Lewy body dementia (LBD) is a condition that can take as long as 18 months (about 1 and a half years) to diagnose. What is Lewy body dementia, and why does this take so long? A condition that resembles Alzheimer’s disease (AD), LBD has symptoms that vary by person and can often be confused for other illnesses. This can lead to delayed diagnosis. Now, researchers believe that daytime sleepiness may help healthcare providers speed their discovery of LBD in their care recipients.
Sleep Problems in Lewy Body Dementias
Care partners of people with LBD have long reported drowsiness and daytime sleepiness in their care recipients. People with LBD experience daytime sleepiness early in the disease often before significant cognitive decline has occurred.
In fact, when dementia is caused by Lewy body disease, as is the case with Parkinson’s disease or dementia with Lewy bodies, several types of sleep disorders can occur. Sometimes people with LBD are sleepy during the day but restless at night with trouble falling asleep or staying asleep. Some individuals may not be fully alert when waking from sleep and when this happens, the person may appear confused and disoriented. They may also see something that is not there (hallucinations) or believe something that is not true (delusions).
Other sleep issues, such as insomnia, sleep apnea, and restless legs syndrome are common causes of datime sleepiness in the population, but when they occur in individuals with LBD, these issues can disrupt nighttime sleep and contribute to excessive sleepiness during the day.
Lastly, when a person has LBD, he or she may shout or move around in bed while appearing to be acting out a dream despite being asleep. This type of sleep disorder occurs during ‘rapid eye movement (REM) sleep’, also known as dream sleep. This disorder is known as REM sleep behavior disorder which is often abbreviated as RBD. When RBD occurs while a person is asleep, it can be either mild or vigorous. For some, RBD may lead to injury to the person with RBD or their bedpartner.
Sleepiness in Alzheimer’s disease vs. Lewy Body Dementia
People with Alzheimer’s disease also experience daytime sleepiness. Research indicates, though, that it is more likely to happen to those with Lewy body dementia. Further, feeling sleepy in the daytime is more likely to occur in later or more advanced stages of Alzheimer’s disease, when the cognitive impairment is more severe. In comparison, daytime sleepiness in LBD is often present early in the disease, when cognitive symptoms are very mild. Studies also suggest that the brain mechanisms of sleep and wakefulness are more likely to be affected in persons with LBD compared to those with Alzheimer’s disease.
Tips for Coping with Daytime Sleepiness
Sleep disorders are quite common in LBD, and many of these sleep disorders are treatable. An evaluation with a clinician who is knowledgeable in sleep medicine may be worthwhile.
Consider trying the following recommendations by our experts to see if they work for you:
- Create a structured daily routine with a regular schedule of times for activities and times for rest.
- Include exercise or daily walks during the day with exposure to sunlight (either outside or through a window).
- Attempt more complex, difficult tasks when the person with LBD feels more alert. Save more repetitive tasks or tasks that require little concentration for when the individual is drowsy.
- Use caffeine moderately.
- Limit or discontinue use of alcohol and/or cannabis. These substances produce drowsiness and can lead to disruptions to sleep at night.
- Discuss the timing of your cholinesterase inhibitor (Donepezil, Aricept, Memantine, etc.) with your physician. Taking it in the morning may help with alertness and attention during the day.
- Review medications with your care provider to see if adjustments can be made to reduce use of medications that produce drowsiness.
- Avoid waking an individual with LBD who is acting out dreams unless you are worried for their safety. This can disrupt sleep continuity and lead to sleep deprivation.
- See a sleep expert to treat sleep apnea if present.
The Lewy Body Dementia Association (LBDA is a nonprofit organization dedicated to raising awareness of LBD, with a focus on serving all individuals affected by this disease. At the LBDA, we work to support people with LBD, along with their families and care partners, through outreach, education, and research. To learn more, contact us through our website, sign up for our email newsletter, or connect with us on Facebook or Twitter.