What is Sundowning?
Sundown syndrome, or “sundowning”, is a term describing an eruption of manic agitation that affects people with dementia or cognitive impairment experience around sunset. This surge of bustling activity is a well-known behavior at living facilities, often triggered by the comings and goings of visitors, the humdrum of dinner time, and staff in shift-changing mode.
Often referred to as “nocturnal delirium”, i.e. disorientation or confusion at nighttime, and estimated to occur in up to 20% of Alzheimer’s patients, sundowning is “asymptomatic”, i.e. without its own symptoms. Ordinarily, and prior to sundown, it shares a few of the same symptoms as early stage Alzheimer’s, notably memory loss and confusion. When the sun dips into twilight, and often extending into the night, the hyperactivity begins and, depending on the individual and the severity of the underlying dementia, it can lead to agitation, nervous pacing, disrupted sleep-wake cycles with vivid hallucinations, wandering, and combativeness.
The greatest prevalence of sundowning occurs in patients with advanced dementia, and at home rather than in institutions. It is thought that sundowning results partly from fatigue, stress, dimmed lighting, and increased shadows at sundown. One theory connects the symptoms of sundowning to a disturbance in the body’s “internal clock”, also referred to as the “circadian timing system”; that theory suggests that the cognitive impairment caused by the dementia sets off nighttime confusion between being fatigued and needing to sleep, and being rested and ready for activity.
Ever since Mom’s diagnosis, some three years ago, I’ve had an agency provide caregivers to look after her at my home. Mom -her name is Sarah- is all the family I have. She cared for me all my life with such tenderness and devotion that I always knew that when the time came for the roles to reverse, I would rise to the occasion with all the love and caring that I could conjure up. Thankfully, Dad had left her with sufficient funds to enable us to have her looked after by professional caregivers in the comfort of our home. I never for one minute entertained the idea of placing her anywhere else.
I was particularly lucky in having the main caregiver, a gentle yet sturdy woman, take charge of Mom ever since she started showing signs of cognitive issues. For a long time prior to that, I had attributed her forgetfulness to mere signs of aging, so that the diagnosis, at the relatively young age of 68, came as a shocker. Still, until recently, she was compliant and easy to manage. Although I lead a very active life as an advertising executive, I am used to spending much of my spare time with her, often giving her caregiver some time off to re-energize.
Sarah’s main caregiver:
When Sarah’s easy-going demeanor started to take a turn for the worst, we thought it was just a phase, and that she would bounce out of it. She didn’t though, and even her doctor was perplexed at how rapid her decline was after that. Major changes in her behavior started showing up, week after week.
At first, we noticed that at between four and five in the afternoon, she would get restless and surprisingly aggressive. A couple of months after that, her doctor told us she was showing signs of something called sundowning. Both her daughter and I spent hours researching and reading up on that, trying to discover how to deal with it and what would be best for her.
We read that, for example, nothing calms down an irritable Sundowner’s patient as exercise and a familiar routine. We thus devised a morning routine whereby we took her out on walks, followed by some indoor activity, like helping me with my house chores, an early and light lunch, then another outdoor activity when the weather permitted, and so on. At around four in the afternoon, we also started increasing the lighting in the areas she frequented. We did everything by the book, but her jitteriness wouldn’t subside. On the contrary, she would pace around the living room and bedroom, back and forth endlessly, muttering to herself, the stress and fear showing on her face and movements.
One afternoon, a day before I had to take an overnight trip to meet with a client, her demeanor changed drastically. She showed a fixed and ugly-looking grimace on her face, heightened disorientation and paranoia, and she paced back and forth furiously, gritting her teeth menacingly.
I was traumatized. I called her doctor, and after a two-hour wait managed to get him on the phone. Sarah was on a special drug for Sundowner’s that consisted of antipsychotic chemicals with dosages that were tailored for her. Her doctor said I should give her the medication then instead of at bedtime and, if she was still “upset”, as he put it, to give her another pill at bedtime.
What perturbed me the most was that her caregiver was off for a couple of days, and I would have to leave Mom the next day with a new, fill-in caregiver.
Sarah’s fill-in caregiver:
My coordinator at the agency assigned me to look after Sarah on an overnight job, pending the return of her primary caregiver. I had cared for Alzheimer’s patients twice before, the most recent one for nearly a year, so I didn’t think much of it when I was told that my patient had dementia and could be a little non-compliant, the understatement of the year, as things turned out.
Sarah walked me through my duties at a time when her mother was napping. Although she kept repeating that her mother had become somewhat aggressive lately, we discussed what I should do if things got unruly. Then Sarah awakened and behaved quirkily, to say the least, though still within bounds I could handle, so I told her daughter she could go, as she she’d said she was already running late for meetings.
Exactly an hour later, at sunset, the demons got visibly riled. Sarah got extremely agitated, angry, scared and disoriented, and she paced erratic-style all around the house while humming a weird refrain. I was scared stiff and started praying that she would go to sleep once I gave her the pill her daughter had left for me.
Sarah next-door neighbor:
I was sleeping when I heard shuffling in the yard right outside my window. At first I thought it might have been a rodent of sorts, but my curiosity won over me as I got up, opened the window and looked outside.
I couldn’t believe my eyes at the sight that greeted me. There she was, hair utterly disheveled, stooped over a shrub, covered only with a flimsy nightgown, her frame that of a young girl. At first I didn’t recognize her, but when I put a robe on and went outside, I recognized her from having seen her in the adjoining yard on countless occasion.
Sarah’s fill-in caregiver:
The banging on the door was not a dream. It was only too real and persistent. Whoever was ringing the bell and banging on the door wasn’t going to simply go away. I went grudgingly to the door and opened it with the chain still on.
“I believe this lady belongs here,” the neighbor said, his voice not too friendly.
“Gosh, yes,” I exclaimed, not knowing what else to say. There was Sarah, this time docile as a lamb, perhaps out of fright, or who knows what else. I couldn’t apologize profusely enough to the neighbor, as I ushered Sarah in. I would call her daughter, I thought to myself. This wandering business is over my pay grade.
In the meantime, Sarah was looking at me quizzically, perhaps wondering why all the commotion.