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.


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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..

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

  4. Great Information

  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.

  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.

    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.