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I looked this up for you because I wasn't sure, myself.
"Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.
Some individuals will start out with a memory or cognitive disorder that may resemble Alzheimer’s disease, but over time two or more distinctive features become apparent leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB). Symptoms that differentiate it from Alzheimer’s include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede the dementia and other symptoms of LBD by decades.
Others will start out with a movement disorder leading to the diagnosis of Parkinson's disease and later develop dementia and other symptoms common in DLB.
Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB."
My husband has Lewy Body. With him, now that I look back there were times of confusion early and an inability to do tasks like pay the bills, but the first big symptom was the hallucinations and kind of night terrors when he would be wide awake convinced he had been kidnapped by Indians or his friend was drowning. Then other symptoms began like daytime hallucinations (mostly of the same people over and over or animals) and delusions (people with only one headlight are drug dealers) and obsessions (convinced he was a lottery winner). He has also gotten some Parkinson's symptoms like stiffness and difficulty walking or lifting his feet and balance issues. What is VERY IMPORTANT to remember is that LBD patients CANNOT TAKE old-fashioned anti-hallucination drugs (or they can develop symptoms like a sort of paralysis) AND they have very individual responses to medication and a very individual timeline of developing symptoms. If you think your LO has LBD, get a diagnosis and get drugs NOW (my husband is on Seroquel for hallucinations and Depakote for paranoia) as it might slow the progress of the disease. No cure, as with Alzheimer's but maybe a faster progression (5-7 years, I have read). RESEARCH and know what you are getting into, as many doctors do NOT know about this disease. (We had several try to prescribe things I KNEW he should not take.) Whichever the disease, good luck and get some outside help (support group, caregivers in the home, daycare, etc.)-- it helps a LOT.
I find it very interesting that Alzheimer and Lewy worked in the same German research facility for a time. (I have no idea if they ever collaborated.) What they learned about the brains of their research subjects and what subsequent researchers have built upon for a century is quite distinct pathologies. The disease named after Alzheimer is often described as having "tangles" in the brain. What Lewy discovered were clumps ("bodies") of protein. The pathologies are quite different, so it is not surprising that while both involve dementia the symptoms are not identical.
(And by the way, there is no rule that a given person can have only one kind of pathology. Some autopsies reveal both tangles and clumps, or characteristics of other dementias.)
Dementia with Lewy Bodies (DLB) generally involves elements of Parkinson's Disease. (Lewy was originally studying victims of Parkinson's.)
Both may include hallucinations. For DLB, visual hallucinations often come early in the disease, and may even be the first symptom that sends the person to see a doctor. Often they are benign and do not greatly disturb the patient. In Alzheimer's Disease (AD) they typically come much later, and they are more often frightenting. These are generalizations and certainly do not apply in every case!
AD progresses somewhat steadily and over a relatively predictable course of "stages." DLB is a roller coaster of ups and downs and is characterized by very noticable fluctuations in cognition. If you look up the stages of AD, don't expect them to apply to someone with DLB.
Both diseases involve memory loss, but the pattern is not the same and the progression is different. People often ask if my husbad (DLB) "still knows you." Yes, and he probably always will. All of the loved ones in my support group who have died knew their family right up to the end. It is AD where loss of recognition is much more apt to occur at some point.
In general, DLB is thought to progess faster than AD, but the rate of decline in each disease is so highly variable, I'm not sure how meaningful that statistic is. And I've also seen more recent studies that don't find much of a difference.
Because the pathology in the brain is different, the reaction to drugs is different. For exampe, although Aricept was developed for AD, it is often more effective for DLB patients. There are some drugs (such as Haldol) that are tolerated by AD patients that can be very harmful or fatal for persons with DLB. Hence it makes sense to spend some effort trying to identify which kind of dementia a person has.
Both diseases, and the other 40+ kinds of dementia, are absolutely devastating to the people who have them and to their entire family networks. Both are heart-breakers. Research about all forms of dementia is extremely critical.
I will only differ on one thing: my husband definitely has "capgras (sp?) syndrome", where he does not always know I am me or thinks I am one of many other people he thinks do things for him. Usually if I look him right in the face and say, "I'M Kathy, your wife," he gets it, but then he may talk about the "other Kathy," so no guarantee.
Kathy, my heart goes out to you on the capgras. A couple of people in my support group have dealt with that. Stressful! I'm pretty sure that the capgras syndrome can occur in Alzheimer's or Dementia with Lewy Bodies (and probably without either of those diseases.) I haven't read whether it is more common in one than in another. But whenever it appears, it is a challenge!
Really important to not get Lewy Bodies and Parkinsons confused. My Dad was diagnosed with Parkinsons first and the meds they gave him made him schizophrenic. add that to the Hallucinations of Lewy Bodies and he was one interesting character. Telling stories to folks who were not here .... etc,
Mother lives in assisted living, had a ct scan this past Tues. and waiting on results. She knows who I am, will start a sentence with a word, then drift off mumbling. Then the other day I visited her by myself, she asked straight out "where's Paul?" (my husb) he was home doing paper work that day and that's what I told her. She seemed to understand. Today her youngest grandaughter called her, knowing Grandma can't carry on a conversation, but told her who she was and talked in a slow(er) manner so Grandma could grasp the words being said. (That says a lot for my youngest, she's an angel to do this for her grandma, mom and herself). But never gave much of a response to anything she said. She continued the conversation like everything was ok she said. Because Grandma wouldn't want anyone to think something was "really wrong with her".....Wisdom beyond her years this girl. Husb and I went to see her later and I asked if anyone had called her...? She said "no" and I asked "did Becky call You? did you talk to her today? and she responded with no's :( " . I can't bear to tell my daughter Grandma doesn't remember her calling, I'm afraid she won't continue to try and rally around with me. Not having any brothers or sisters of my own, but a husb that went to see her today and said 4 words to her, I feel so alone with what's going on. And I don't know much. I just about freaked out when I read someones post there are 40+ kinds of dementia....I have one question if anyone would share an approx answer with me. We don't know if she's had a stroke, she favors her left side, now shuffles with assisstance to get from chair to table to bed to b.r. Can understand when I ask a question, can't answer. Favors her lower left side by sight and touch, hid her security necklace and drank half a chocolate malt I took to her. How many years do I have with her? Thanks for taking the time to read and share with me. maure
Lewy Body Disease discovered by Frederick Lewy in 1912 It is the decline in thinking, memory, language, similar to that of Alzheimer's It is irregularities in the cells of the mid-brain region, where micrsocopic protein deposits deteriorates nerve cells, of some people It is the Hallmark of Parkinsons Disease 2nd common type of Dementia Causes motor problems like those of Parkinsons This is a simple breakdown of what is LBD Andria
Maure, so sorry to hear what you are going through. My husband had a stroke in rehab. but no one seemed to think he had but the physical therapists, so it's possible your mom had one. On the other hand, my husband's Parkinson's symptoms make it very hard for him to move freely anyway, so who knows what might cause what. It's also hard to tell sometimes whether the meds are making things worse unless you take them off one. Linda GS, the neurologist prescribed Parkinson's meds to my husband and he became belligerent, verbally abusive and generally not himself. I really thought I'd have to send him away as it was so emotionally draining. So I took him off the Parkinson's meds and he was back to his old self (well, WITH Lewy Body). We do have to monitor the meds carefully!
Thanks for the information. I guess mom doesn't have Lewy Body. She has no problem getting around. She can kick her leg up higher tha I can. I think she has become immune to her antibiotic and has yet another UTI. She knows everyone and always has. Has very bad hearing and Maculargenernic (sp). Her problems she is Hearing people talk. All these people are dead. She is 93 eats well only prob is high blood readied controlled with meds weighs around 115-120. she is all over the place. This has happened sever times before and I had a standing perscription to cep???? I think it quit working. I can't get a clean catch, have to take to hospital to get a sterile one. I'm afraid they will send me away, because they always do. Saying she is just old and she will just get chinks in her armor. This is so frustrating to me. I have to figure out something by morning. I'm afraid if it is a UTIit can get bad The doctor and hospital don't make things easy on you.
golfbhard, UTIs can cause symptoms that look very much like dementia, e.g., hallucinations (hearing or seeing things/people others don't see or hear, and confusion. How frustrating that the doctor and hospital minimize the impact of a possible UTI and/or are so ignorant as to not recognize that a UTI may be causing some of the problems you have mentioned with your mother!! Good for you for trying to stay on top of this. I'm sorry you are not getting good support from those in the medical field.
Jfry~ thank you. I have a call into the doctor and left the essays she needs stronger meds just so I can get her to doc. She is keeping me up at night and then she sleeps in the day (when doc office is (open) so I can't get her in. We have 2 hospitals here. Her doc only can practice at one. The one that keeps minimizing her problems because she is old and hey, she has lived her life. And she is not a medicaid patient. Medicare and blue cross/blue shield. If I don't get someone to do something I'm taking her to other hospital. Her doc is a geriatric doctor, but also family practice and I think he does more kids then elderly so far. T all of you others that are going through this my j Heart goes out. It's awful to know they can be normal if they get the right treatment and it is so hard to get.
Gosh, if she's 93 and doing that well, terrific! I do read that UTIs can cause lots of problems, even including hallucinations. Hope you can find someone to be on your side at the hospital -contact a social worker, who could be a go-between.
They gave mom the same script. Keflex. But put her on 3 x day. All winter her scripts have been 2x day. Same dosage. Has taken 3 days. She is up more and getting around well, but tonight she said my husband said she was ugly as a mut. We were all sitting there. He is a quiet, sweet loving guy. This hurt him badly. I kept telling her he hadn't said a word. How long does the meds take to kick in? I think she has a really bad one that keeps coming back. He only gave her 7 days meds. Any ideas? She is fine with me, but she is still having audio hallucinations. It's starting to freak me out. ;o(
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
"Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.
Some individuals will start out with a memory or cognitive disorder that may resemble Alzheimer’s disease, but over time two or more distinctive features become apparent leading to the diagnosis of ‘dementia with Lewy bodies’ (DLB). Symptoms that differentiate it from Alzheimer’s include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede the dementia and other symptoms of LBD by decades.
Others will start out with a movement disorder leading to the diagnosis of Parkinson's disease and later develop dementia and other symptoms common in DLB.
Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities, leading to an initial diagnosis of DLB."
(And by the way, there is no rule that a given person can have only one kind of pathology. Some autopsies reveal both tangles and clumps, or characteristics of other dementias.)
Dementia with Lewy Bodies (DLB) generally involves elements of Parkinson's Disease. (Lewy was originally studying victims of Parkinson's.)
Both may include hallucinations. For DLB, visual hallucinations often come early in the disease, and may even be the first symptom that sends the person to see a doctor. Often they are benign and do not greatly disturb the patient. In Alzheimer's Disease (AD) they typically come much later, and they are more often frightenting. These are generalizations and certainly do not apply in every case!
AD progresses somewhat steadily and over a relatively predictable course of "stages." DLB is a roller coaster of ups and downs and is characterized by very noticable fluctuations in cognition. If you look up the stages of AD, don't expect them to apply to someone with DLB.
Both diseases involve memory loss, but the pattern is not the same and the progression is different. People often ask if my husbad (DLB) "still knows you." Yes, and he probably always will. All of the loved ones in my support group who have died knew their family right up to the end. It is AD where loss of recognition is much more apt to occur at some point.
In general, DLB is thought to progess faster than AD, but the rate of decline in each disease is so highly variable, I'm not sure how meaningful that statistic is. And I've also seen more recent studies that don't find much of a difference.
Because the pathology in the brain is different, the reaction to drugs is different. For exampe, although Aricept was developed for AD, it is often more effective for DLB patients. There are some drugs (such as Haldol) that are tolerated by AD patients that can be very harmful or fatal for persons with DLB. Hence it makes sense to spend some effort trying to identify which kind of dementia a person has.
Both diseases, and the other 40+ kinds of dementia, are absolutely devastating to the people who have them and to their entire family networks. Both are heart-breakers. Research about all forms of dementia is extremely critical.
My Dad was diagnosed with Parkinsons first and the meds they gave him made him schizophrenic. add that to the Hallucinations of Lewy Bodies and he was one interesting character. Telling stories to folks who were not here .... etc,
She knows who I am, will start a sentence with a word, then drift off mumbling.
Then the other day I visited her by myself, she asked straight out "where's Paul?" (my husb) he was home doing paper work that day and that's what I told her. She seemed to understand.
Today her youngest grandaughter called her, knowing Grandma can't carry on a conversation, but told her who she was and talked in a slow(er) manner so Grandma could grasp the words being said. (That says a lot for my youngest, she's an angel to do this for her grandma, mom and herself). But never gave much of a response to anything she said. She continued the conversation like everything was ok she said. Because Grandma wouldn't want anyone to think
something was "really wrong with her".....Wisdom beyond her years this girl.
Husb and I went to see her later and I asked if anyone had called her...?
She said "no" and I asked "did Becky call You? did you talk to her today? and she responded with no's :( " . I can't bear to tell my daughter Grandma doesn't remember her calling, I'm afraid she won't continue to try and rally around with me.
Not having any brothers or sisters of my own, but a husb that went to see her today and said 4 words to her, I feel so alone with what's going on. And I don't know much.
I just about freaked out when I read someones post there are 40+ kinds of dementia....I have one question if anyone would share an approx answer with me.
We don't know if she's had a stroke, she favors her left side, now shuffles with assisstance to get from chair to table to bed to b.r.
Can understand when I ask a question, can't answer. Favors her lower left side by sight and touch, hid her security necklace and drank half a chocolate malt I took to her. How many years do I have with her?
Thanks for taking the time to read and share with me.
maure
It is the decline in thinking, memory, language, similar to that of Alzheimer's
It is irregularities in the cells of the mid-brain region, where micrsocopic protein deposits deteriorates nerve cells, of some people
It is the Hallmark of Parkinsons Disease
2nd common type of Dementia
Causes motor problems like those of Parkinsons
This is a simple breakdown of what is LBD
Andria
Maculargenernic (sp). Her problems she is Hearing people talk. All these people are dead. She is 93 eats well only prob is high blood readied controlled with meds weighs around 115-120. she is all over the place. This has happened sever times before and I had a standing perscription to cep???? I think it quit working.
I can't get a clean catch, have to take to hospital to get a sterile one. I'm afraid they will send me away, because they always do. Saying she is just old and she will just get chinks in her armor. This is so frustrating to me. I have to figure out something by morning. I'm afraid if it is a UTIit can get bad
The doctor and hospital don't make things easy on you.
thank you. I have a call into the doctor and left the essays she needs stronger meds just so I can get her to doc. She is keeping me up at night and then she sleeps in the day (when doc office is (open) so I can't get her in.
We have 2 hospitals here. Her doc only can practice at one. The one that keeps minimizing her problems because she is old and hey, she has lived her life. And she is not a medicaid patient. Medicare and blue cross/blue shield.
If I don't get someone to do something I'm taking her to other hospital.
Her doc is a geriatric doctor, but also family practice and I think he does more kids then elderly so far.
T all of you others that are going through this my j
Heart goes out. It's awful to know they can be normal if they get the right treatment and it is so hard to get.
How long does the meds take to kick in? I think she has a really bad one that keeps coming back. He only gave her 7 days meds.
Any ideas? She is fine with me, but she is still having audio hallucinations. It's starting to freak me out. ;o(