Planning for the What-Ifs, Part Five: Sleep Disorders & Advanced Parkinson’s Disease

 Today we continue Parkinson’s Disease: Planning for the What-Ifs, a special series of posts to address both motor and non-motor issues of people with advanced Parkinson’s disease (PD). We are defining advanced PD as those who are no longer independent in their activities of daily living and require help for their self-care such as eating, bathing, dressing and toileting. Remember, PD is a very variable condition and many never reach the advanced stages. Additional background and the full introduction to the series is still available if you missed it.

In previous blogs, we’ve addressed the mental health issues in relation to advanced PD which include: cognitive decline/dementia, depression, anxiety, apathy, psychosis, mania and behavioral problems. We also addressed other topics of advanced PD including falls, extreme immobility, and drooling and swallowing difficulties and urinary and gastro-intestinal issues.

Today we will focus on sleep issues in advanced PD.

Sleep and Parkinson’s Disease

There are many sleep disorders that are associated with PD and that can be problematic throughout the disease course. These include:

• Rapid eye movement (REM) behavior sleep disorder (RBD) – a sleep disorder in which the affected person is not paralyzed during dreaming (which is normally what occurs) and can therefore act out his/her dreams
• Insomnia – an inability to fall asleep at the beginning of the night or in the middle of the night upon awakening
• Restless leg syndrome – uncomfortable sensations, usually in the legs, which are temporarily relieved by movement of the legs
• Sleep apnea – a disorder in which breathing stops and starts through the night, leading to periods of low oxygenation in the blood and frequent awakenings
• Sleep fragmentation – brief arousals during sleep cause sleep to be less restful

PD medications can interfere with sleep by causing:

• Nightmares and vivid dreams
• Sleep attacks (falling asleep without warning)

Finally, there are motor and non-motor symptoms of PD that interfere with sleep. These include:

• Anxiety
• Hallucinations
• Urinary frequency
• Pain
• Tremor
• Stiffness

In addition to all the sleep issues listed above, people with PD often have fatigue, a complicated non-motor symptom of PD, characterized by a general lack of energy, which is sometimes present even in the face of what seems like intact and restful sleep. This can be due to many causes including PD medications, but can also be independent of medication use.

All of these sleep issues can continue to be problematic for the person with advanced PD. In addition, an extreme form of fatigue, or excessive daytime sleepiness (EDS), can develop. EDS is defined as an inability to maintain wakefulness during the waking day which leads to lapses into drowsiness or sleep. Care partners often report that the person with PD will sleep for large parts of the day and care partners are not sure whether or how to intervene.

Possible causes of Excessive Daytime Sleepiness:

• Poor nighttime sleep – all the sleep disorders and PD symptoms that interfere with sleep that were mentioned above can lead to non-restorative sleep at night. This can in turn lead to an overwhelming urge to sleep during the day
• Medication side effect (both PD and certain non-PD medications)
• Neurodegeneration in the areas of the brainstem that are responsible for maintaining wakefulness
• Neurodegeneration may also occur in the area of the brain that controls circadian rhythms – a system of regulation of the sleep-wake cycle and any other process, including hormonal release and body temperature fluctuations, that varies according to the 24-hour clock. If the circadian rhythm mechanism is impaired, the sleep-wake cycle may be interrupted. In its most extreme form, people with advanced PD may have a complete reversal of their day and night.

Treatment for EDS:  a two-pronged approach:

• Improving nighttime sleep as much as possible
• Trying strategies that improve wakefulness during the day

Improving nighttime sleep

The goal is to improve nighttime sleep without using medications specifically designed to induce sleep. There are many reasons to avoid sleep medications. First of all, these can increase confusion and imbalance. In addition, their effects may last into the daytime, thereby worsening daytime sleepiness.

There are a number of strategies that can be tried to improve nighttime sleep:

1. Diagnose nighttime sleep disorders and attempt to treat them – This may require a sleep study – a test which records activity of the body and brain during sleep to try to diagnose sleep disorders. A sleep study may need to be done in a sleep center, but may be able to be performed at home. If a sleep disorder is diagnosed, specific treatment can be tried. For example, RBD may respond to melatonin and sleep apnea may respond to use of a non-invasive ventilation device (such as continuous positive airway pressure or CPAP machine)
2. Adjust PD and other medications to try to improve sleep – this may require removing a dose of PD medication before bed if the problem is nightmares or nighttime hallucinations. On the other hand, it may require increasing nighttime PD medication in order to treatment PD symptoms such as rigidity which can interfere with sleep
3. Treat nighttime non-motor PD symptoms that might be interfering with sleep – this may require addition of a medication taken before bed to treat pain or urinary frequency
4. Focus on improving sleep hygiene – by creating a restful sleep environment with attention to bedroom temperature, maintaining a regular sleeping schedule, and discouraging exercise, eating and use of screens close to bedtime

Strategies that improve wakefulness during the day

Non-pharmacologic interventions for EDS

• Encourage daily exercise and activities – a person without an activity planned is much more likely to doze than one who is engaged in an activity. Be realistic about scheduling a person with advanced PD, but aim for at least one scheduled activity a day
• Light therapy – Light therapy, in which a person is exposed to bright light via a light box, is used as a treatment modality for sleep disorders and psychiatric disorders not associated with PD. A small clinical trial testing its efficacy in PD was conducted and demonstrated an improvement in sleep and in excessive daytime sleepiness.

Pharmacologic interventions for EDS

There are no FDA approved medications for EDS in the context of PD. However, clinicians sometimes prescribe medication off-label for EDS.  These include modafinil, methylphenidate, and caffeine. Istradefylline is a medication approved to treat motor symptoms of PD. A small trial demonstrated its potential improvement of EDS as well. Talk with your physician about the possibility of using a medication to maintain wakefulness during the day.

Tips and takeaways

• Sleep disorders are very common throughout the course of PD and in advanced PD as well
• Excessive daytime sleepiness (EDS) in which the person with PD lapses into periods of sleep during the waking day is increasingly common as PD advances
• EDS is likely due to a combination of poor nighttime sleep and degeneration of centers in the brain that control wakefulness as well as our internal clock called circadian rhythms
• Treatment is focused on both improving nighttime sleep as well as improving wakefulness during the day
• It is important to address sleep issues as they can lead to other health problems and concerns, so be sure to discuss this (and all of your symptoms) with your physician