Dementia currently impacts nearly 47 million people around the world. Sleep disruption is commonly experienced by individuals living with cognitive change due to dementia, with approximately forty percent of individuals living with Alzheimer’s Disease experiencing the symptom at some point in their disease progression, and those with differential diagnoses, like Dementia with Lewy Bodies or Parkinson’s Disease, at an even higher rate.
Sleep disruption can negatively impact quality of life and function not only for individuals living with a form of cognitive change, but for those involved in their care as well. Studies have shown that long-distance carers experience as much if not more anxiety about sleep concerns as do their live-in counterparts. Furthermore, sleep disruption is associated with higher levels of neuropsychiatric symptoms, like anxiety and depression, for the individual living with cognitive change. In fact, sleep disruption is one of the leading causes of early institutionalization amongst individuals living with Alzheimer’s disease or related dementia. Prompt and targeted intervention is important for all involved. Medication-based treatments can lead to daytime sleepiness and other side effects, so it’s important to consider all options when creating a plan to combat sleep disruption.
Isn’t getting days and nights mixed up just part of the disease process?
While damage to a part of the brain called the suprachiasmatic nucleus, which regulates Circadian Rhythms, can occur secondary to dementia, there are other, treatable causes of sleep disruption that can happen as well. It’s important to get to the specific root cause of an individual’s sleep disturbance to find the best treatment and maximize quality of life.
Doctors and sleep specialists classify sleep disorders and treat them differently, so it’s important to have an accurate description of what’s happening with the individual’s sleep. Some questions to consider include, does the person living with dementia:
A doctor will also likely inquire about the individual’s routine and medication regimen. Having this information prepared in advance can lead to a more productive consultation. Data from an Apple Watch or other fitness or sleep monitoring device may also be useful to bring along. If these are not available, a good old-fashioned “sleep log” can help. Use it to journal the number of hours an individual is awake versus asleep, and what his or her activity has been like across a twenty-four hour span. It is helpful to have a few weeks’ data if possible.
Sudden changes in sleep patterns are not normal and can be an indicator of a clinical issue, like an infection, cardiac concern, depression, or even undiagnosed pain (which is a common cause of restlessness among those living with dementia). Ask the doctor whether further evaluation is called for based upon the changes you’ve observed. You might also explore a medication review, to ensure medications are being given at the optimal time.
Certain forms of dementia, such as Dementia with Lewy Bodies and Parkinson’s Disease Dementia, are more commonly associated with disordered sleep. In fact, REM sleep behavior disorder is a hallmark neurologists use to diagnose Dementia with Lewy Bodies. These diseases may require treatment by a doctor who specializes in the specific neurocognitive disorder for successful intervention, as they can be tricky to treat and highly sensitive to medications. With that said, supplementing pharmacologic treatment with some of these additional holistic tips can be helpful. Have questions about where to find specialized care? We’ve supplied resources here.
What does your routine bring to you? Opportunities for challenge? Mastery? The chance to socialize and move about? Individuals living with cognitive change from dementia benefit from these experiences too. Getting out and being active can help issues like depression and constipation, and promote better sleep! Spending time in the fresh air and moving around should be priorities, as fresh air, sunlight and exercise are shown to positively impact Circadian Rhythms. If it’s too cold, consider a brisk walk at a brightly lit mall or museum during “off-hours.” Waking at the same time each day has also been shown to improve sleep patterns. If the person you’re partnered with is resistant to waking up, try a Sunrise alarm clock. They can be programmed to perform the same wakeup routine each morning, and utilize both light and sound to prompt a person to start the day. Another helpful intervention is drawing in the senses with a cup of coffee or citrus juice to ease the transition from sleep to wake. A final tip on routines – overexertion can cause all human beings to become “wired.” Evaluate whether the individual living with cognitive change might need an opportunity for structured rest once or twice during the day. The frequency of needed rest may change as a person’s disease progresses.
Look around the home of the individual living with cognitive change. Does it provide context for what time of day it is? Is the clock visible and legible to them? Is there bright light during the day and darkness at night? If it’s pitch black outside at four in the evening, you may want to close the shades and turn up the lights. All individuals rely on their environments to orient them. Individuals living with cognitive change are no different; however, they may experience sensory limitations that make cueing even more important. Work with an occupational therapist specializing in cognitive change to evaluate what supports might be most beneficial. Many occupational therapists work on sleeping environments and routines as part of their regular practice.
Believe it or not, at some point in your development, you learned to soothe yourself to sleep at night. There may be days and times when you struggle to do so now, but you have acquired the skill to decrease your arousal levels and ease into sleep. Individuals living with cognitive change may need support to accomplish this same feat.
A few tips:
For some individuals, like those who have experienced trauma, done years of shift work, or whose differential diagnoses have made sleep disruption a fact of life, carers may need to get creative. Partnering with home care professionals to provide coverage when the individual living with dementia is awake at night is one strategy. Some individuals (and families) can thrive with this type of Rhythm in place.
The home care professional will need education to offer engagement during unconventional hours, in order to maintain as consistent a rhythm as possible and to minimize disruptions to other individuals in the household who may be catching some much needed shuteye. If the environment does not afford enough space or security for this to happen safely, it may be time to consider a move to a secure setting for your loved one. Sleep is something to take seriously for those living with cognitive change and carers alike. It is a pillar of physical, mental, and emotional health.