,
My mom has been describing many things that seem so real to her. She says that her roommate will die January 17. Then yesterday she mentioned that the resident, who she thinks is a man, wanted her to dance and neither of them can dance for new years Then another day she asked me to call her bro because her sister told her that he had fallen. Her sister said she never told her that. I called her bro and he did fall. Is this anythinthing you have experienced.?
Thank you
Equinox

Nanieine:
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

Equinos: Nothing like that has happened. The only thing is my mom keeps worrying about us when we visit. When her bro came to see her all she did after he left was worry about him. She was afraid he didn't get home safe. So I called and my aunt said he was home. I let my aunt talk to my mom and then mom was fine. She keeps thinking something happened to me, and when she sees me she keeps saying how happy she is because she thought she would never see me again. Maybe your mom heard the date Jan 17 from someone talking at the NH or on tv. Then her brain is doing it's thing and combining the date with her roomate. I really don't know. Can't explain her brother's fall either.

LewySavvy: Thanks for the reminders. My intelligent side knows everything you are saying is right. It's my emotional side that I need to get on track. You are so right about my sis. My cousins have all told me not to let her make me feel guilty. They say if anyone should be guilty it should be her , since it is only now that mom is in a NH that she is visiting regularly (even though I have to hear how she spends $18 a round trip on gas each time she visits)...whatever.
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!

Lewy Body Dementia is the second most common dementia. It is frequently misdiagnosed three or more times as Alzheimer's or dementia NOS (not otherwise specified). It is not unusual to see LBD in conjunction with Parkinson's, although the connection is not fully understood. In general if LBD is diagnosed first and the PD, the diagnosis is LBD with PD. If PD is diagnosed first and then LBD, it is PD with LBD as the secondary.
Hallmark features used to differentiate between Alzheimer's and Lewy Body is LBD persons tend to have vivid hallucination behavior. These hallucinations frequently have children or animals in them and the person with LBD does not appear frightened by the hallucination. The person with LBD also has more accusatory behavior, typically involving infidelity on the part of the spouse. They may accuse the spouse for example of having a affair with the doctor, yard guy, neighbor, pastor, etc. Executive function and decision making skills are impacted early on.