Apnea, is a condition where sleepers stop breathing hundreds of times during the night. The autonomic nervous system (ANS) automates a person's life supporting activities such as breathing or heartbeats. We don't generally have to think about these actions. Our body just does them. Apnea can happen without dementia, but dementia, and especially LBD* weaken the ANS* so that a sleeping person "forgets" to breath. The resulting lack of oxygen in the brain wakes up the person. They start breathing again but they don't really catch up. With each waking event, the brain gets a little more behind. It needs lots of oxygen to fuel that janitorial service that works while you sleep to clear out dementia-causing debris. (Sleep, Part 3) With the brain still clogged, dementia symptoms can increase. (Think about how foggy you feel after a sleepless night!) Thus, it is a vicious circle. Dementia may cause apnea and then apnea makes the dementia worse!
Apnea is treatable but a PlwD* may not be able to tolerate or accept the treatment, which usually involves wearing a CPAP* mask while sleeping. Without an understanding of why it is needed, the PlwD will seldom leave this strange and annoying device on long enough to get used to it and find out how much better they sleep.
Doctors sometimes prescribe sedatives to help a person get to sleep initially while wearing the mask, but that is seldom an option for anyone with dementia, and especially anyone with LBD. A milder anti-psychotic like Seroquel or a mild anti-depressant like Welbutrin might help, but they are not always an option either. Some people tolerate these drugs and some don't. Besides, waking up and going back to sleep--with the mask on--is the real hurdle. It can't be fixed over and over with drugs.
In an online forum, a care partner told of how her loved one becoming very disoriented when he woke up with this strange contraption on his face. Another group member responded, "At this point (and condition) of that good man's life, I just wouldn't try to get him to use it. There will be enough things to cause him panic, distress, and discomfort in how he will be spending his life now, without adding a CPAP mask to what he will be going through." The group member has a point. Besides being a confusing irritation to the PlwD, trying to do something so difficult is also distressing, and often sleep-depriving, to the care partner as well. Is the high cost in peace and sleep worth a benefit that is limited because the mask comes off over and over?
Perhaps, this is an example of when a care partner must stop and re-evaluate their goals. There comes a time in the care of a PlwD when care goals must change from improving function to choosing comfort. A CPAP mask is actually very good for improving function--it can greatly improve clarity if used properly. But if the PlwD's dementia is so advanced that they can't use it properly, it is probably more of a burden than help. The changing of a goal from function to comfort is not easy because it signals the beginning of the end. However, it doesn't have to happen all at once. With each treatment and each activity, a care partner gets to make a separate decision. Some efforts at maintaining function can last much longer than others. Using or not using a CPAP may simply be the first decision of this sort that comes along.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
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ANS: Autonomic nervous system
CPAP mask: Continuous positive airway pressure mask
LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia