- Sundowning is a symptom of Alzheimer’s and other dementias. It often happens between late afternoon and early evening.
- Sundowning refers to a state of confusion, restlessness, or agitation that typically occurs during this twilight time.
- Providing care for a person with sundowning tendencies can be especially exhausting.
- There is no treatment for sundowning but adapting to a healthy lifestyle can mitigate some of the harsher effects.
“Sundowning”, “sundown syndrome”, or “sundowner syndrome” are simply different designations for the same condition. Sundowning is not a disease. It is a symptom of Alzheimer’s and other dementias, particularly vascular and mixed dementia. It seems to occur more commonly in persons in the middle stages of the underlying dementias. Sundowner syndrome symptoms are estimated to occur in up to 20% of individuals with dementia.
Sundowning has been described as an eruption of hyperactivity, confusion and agitation that people with dementia can experience in the twilight hours of afternoons and going into the early night. The more precise timeframe for these behavioral complications typically starts at around four-to-five p.m. and extends to midnight.
The hyperactivity can produce hazards such as falls, wandering, and aggression that might cause serious injury to others. Studies of nursing homes have shown that a high number of harmful incidents occur between six and eight p.m.
The word “sundowning,” also implies sleeplessness, or a state of agitated sleep patterns. The terms “nocturnal delirium” or “sleep disturbance” are frequently used for this inadequately explained mind phenomenon.
The medical data that relates to sundowning is at best cryptic and inconclusive; here is some of the researcher speculation that surrounds the sundowner syndrome:
- For patients in long term memory care wards and nursing homes, the agitation seems to coincide with the time of day when there is considerable commotion with changes in personnel shifts, with family members visiting residents, and with people preparing for or having dinner.
- Sundowning is related to relatively excessive daytime activities, sensory stimulation, and tiredness and stress. Fatigue, low lighting, and increased shadows at sundown may also be factors.
- One theory connects the symptoms of sundowning to a disturbance in the body’s “internal clock” (this is also referred to as the “circadian timing system”); that theory asserts that the brain damage caused by Alzheimer’s sets off permanent confusion between when “I’m tired and need to sleep” and “when I’m rested and ready for activity”.
- Although not common, and frequently temporary in nature, sundowning has been known to exist in persons who are not diagnosed with Alzheimer’s or any other dementia; for example, healthy elderly individuals can exhibit sundowner symptoms, particularly after surgery that involved anesthesia, or during long stays in a hospital.
- It is common for the staff at long term facilities to have specific strategies to deal with this most hazardous time of day for residents; they generally attempt to reduce the level of noise and boost the lighting in the areas occupied by sundowning individuals.
- Sundowning is particularly problematic to caregivers and family members who get worn down by the incessant hyperactivity of late afternoon and nighttime.
The medical community reminds us that the difference between a sign and a symptom is that your doctor can detect a sign, such as the very first flicker of memory loss or confusion, whereas you tell the doctor what symptoms you have experienced, for example being unsteady on your feet, or enduring frequent headaches.
The symptoms of sundowning are as follows:
- Mood swings, paranoia; delusions of being watched, a suspicious deportment
- Disorientation, insecurity, and being argumentative and demanding
- Becoming combative or aggressive, hurling insults, and occasionally lashing out at caregivers
- Wandering and attempts at elopement
- Visual and highly vivid hallucinations
- Resistance to care or special attentions
- Confused or disoriented speech patterns and removal of medical devices
- Inability to sleep and restlessness at night
Many people enjoy the sunset. Sunsets are picturesque, and they usher in the beginning of evening after a day of labor. Families congregate in the early evening around dinner, chatting and sharing in their daytime activities. For the most part, we look forward to sunsets that transition us from our relatively hectic daytime goings-on to unwinding with family, dinner and subdued pastimes or hobbies, before eventually relaxing into sleep.
It is naturally not so for those who experience sundown syndrome. For them, sunsets and the evening hours can be associated with heightened dread and scorching anxiety, as opposed to the calm and relief many of us feel.
Providing care for a person with sundowning syndrome can require a great deal of compassion and self-sacrifice. For the sons and daughters of a parent with dementia, witnessing an intense increase in their parent’s agitation at sunset is a difficult experience that is almost impossible to get used to. It can be exhausting and very upsetting to watch a parent go through such agitation.
Sarah, a 74-year-old with early-stage vascular dementia, used to be a gregarious, fun-loving woman with a horde of accomplishments, not just in her teaching career, but also with her much sought-after oil paintings.
When her daughter, Linda, first came to see me at the homecare agency, it was strictly about getting a part-time nursing assistant to help care for her mother. “Only a few daytime shifts a week,” she said, before explaining that, “I have a sister and brother who both help me look after Mom in her worst hours in the late afternoons.”
I asked a few questions of the type that would help me get Sarah a compatible caregiver. That’s when Sarah’s story unraveled, a story that to this day still affects me, for although I’d had a few exposures to clients with sundowner syndrome in the past, the difference between Sarah’s daytime behavior and that in early evenings and at night was uniquely remarkable.
For example, Linda said that in the morning hours and after lunch, her mother exhibited low-level confusion, with slight memory loss and groping for words and other language issues. “These,” she added, “were typical of early dementia symptoms and, frankly, were kind of easy for us to deal with.”
That’s when Linda began to tear-up. “It’s like at precisely that time of day, the devil gets into her, and she starts acting up in quite terrifying ways.”
When I asked her to expand on that, she said, “She all of a sudden becomes agitated and argumentative -even combative. She says crazy things like some bad people are coming after her, and she starts pacing back and forth throughout the living room.”
“It gets worse,” she continued. “The nighttime routine is absolute hell for whoever is caring for her. She yells out curse words incessantly and lashes out, and no one can get any sleep for she will be restless and ranting about people of some fifty years ago.”
“So, what do you do?” I asked, with both my empathy and interest piqued to the utmost. Although I was more or less familiar with the range of behaviors of a person with sundowning, this was the first time I got a first-hand report with this much graphic detail.
“We did all the things that we were told and read about. We put her on a regimented routine so that she would find her rhythm and be hardly ever faced with big surprises. We tried to infuse into that routine as much brisk activity in the mornings as she could tolerate, so that come the late afternoons, she would be fully worked out.”
“How did that work?”
“Better, I suppose, than had we not done it. And because of her sleeplessness and agitated nights, we eliminated all naps during the day and avoided like the plague coffee and other stimulants, particularly alcohol, since she used to like her drink.”
After taking a little breather, Linda continued. “At a certain time in the late afternoon, we turn some lights on throughout the areas she occupies; that, we were told, gets rid of shadows that can spook her and avoids falls from dim lighting. In the early evening, we also eliminated as much noise as possible and told everyone never to come visiting after a certain hour of the day.”
“Were you able to detect any patterns you could count on?”
“Some, except that they kept changing. For example, there were times when she would shadow me all day and kept asking me the same questions. At first it bugged me like crazy for not knowing what was going on, until I realized that she each time forgot that she had asked me the same thing already.”
“What is the worst that Sarah can do from your perspective as a caregiver?” That was a common question I asked any person with a parent with dementia, if only because I had to be able to fully brief the caregiver we would send there.
“Her hallucinations would drive us nuts,” Linda started by saying. “That and the risk of having her wander at night and do something stupid, like walk out of the house or fall and cause herself harm. If she were able to get out of the house, and believe me she is capable of all sorts of tricks like that, there is no way she would be able to find her way back. That puts enormous pressure on the family or hired caregivers. As for her hallucinations, they’re so vivid and so filled with paranoia and other intense and scary stuff that we often think she is going to cause herself major injury in her sleep.”
After talking to Linda, I felt better able to send her just the right individuals to help care for her mother; compassionate, for sure, but also tough, no-nonsense caregivers.
Researchers still have a lot to learn about sundowner syndrome. It is not a disease, and it is characterized only by its signs and symptoms, which in turn are known to differ at times drastically from one individual to the other.
There is currently no treatment for sundowning behavior -merely attempts at soothing the symptoms and reducing agitation. However, there are a few recommendations to reduce instances or severity of sundowning:
- Keep the home well lit at night to reduce shadows
- Create a comfortable and safe environment for sleep
- Maintain a regular schedule or predictable routine
- Limit daytime napping
- Avoid stimulants (e.g. caffeine, alcohol) later in the day and big dinners
- Encourage activity during the day to reduce restlessness
- Try to identify and reduce environmental triggers (e.g. tv, background noise)
- Play calming music in the evenings or relaxing sounds
- Be aware of your own stress and agitation – it can transfer!
The exact roots of sundowner syndrome remain elusive. While research continues, most people with sick aging parents stop searching for deep answers and expend their energies instead on the daily rough-and-tumble grind of managing the symptoms.
“There is not a clear definition of what sundowner syndrome means,” says Dr. Peter V. Rabins, professor of psychiatry in the geriatric psychiatry and neuropsychiatry division of Johns Hopkins University School of Medicine. “It’s a phrase. Some people would only include agitation in the definition. It is a range of behaviors—something that is not usual for the person. That can range from just being restless to striking out.”
Both hired and family caregivers can experience burn out when dealing with difficult behaviors like sundowning. Not only are the severe sundowning symptoms, like violent hallucinations, paranoia and wandering, the most difficult to manage, but they also frequently pose added risks to others, most notably to the caregivers themselves.
And just like the causes of sundowning are not well understood, the search for effective treatments is also ongoing. One difficulty is that sundowning can look different across different individuals, and an effective treatment for one individual might not necessarily work for others. For example, while one person with sundowner syndrome may experience combined symptoms of acute mood swings, frustration, anger, fear, depression and resistance to attention, another person may only experience one or two of those conditions, or different symptoms altogether.
If sundowning continues to be a problem, you may want to seek medical advice. While sundowning may simply be occurring alongside your loved one’s dementia, a medical exam may also identify a specific cause of the irritability, such as pain, a sleep disorder or other illness, or a side effect of medication.