The Alzheimer’s Association estimates more than 6 million people are living with Alzheimer’s disease in 2021, and about 1 in 5 of these people will experience a syndrome known as sundowning. It’s a set of symptoms thought to be triggered by fading light; sundown symptoms may get worse as evening progresses and seem to get better by morning.
Caregivers for people with some form of dementia or Alzheimer’s disease may struggle to manage sundowning symptoms because they’re naturally tired at the end of the day and ready for bed — yet their loved one remains very much awake and is hyperactive, confused or agitated.
Understanding the symptoms of sundowning and how to best manage those symptoms can significantly help people with Alzheimer’s and their family. Though Alzheimer’s disease and other forms of dementia have no cure, being able to better manage the frequent sleep disturbances that occur can greatly benefit both the patient and the caregiver.
The symptoms of sundowning
Though researchers aren’t exactly certain what causes sundowning, the prevalent theory is that Alzheimer’s disease or another type of dementia has caused damage to the part of the brain that regulates a person’s circadian rhythm, which is basically our internal clock. Sundowning syndrome typically emerges in people who have mid- to late-stage Alzheimer’s and other forms of dementia, and as the condition progresses, the symptoms tend to worsen.
Once the sleep-wake cycle becomes disrupted, the person may nap much more frequently during the day and then have difficulty sleeping at night.
Sundowning affects different people in different ways, but some of the common symptoms are:
- Confusion — includes disorientation and confusion about where they are and who other people are
- Anger — shouting or becoming argumentative
- Extreme agitation — becoming upset or anxious, or being unusually demanding
- Emotional outbursts — sudden mood swings
- Hallucinations — hearing and seeing things that aren’t there
- Restlessness — rocking, pacing or wandering
- Paranoia — becoming suspicious and hiding objects
- Insomnia — having difficulty sleeping
Factors that may contribute to sundown syndrome
Several factors can contribute to sleep issues — for example, less light and more shadows in the house can cause confusion and fear in someone experiencing sundown syndrome. Other contributing factors may include:
- Mental and physical exhaustion from a full day trying to keep up with an unfamiliar or confusing environment
- An upset in the circadian rhythm, causing a biological mix-up between day and night
- Increased shadows that may cause the person to misinterpret what they see and, subsequently, become more agitated
- Nonverbal behaviors of others, especially if stress or frustration is present
- Disorientation due to the inability to separate dreams from reality when sleeping
- Less need for sleep, something that’s naturally common among older adults
- A change to their routine, or an increase in downtime over activities
- Prescribed medication wearing off (some medications have side effects that contribute to difficulty sleeping)
- Lots of noise or an increase in unexpected noise
As the caregiver, it can be frustrating to try to manage a loved one’s increasing confusion and agitation, sleep disturbances, and other sundowning symptoms. It may be especially difficult when a caregiver isn’t getting their own sleep needs met.
But there are things caregivers can do that may prevent or reduce the symptoms. There are also tactics caregivers can employ so that they may better cope if their loved one’s symptoms worsen.
Helpful tips for someone who’s sundowning
- Try to adhere to a regular schedule. Set regular times for going to bed, waking up, eating meals or going for walks. Schedule doctors’ appointments and other outings, friendly visits and bath time in the morning when the person with sundown syndrome is most alert.
- Encourage more outdoor exercise. Sunlight can actually help reset the internal clock, which is important for people having difficulty distinguishing day and night.
- Be on the lookout for patterns and triggers. Changes in environment can trigger sundowning symptoms. So can loud noises, fatigue, discomfort or taxing activities. Use a journal or a smartphone to keep track of patterns that seem to develop, or for situations that suddenly trigger symptoms.
- Avoid stimulants. Caffeine, alcohol, tobacco and sugar can contribute to sleep disturbances. Also, have lunch be the bigger meal of the day, and keep the dinner meal smaller and simpler.
- Limit stimulation as the evening progresses. Dim the lights in the home, lower blinds, and consider playing soft, soothing music or using calming scents like lavender to encourage drowsiness. Other things to try include making the room temperature more comfortable or adding a white noise machine to provide a constant, soothing sound.
- Consider light therapy. There are studies that suggest light therapy can reduce confusion and agitation. There are lighting products available that mimic the rising and setting of the sun, which may be helpful. Bright daylight tones, for example, may be helpful in the mornings, while cool, dimming lights may help in the evening. It may also be helpful to keep the home well lit in the evening to reduce shadows. Placing night lights in the bedroom may also be calming.
What caregivers can do for themselves
Taking care of someone experiencing sundown symptoms can be stressful and overwhelming. It can be especially hard when nothing seems to adequately calm the person. Here are some things caregivers can do to better cope with a difficult situation:
- Be calm and gentle. Talk in soothing tones, and try not to overreact, argue with them, or shout. Those responses can actually be triggers.
- Allow movement. If the person experiencing symptoms feels the urge to get up and walk or pace, let them. Don’t try to restrict their movement. Just stay close by and keep an eye on them.
- Keep them safe. Night lights can help improve visibility; use gates to block stairs. Also consider using baby monitors, motion detectors, or door sensors that sense movement.
- Ask if they need something. Often, because communication is affected at the mid to late stages of Alzheimer’s disease, the person is struggling to communicate a need or want. Ask them if they need a drink or want to use the restroom, or would like to be read to.
- Reassure them. Tell them everything will be OK. Depending on the individual, it may help to stroke their arm or rub their back.
- Consider hiring a part-time home health aide, or seeking out respite care. Local resources for caregivers are available in nearly every community.
Caregivers need not be alone as they go through this journey with their loved one. Utilize the numerous resources gathered together in this dementia caregivers toolbox. This compendium offers tips, books, videos, books, and links to support groups.