Update: Nearing the End of the Journey

Since we are traveling right now, and learning to use our new (to us) motor home is taking up most of our time, we are re-publishing some of our most popular blogs with a few updates added. This one is actually the most popular by far:

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. Update: This is also true for many other dementias, such as Frontoltemporal dementia (FTD) and Vascular dementia (VaD). 

•  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. Update: This is true for both types of LBD: Dementia with Lewy bodies and Parkinson's disease with Dementia.
• FTD does not fluctuate but cognition does not degenerate as quickly as emotional abilities, especially empathy.
• VaD degenerates only with each stroke event. However, the strokes can be so small and so often that the degeneration appears to be progressive. 

Verbal 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.

• 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 The Caregiver’s Guide to Lewy Body Dementia. Update: There is a whole chapter about using communication in our new book, Managing Cognitive Issues in Parkinson's and Other Lewy Body Disorders.

• 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.

• 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.

• 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.