Saturday, April 21, 2012

Nearing the End of the LBD Journey

We received a question recently about how end-stage Alzheimer's (AD) and LBD differ, and what to be concerned about. By the time a person reaches end-stage dementia there’s so much damage that it’s all very similar and you may not see much difference. These are some of the differences you might see along with some suggestions about care:
Cognition degeneration:Both AD and LBD are degenerative dementias. That is, cognitive abilities will gradually decrease over time.
o   LBD’s characteristic fluctuations between awareness and confusion continue even into this late stage, albeit, few and far between. It is not unusual for patients to know their family members just before death. Look for these and take advantage of them for a final goodbye. However, remember that by now, your loved one will not be able to communicate well.
·         Communication: Eventually any dementia patient will lose the ability to communicate through the normal channels of talking and facial expressions. However, there’s research saying that comprehension is the last ability to go, and so continue talking to your loved one and assume understanding. Remember that touch continues to be important, as does a loving tone of voice. In addition, don’t talk about them or argue with others in their presence anymore than you would if they were responding. 
o   LBD weakens facial muscles, thus talking and facial expressions become difficult often well before the end stages. Add LBD’s larger share of confused thinking.  The result is that much earlier than with AD, LBD folks may stop trying to communicate through normal channels. Behavior becomes the main form of communication.
·         Acting out behaviors: Consider acting-out behaviors the body’s call for help. They usually become more intense as normal channels of communication fail. Look for physical and/or environmental reasons for the behavior: pain, too much stimulation (light, sound, etc.) See previous blogs, and our book, The Caregiver’s Guide to Lewy Body Dementia.
o   LBD affects thinking early on, thus acting-out due to delusions can be a very early, sometimes first symptom. LBD related symptoms such as hallucinations and acting-out behaviors will increase as communication becomes more difficult. However, they may change in form. With degenerating health, agitation and restlessness may be the most common “acting-out” behaviors.
·         Sleeping. People with any kind of dementia tend to sleep more and more as the end nears—20 hours a day is more the norm than not. If your loved one is restless or agitated at this stage, consider this “acting-out behavior” rather than a sleep problem.
·         General health: Eventually any degenerative dementia will cause a body to become incapacitated and die.
o   LBD is more than a cognitive disorder. As already mentioned, its effect on muscles makes communication difficult. It can also weaken other muscles, and it can affect physical health right from the beginning. Therefore, complications like pneumonia, urinary tract infections or falls can be life threatening.  Good patient care and early detection of problems becomes very important. Consider increased acting-out a signal that something is not right. Check for UTI’s, constipation, or other signs of discomfort. If you can find and remove the irritant, the restlessness should decrease.
·         Life expectancy: If there are no complications, a person with dementia can live for many years before enough brain cells have died to shut everything down—often 20 years or more.
o   LBD patients usually do have complications. Therefore, life expectancy is short: 2 to 7 years after diagnosis. However, LBD is seldom diagnosed until well into the disease process. Life expectancy from the first LBD symptom remembered by spouse or family would likely be similar to AD’s 15-20 years—perhaps longer with good care.

30 comments:

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  2. My wife has was diagnosed with LBD,May 2010,I kept her home until Jan 2011,I had to place her in a Care Home.This May,will be 3 years ,she can still add and subtract,and remembers people names,she has a few bad days a week,she is in a wheelchair,cannot sit up,and has to be dressed,somedays she can eat herself and other days has to be fed,her two feet have turned inwards and she cannot stand at all.she was on Sinemet at first 12 a day.she is now down to three pills a day,she is at a plateau,and hasn"t gotten any worse for months..she is in very little pain.I am not sure what stage she is in ...I visit her two or three hours every day...she gets a little antsy ,when I come to see her,I get the nurse to give her a 0.5 mgs of Ativan,and she calms right down and does not seem to shake.,after a half hour or so...I read your article about life expectancy of 15 to 20 yrs.she is now 74 yrs of age...hopefully she will live at least another 10 or 112 years..

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  3. Made an error the last number should be 12 years sorry

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  4. Great Information

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  5. My grandmother was just diagnosised with LBD disease and for yeara she has displayed symptoms of Parkison disease abd a little bit of dementia. Within the past 2 years she has declined rapidly. More jitters and she no longer remembers who I am by name but knows my face when she sees me. She sleeps on and off all day everyday and walks with stand by assistance. She is 86 years old and had lost so much weight even though she she eats a lot on her good days. I just wish I hadore information about what to expect.

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    1. Sorry to be so long answering this...computer issues. But do go to LBDA.org. It is a very informative website. And of course, our books would also be helpful. For you, the Caregiver's Guide to Lewy Body Dementia would be best.

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  6. I started caring for my mother in law a little over 2 years ago. She had been sick for years before we knew (my husband was estranged from his family) so we started caring for her when she was already pretty far gone. She was very violent and delusional the first year and extremely active and aggressive. I say the only silver lining was what a relief it really was when she couldn't walk anymore. She's calmed down considerably bit she had never known who I was, but she does see me as a friend and a friendly face and we are very affectionate. She can't put a sentence together and hasn't for some time, very much potpourri when she speaks (some idea she Lays in bed babbling, other times she sleeps constantly). The sudden changes can be alarming... To have a long term plateau then to suddenly be unable to function in a way you've accustomed to. It's hard to want to communicate with someone you love, it's hard for my husband's family to reach out to her because they are so disturbed by their loss and have a hard time with her behaviors. Only knowing her as ill had given me the opportunity to fall in love with her completely as she is so I feel very blessed. I think caring for her has changed me in deep and beautiful ways, she has been a greater gift to me than I've been to her. Love makes you happy and satisfied but love is hard work and sacrifice. So its never easy with her but its purely fulfilling.

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    1. obapplepie ... I truly enjoyed reading your story. For whatever reason, it's made you a better person and I believe there is someone above that notices those things. My sister is 64 and just been diagnosed with last stage LBD. For years it was Parkinsons but I think they have finally put the correct diagnosis on her. Saw her several weeks back and was shocked how far she had fallen from a year ago. I am 59 and her shakes truly concerned me. After reading this information and your story at least I am a little more comfortable understanding the disease. My niece will be attending to her mother and I only hope she gets the care, the concern, and the love you have shown for your mother in law. That's rare ... and genuine. God bless you and my sister. Little brother.

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  8. Our journey is almost complete. It has been a rough journey but I know it has been harder on him. Unless you have traveled down this road you will never know the heart aches and pain of watching your mate drift away from you.

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    1. Yes, it is called the long death....bless you both!

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    2. I've been traveling this road for the last 5 years or so, sometimes I forget when I first noticed my husbands symptoms appeared. I like the statement you wrote and you hit the nail on the head. Thanks fro sharing your story.

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  9. My husband was diagnosed with Alzheimer disease a few years with beginning symptoms. Last year he was diagnosed at Mayo's Clinic with Lewy Body Dementia. I don't know what stage he is in now but he does have hallucinations every few weeks and at the present is very depressed. He has trouble sleeping so takes about 15mg of sleeping pills a night--which I think is too much but he will not listen to me. He stays in bed all night and doesn't get up at morning until about 9:00 and eats breakfast and then rests on the couch instead of the bed until mid afternoon or maybe all day. I don't know if this is the disease or caused by the sleeping pills. He is a very strong willed person but very depressed. He takes 75mg of depression meds twice a day--is that enough?? What can I do to make him happier? He does enjoy company and does seem better while the other family members are here. Husband is 79 years old and has always been quite active and this really depresses him because he can't seem to take his daily walks and exercise. Any ideas would be appreciated from those that have been through this terrible disease with their loved ones.

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  10. Sounds like you need to talk to his doctor. Some sleeping drugs can make his symptoms worse. Is he following the prescribed dose for the depression drugs? Do encourage him to exercise as much as he can. Getting friends to offer to walk with him might help. Anybody else have any ideas?

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  11. We have had three neurologist who have seen my husband. Only one has said LBD. the first said parkinision. the second said LBD after the test and told me to go on the internet and read about LBD. Shortly afterwards he said he was leaving and going to another state for personal reasons. We would see the third doctor who kept my husband on the same medication as the second doctor had given. When he began to change the third doctor wanted to do blood work , scan of brain and for him to see a psychiatrist. He thought my husband had had a stroke. I tried to explain LBD to him but he said all I wanted was control over him. What a sad thing to say to a wife of 62 years and is still caring and still loves him to the end. Yes I sit by his bed and hold his hand and kiss his check at night until he goes to sleep. Because I know he did not have a stroke. I will always be thankful for the doctor who told me about LBD.

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  12. My mother-in-law was diagnosed with Lewy Body Dementia 3 years ago. Two days ago, her husband couldn't get her out of bed and called 911. Since arriving at the hospital, she has not eaten, they have administered small amounts of fluid through placing a syringe in her mouth and squirting it in, then she swallows. She has only regained consciousness a few times for a few moments each time. Her speech for the most part has been not understandable, but sometimes she says a few words. Is this the end?

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    1. Sounds like it might be...a person needs very little food at this time--her digestion system has probably just about shut down. The fluid is probably more than adequate. Remember that even though you may not be able to understand her, hearing and comprehension often lasts to the end so keep on talking to her and assume she hears and understands even though she appears to be comatose. And take care of yourselves...this is a difficult time for the family too.

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    2. I really don't understand the lewy body Dementia. We have been dealing with falls, confusion, mask face, staring into space for at least over 2 years now. First thing her heart was checked and was good. She did fine for about 8 months then the falls started getting worse, we as a family thought she was taking to much meds to cause her symptoms. Not understanding what she was going through she had made herself appointment with Dr to see why this was happening. This medical dr suggested Perkins and started meds until we could get in to see neurologist. First neurologist said not parkions and said she needs her meds adjusted sending us back to medical dr. Then ended up in hospital 2nd time to be told it could be a virus in the brain and started treating her with steroids. Went home she always did good for first 2 weeks after being put on meds then gets worse. This last time I took her to abother ER due to her getting worse and she was dehydrated and didn't k ow what was going on around her. This is where we was told she could have lewy body Dementia but that there are a couple of different dementia that they could not be sure which one she has.( lewy body Dementia, pick disease, and mixed dementia). She very sick while in hospital, went from not sure who I wax to not eating, drinking, not able to barely talk or get the words out that she wanted to say to unable to feed her self or not knowing when she needed to go to bathroom. They sent us home saying she was at the end of the disease and called hospice in to help care for her. I stopped working to bring my mom home to care for her since we were told we were looking at only 1hr to 6 months. About a week after here being her it was a huge adjustment fir everyone in our house not to mention money issues that was going to happen. Mom had been her with me about 4 weeks now to only see her improving her conditions. She does take a couple naps a day but her confusion is better; feeds her self, walks with a walker on her own, go's to bathroom, alone now, she knows everything and body around her. the only fall back is alot of head pain. It started about 1 and half ago and hasn't let up. Hospice still come 2 times a week. Is this normal to go from one extreme of Dr's saying she is at the end to her doing really good. She hasn't been seeing or talking to people that aren't there any more since hospital and is able to eat well on her own an swallow her meds good. Her meds was has having to be crushed and put with ice cream. is this normal to go back and forth like this or maybe she does gave longer to live? she really misses being at home. But I live 40 minutes from her home and don't want to take the chance on her falling again or unable fix her food. I have a family member that does live close to her but they are not dependable. If this is just a short period of her time that is good then I want to enjoy every minute with her, I just don't know what to do. it makes me very frustrating to not understand this disease and not know what I'm supposed to expect from day to day or week to week. I feel like she's getting better or is this just normal?

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    3. Your mother should not live alone. If you can't have her with you or another family member, consider residential living. Yes, Lewy body dementia (LBD) fluctuates a lot, and yes, she can still live much longer and yes, she can still have some quality times. Find a support group to attend (go to LBDA.org and click on "support"). The members will be able to answer many of your questions from their own experiences.

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  13. My dad was diagnosed with LBD 3 years ago. He did pretty well until 3 months ago but then he had a rapid decline. We had to place him in a nursing home 3 weeks ago. He doesn't talk much or even seem to acknowledge our presence anymore. He can't walk anymore and is barely eating anything. He is an amazing Dad and I'm so blessed to have had the last 3 years with him. I don't think he will be with us long. It's heart wrenching. I hope he finds peace soon. I hope we all find peace soon.

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  14. After 5 years, Mom was finally diagnosed with LBD through a sugar PET scan. We know what she had was not the "normal" Alzheimer's. Although NOT what we wanted to hear at least it was a diagnosis that fit what we had been following for so long.

    Probably brought on by endoscopy anesthesia and two surgeries within 14 mos of that - all 3 causing delirium that was not corrected or helped. Chronic leg pain caused by daily use of Prilosec-when take off, pain magically disappeared! for ever. She also probably had depression from the pain and Prilosec and when off of the "evil" crap, she had horrible anxiety that continues to this day. We found out that she has gene mutations that don't allow for meds to work in her system, so SSRIs are out, etc.

    Brother had Parkinson's along w bladder cancer that took his life at 65 4 years ago, She barely remembers that. Her sister died Oct 1, 2015 of probable ALS, though we think it is more related to Parkinson's, but no autopsy will be done. Mom has the LBD and it has been all consuming for almost 6 years. My husband was diagnosed with PC last October, but I have pretty much been having my parents at my house or I'm at theirs for past 8 months away from family. Anonymous above, I wish that my mom would have a rapid decline so as to be at peace and with her family above. On the day Barb died, my mother in a non-sensical conversation, said in the middle of a sentence, "Barbara died" and continued talking. Another conversation a week later and she asked where she was, I said, Florida, she said to me, "No, Barbara told me she died". Weird but we believe Barbara was trying to reach out to Mom because she worried about her so.

    We are just so sad and I see my dad grieving and my heart is torn.

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    1. There is a special feeling that comes with a diagnosis that fits...as you say, not what you want, but one that means you can quit searching. Re "no meds" have you tried essential oils? They may work where the drugs don't. You can use them in a variety of ways..I like aromatherapy because it is so easy. There are some oils like lavender that can be very relaxing. One warning, use only a small amount...too much can have an opposite effect!

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    2. My brother and i take turns caring for our mother during the week. She was diagnosed with LBD in may 2015 after a diagnosis of parkinsons in July 2012. We have HHA's and a CNA come and stay overnight so we can get some kind of rest. My mothers hallucinations have gotten worse as well as her incontinence. Her anxiety level is through the roof and she becomes agotated very easily dispaying tantrums much like a two year old would. She is currently taking three psychotropic drugs as well as xanax and carbodopa/levodopa. Her depression is extreme with bouts of crying. One thing that i havn't read in any medical journals or posted is my mother will watch the same dvd over and over all day long every day. For instance she will watch the wizard of oz back to back 3 to 4 times during the day then when night time comes she will pick the king and I and watch it 2 to 3 times every night. I talked to her neurologist about this and he told me she also suffers from OCD and this is one thing she can control. If anyone has heard of anything like this please let me know. We will soon be expanding her outside care to include 3 to 4 day shifts through the agency that provides her night help as my brother and i can't do it anymore at this pace. I'm writing this now extremely fatigued from taking care of mom this week and input would be great.

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    3. So sorry to hear about your mother but she is fortunate to have you and your brother. Do take care of yourselves and get enough help. Dementia caregiving is very hard on caregivers! Re her meds, I'd suggest talking to her neurologist about her meds. Psychotropics are among the drugs that can cause more problems than they solve for someone with LBD. They can even have the opposite effect sometimes and so this might be where some of the anxiety is coming from (see 7/17/`3 blog). Carbodopa/levodopa may be a culprit too. It does help the movement issues but when hallucinations or confusion first show up, a Lewy-savvy doctor will usually change or decrease the PD meds (see 8/23/13 blog). It can also trigger OCD (see 7/5/13 blog). Depression is a common LBD symptom. You didn't mention antidepressants but some of the newer ones may help and are less likely to have the negative effects that psychotropics or PD meds do.

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    4. I am a caregiver in a facility for the elders..
      I have a elder I administer care to on a daily basis with all signs and symptoms of LBS...with out the actual diagnosis. I only learned of this recently. ..For months of challenges and not truly understanding of behaviors It truly has saddened me to learn of this disease. ...But I thank all of you who have shared your experiencs about LBS.It is a eye-opener in the care I can give to my elder....I play a very important role in their lives everyday. I only stumbled on to this site by accident and am truly great full that I found you all.... please continue to share with each and every one, all of your stories ...it has truly been a eye-opener to me and how I can give my elder the best that they deserve. ......thanks to you all......(tennessee.)

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    5. And thanks for all you do for the people under your care. Do check out the rest of the entries in our blog, our website (LBDtools.com), the Lewy Body Dementia Assn. website (LBDA.com) and finally, the Teepa Snow website (teepasnow.com). All of these are wonderful resources.

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  15. My father passed away from pancreatic cancer in December 2012, and my mother has been declining since then. I think my Dad covered for her a lot when he was alive. While caring for him, my brothers and I noticed my mother struggling with her memory as well as being "out of it" when it came to issues with my Dad. She was diagnosed with LBD shortly afterwards. We have gone from her staying by herself only during the day to someone having to stay with her full-time. She let a girl into her home and gave her money. She wants to stay in her home, and we are trying to make that possible for as long as we can. So now we have several caregivers who stay with her during the day and weeknights; my brothers and I stay with her on the weekends. Within the last month, she is sleeping about 18-20 hours per day about every other day. She says her grandmother is constantly with her, and my Daddy and Grandmother visit occasionally. She also sees her grandchildren. She even talks to empty chairs when I am with her, thinking I am sitting in the chair. Her speech has begun to slur somewhat, and she has a shuffling gait. Will her constant sleeping cause her to decline more rapidly, and bring on the infections more quickly that will lead to her death? Thank you for this BLOG. So helpful to speak with others going through this with their loved ones.

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    1. Sorry about your mom--she is fortunate to have you and your brothers. You asked about sleeping ... it is normal to sleep so much towards the end. You might talk to her doctor, but it probably is nothing to worry about. Just as her hallucinations are not. In fact, it sounds like they might even be comforting to her.

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  16. Joy
    I'm really moved by the kind counsel you are giving to so many hurting people. Never thought I would be writing, or even reading this blog!... But sadly enough I think the time has come.

    I have been noticing changes in my husband's behavior for a very long time. He is a brilliant man that has had three psychotic breaks. The first one in 1997, the second one during the 9/11 attack, and the last one in 2003. He is bipolar, and after many failed meds., he talked to his PCP to prescribe Lithium. That was the only medicine that actually worked.
    But regardless of how much it helped, he has always had very unusual behavior. I never know what I'm dealing with. Is this a guy thing? A bipolar thing or just him?

    About five years ago, things got to a whole new level. I spoke to his doctor and she referred him to a neuro-psychiatrist.
    After a very long interview and MRI's his conclusion was that there was most definitely signs of dementia "most likely Alheimers."

    Of course it was devastating for me, but he cope with it by saying that the tests were negative, so there was nothing wrong with him. (exactly the opposite the doctor said)

    Just a few days ago, I watched a show about the forensic studies done on Robin Williams and for the first time I heard about LBD. I was shocked. His symptoms are very consistent with those mentioned in the program. The sleep disorder, the incontinence, the "disconnect," depression, and flat affect... The spontaneous anger bursts, the passivity in his body... Except for the tremors and hallucinations, actually until tonight when he told me "the strange things he sees as he is waking up". That was what prompted me into doing some more research on it.

    The one thing I don't understand is that at times he can be as brilliant as he used to be. I never know what to expect, although most of the time, he hibernates.
    Is there any correlation between the bipolar condition and this type of dementia. Could he have been having this for years, and never been diagnosed? Specially because he is so smart and cand manage it so well?

    I'm aware you would not be "diagnose" him, but do you have any thoughts about it?

    Thank you so much for even reading this long story...

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    1. Joy, Welcome to a club that no one wants to belong to but few would leave even given the chance. As a caregiver, your journey will often be devastating but one blessing is that as the disorder advances, apathy joins the party and makes it much easier for your loved one. I wonder if that may not be part of the way, besides denial, that your husband is coping.
      Yes, your husband's symptoms, including his fluctuating cognition, are very similar LBD symptoms. I don't know of a correlation between LBD and bipolar disorders, but neurological conditions often appear together. I haven't heard of Lithium working with LBD but it is often helpful with bipolar disorders. Bipolar is common at a younger age than LBD is and it does have some similarities. One similarity is that it can advance to dementia too. I'm not familiar with the specific symptoms.
      If you really want to know if LBD is present, go to a geriatric psychiatrist or a neurologist who specializes in dementia. They are more likely to recognize LBD. A LBD diagnosis alerts physicians to be more careful with the drugs they prescribe. If you are comfortable not knowing for sure, then make it a point to learn about the drugs that people with LBD can be sensitive to and avoid them--just in case.
      Finally, our latest book, Managing Cognitive Issues in Parkinson's and Lewy Body Dementia, addresses the symptoms leading up to LBD and some ways to manage it (and the symptoms you name, no matter what their cause) with fewer drugs. It's available on our website, LBDtools.com and on Amazon. I'd also suggest anything by Teepa Snow, who also teaches ways to manage symptoms with fewer drugs.

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