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.

Aggressive vs. Palliative Treatment: End of Life Issues

The New York Times 2007 article, Treating Dementia, but Overlooking Its Physical Toll, talks about how many of our loved ones, towards the end of their lives, are subjected to unnecessary life prolonging treatments such as dialysis and colonoscopies. Author Tara Parker-Pope says this is because so few recognize dementia as a physical, as well as mental disease.  Fast forward to 2012. Parker-Pope's article is still relevant. People, including those in the medical community, still have trouble accepting that end-of-life needs are different. These treatments have their place when we are younger, healthier. With an eye towards a better future, most of us are willing to put up with some discomfort and inconvenience, even surgery.

But this changes when the end of life is near. Then, quality of life becomes more important than a little more time. This is especially a concern with LBD, which causes so many physical problems in addition to the dementia. There comes a time when treatment for something such as kidney failure will make little difference—except to decrease the quality of one’s final days.  Our LBD folks are also especially sensitive to stress. These treatments will almost always add stress of some sort—which increases LBD symptoms—and probably increase the progress of LBD as well. Who’s to say whether these treatments really extend life at all, when this is taken into consideration?

A common example of “aggressive treatment” is the use of feeding tubes with an end-of-life dementia patient. Dementia is a debilitating disease. As the brain dies, so does the body—and its need for nourishment. Not only can the tube be an unnecessary torture, but the food, going into a system no longer capable of processing it, adds to the discomfort.  (Think about what it’s like for you when you feel very constipated.)

It’s not just the treatments. It can also be a state of mind. Carrie is a good example. Early in the LBD journey with her mother, she learned to aggressively push anything that might delay the dementia.  She searched the internet for the newest ideas and treatments. She pushed her mother to get out and socialize, to move and exercise, to drink enough fluids, to eat enough of the right foods, and on and on. The experts tell us all of this will help the dementia progresses more slowly.  Carrie wanted the best for her mother and so it bacome a habit—a way of life.

 But dementia DOES progress, and no matter how she tried, the time did eventually come when their journey with LBD is almost over. Accepting this was seldom easy. She didn’t want to lose this person she held so dearly. Of course, she didn’t—but it is no longer her choice. Her mother had moved into a different space with different needs now. At first, Carrie felt as though she was failing. Maybe she just needed to work harder, push a little more. The failure would have been if she hadn’t been able to move past her own needs and see that it was time to change her goals, her behaviors and her expectations to support her mother’s end-of-life need for peace and comfort.

Now is the time to relax. Carrie‘s aggressively proactive approach, once so helpful, was no longer supportive of her mother’s needs. Now is the time to sit and talk and laugh and touch and just be there. Daytime sleeping, once such a concern, is no longer something to worry about; 20 hours out of 24 is not unusual at this stage.  She may also need to take a stand against medical personnel who have been trained that they must work to extend life, no matter what the cost.  The good news is that with palliative treatment, there’s less stress and thus, reduced LBD symptoms—and maybe a longer life. 

References: Tara Parker-Pope’s Well blog and article.

Also:  A Caregiver’s Guide to Lewy Body Dementia, Chapter 14
Website: LBDtools.com