- Sundowning is a symptom of Alzheimer’s and other dementias. It often happens in the twilight hours of afternoons and going into the early night
- The symptoms of sundowning are similar to those of other dementias in the early to middle stages
- Delirium is a condition of mental confusion and often starts suddenly after a protracted illness
- Delirium occurs abruptly; Dementia takes a much longer time to develop
- Caring for a person with sundowning demands can be exhausting
- The treatment for sundowning is not established 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.
Sundowning has been described as an eruption of hyperactivity, confusion and agitation that people with dementia 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 produces hazards such as falls, wandering, and aggression that causes serious injury to others. Studies of nursing homes have shown that a high number of harmful incidents occur between six and eight p.m.
Sundowning shares the same symptoms of early stage Alzheimer’s, principally memory deficiencies and confusion, until sunset-time. When the sun starts setting, it acquires its own set of symptoms. Sundowner syndrome symptoms are estimated to occur in up to 20% of dementia patients.
A confounding side to sundowning amongst the families of persons with dementia is that its symptoms imitate those of other dementias. It is thus frequently confused with Alzheimer’s since it is “asymptomatic” in its early stages.
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 term “delirium” is explained hereunder).
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 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, tiredness and stress; it owes it to hormonal fluctuations in sick or ill people. Fatigue, low lighting, and increased shadows at sundown that 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”.
- Other culprits leading to dementia risk, though not always sundowning, include heart disease, alcohol or substance abuse, smoking, and ailments such as diabetes and heart issues.
- 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; these generally attempt to reduce the level of noise and boost the lighting in the areas occupied by sundowning patients.
- 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 similar to those of other dementias in the early to middle stages. Particularly pronounced symptoms are as follows:
- Mood swings, paranoia; delusions of being watched, a suspicious deportment
- Disorientation, insecurity, and being argumentative and demanding
- Becoming combative, 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
Delirium is a condition that can start suddenly, commonly after a protracted illness, a surgical procedure, or through the consumption of certain medications. Its main characteristics include serious confusion, disorientation, disorganized perception, memory loss, an amplified capacity for distractedness, and a combination of hallucinations and frightening dreams that remain after awakening.
1 in 10 elderly hospitalized patients experience a temporary state of delirium. Particularly susceptible to delirium are elderly people with poor vision and/or hearing, dementia patients, and those who have sustained trauma to the brain.
Studies have shown that an accurate diagnosis of delirium is missed in half of all cases, and unlike most types of dementia, delirium is treatable.
Treatment starts with identifying and correcting the underlying causes, much in the same manner as attempting to mitigate the harsher symptoms of dementia with prescription and over-the-counter medications.
And while sedatives can do additional harm and should be avoided, pharmacological treatments include neuroleptics when the patient is experiencing agitation, delusions, and hallucinations, and Benzodiazepine when alcohol withdrawal is the risk factor.
The main distinguishing factor between delirium and dementia is the speed with which each condition occurs. While dementia typically takes months and years to develop, delirium occurs in an abrupt and unpredicted manner, ordinarily over a few days or weeks.
And while for example a person with Alzheimer’s undergoes a restrained and slow process of decline, a person with delirium suffers symptoms that fluctuate, at times intensely, during a single day or week.
The common characteristics are the ones that pose the greatest challenges though, since they often result in delirium being difficult to discern and frequently confused with dementia.
People in general enjoy sunsets. They 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, leading to sleep.
It is naturally not so for many of our aging population who are afflicted with sundown syndrome. For them, sunsets are about heightened dread and scorching anxiety.
Caring for a person with sundowning demands the ultimate in 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 horrid experience that is almost impossible to get used to. It is exhausting and entirely mortifying.
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 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 mornings 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.”
I did my best to make some comforting noises to calm Linda down, but by then she herself was quite animated. “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 antics 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.”
“You really had to make changes,” I exclaimed. “You had to turn your life upside down.”
“Thank you for saying that. We certainly don’t get any recognition from Mom these days.”
“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.”
“Thank you, Linda. I feel I am now better able to send you just the right caregivers to help you and your siblings; compassionate, for sure, but also tough, no-nonsense caregivers.”
It is probably wise to preface this section by saying that up to today, researchers know very little 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.
And like Alzheimer’s and other dementias, there is no cure -merely attempts at soothing the symptoms and delaying the progression of the underlying diseases.
Like Alzheimer’s, the exact roots of sundowner syndrome remain elusive. While academic and clinical research plods on relentlessly, 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 generated 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.”
Hired caregivers can burn out so easily in an environment like that. The frustration often rubs off on them even in the first few days of service. 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.
Many influences have been advanced over the years as possible causes of sundowner’s syndrome, but not one of them has necessarily been greater than the other.
And just like the causes of sundowning are not well established, developing more effective treatments has been an ongoing process for many years now. The problems have so far included the fact that there haven’t been complementary approaches to possible solutions, for it’s not like developing medications for migraines, blood pressure issues or diabetes, and what works for one individual doesn’t necessarily work for others.
As an example for the uncertainties involved in developing generalized treatments, while one person with sundowner syndrome may experience a combined symptom of acute mood swings, frustration, anger, fear, depression and resistance to attentions, another patient may only experience one or two of those conditions, or different symptoms altogether.
This is not to say that adapting an overall healthy lifestyle does not influence all patients in a positive way. Love, good nutrition, well-managed hydration, regular exercise and as much quality sleep as possible will in all cases go a long way towards mitigating some of the harsher aspects of sundowning.
As for family and professional caregivers, once again I find myself tipping my hat off to you in a profoundly felt salute to your unending compassion and self-sacrifice. Indeed, the feeling is simply one of repeatedly asking ourselves what we would do without our caregivers -and not only how would our loved ones manage without you, but how we would all fare as we age.