The elderly woman had been normal all day, my colleague told me, tolerating it well when a tube was placed in her bladder to measure her urine. But that evening, she was found wandering the hospital halls yelling in Italian, carrying her urine bag under her arm thinking it was her purse, traumatized that hospital staff were trying to take it away.
Another night in the hospital, a female Sri Lankan colleague saw an elderly man who was convinced she was a Nazi soldier. Reassurances and even a plea from the doctor -- “How could I be a Nazi? I have brown skin!” — could not persuade him otherwise. The next day the patient was back to normal, incredulous when told about what transpired the night before.
An 80-year-old man — I’ll call him Bill — came to our emergency room after a fall. He seemed fine and his tests were negative, but his family wanted him admitted over night for observation. That evening, he began shouting out, repeatedly wanting to get up and walk to the bathroom (forgetting he had just gone). Our calming efforts only riled him up more.
This erratic nighttime behavior is called "sundowning." Staff in hospitals and nursing homes always worry what will happen as twilight approaches. As the sun sets, many elderly patients can change drastically: They can become extremely confused, agitated, not know where they are, and even hallucinate. In other words, they exhibit signs of delirium, a confused state that can lead them to do things they otherwise wouldn’t.
Experts agree that confusion and agitation are more common in the evening and at night. But there is surprisingly little scientific consensus on what sundowning actually is.
The debate is in how much sundowning and delirium are related. Some experts think they’re the same thing, others separate but related entities.
It’s hard to study sundowning without a clear definition and diagnostic criteria. Experts can’t even be sure how often it happens. A recent review found a rate of anywhere from 2.4 percent to 66 percent.
Dr. Eyal Kimchi, a neurologist at Massachusetts General Hospital who studies delirium (and a friend of mine from medical school), says we are still in the early stages of understanding sundowning. “There are probably many types of delirium — delirium after operations, delirium in the intensive care unit, delirium tremens associated with alcohol withdrawal — and some we haven’t separated out yet. Sundowning may be another one of them.”
We do know a few things, though. Elderly people with memory problems are the most likely to sundown, especially those with bad Alzheimer’s dementia. We know prevention works much better than treatment. Patients in hospitals and nursing homes are particularly prone to becoming agitated in the evening.
But being prone to sundowning isn’t enough — something has to tip the balance, like not being able to see or hear well. Other environmental factors can do it too, like being thrust into unfamiliar hospitals with bright fluorescent lights, having sticky heart monitors on your chest and alarm bells going off at all hours of the night.
Dr. Sharon Inouye, Harvard professor and director of the Aging Brain Center at Hebrew SeniorLife, also pointed to a dizzying array of barely pronounceable biological factors thought to contribute, including “disruptions in circadian rhythms, nadirs in cortisol, stress hormones, sympathomimetic neurotransmitters, melatonin or fluctuating cytokines.”
If syllable count is any measure, this is as complicated as it gets.
Which is why experts like Inouye and her colleagues developed a series of interventions to address the various factors that contribute to delirium, called Hospital Elder Life Program (HELP). (CommonHealth covered aspects of the program earlier this year.)
Many hospitals have similar friendly sounding protocols. Beth Israel here in Boston uses GRACE (Global Risk Assessment and Care plan for Elders). And there’s NICHE (Nurses Improving Care for Healthsystem Elders), a nursing protocol found in hospitals around the country. While they haven’t been studied specifically for sundowing, they are often used in hospitals to help prevent it.
All of these protocols are similar, and consist of various ways to keep patients oriented, for instance, keeping hearing aids and glasses within reach, getting patients out of bed, making sure they stay hydrated and well fed, avoiding medications that cause confusion, managing pain and reducing noise to allow patients to sleep.
It sounds simple and obvious, but these factors are so interrelated that changing one has only a tiny effect. Its power is in the package. HELP is now being used by more than 200 hospitals nationwide and abroad.
Still, it’s an uphill battle convincing hospitals to invest in more staff to implement these protocols. “It’s the best thing for the patient and for maintaining quality,” Dr. Hollis Day, currently at University of Pittsburgh Medical Center but incoming chief of geriatrics at Boston Medical Center, told me. “It's hard to pay for something that doesn’t happen.”
But this is changing. Accountable care organizations are more common, so hospitals will get penalized if patients stay in the hospital too long.
“The financial implications of increased length of stay is one thing motivating hospitals to try to prevent delirium more systematically,” Kimchi, the MGH neurologist, said.
Implementing delirium precautions isn’t easy. It requires a change in mindset away from medications to behavioral interventions. “Doctors can’t always order therapeutic sleep protocols at night or reorientation activities three times a day,” Inouye said. “Giving a sleeping pill is so much quicker than a back rub, herbal tea and soothing music, but much more hazardous.”
While hospitals are changing, friends and families can get engaged in the effort as well. So what can you do to help prevent sundowning?
Ask what protocols the hospital has in place to detect and minimize sundowning or delirium. There’s no data on which is the best, but the important thing is checking that a hospital or nursing home is working to prevent and detect sundowning and delirium.
A 'Sense' Of Security
Bring hearing aids, eyeglasses or dentures to the hospital. This helps keeps patients involved in what’s going on, not to mention able to eat. But keep track of them; these items can get lost in the hustle and bustle, and can be expensive to replace.
Make sure the doctors and nurses know what normal behavior is for you or your relative. Is your relative usually sharp as a tack? Or is it normal for them not to know what day it is? This helps the medical team recognize sudden changes.
Help patients stay informed on world events or maintain hobbies like crosswords or knitting. Pictures of loved ones or other familiar objects can make the hospital seem less foreign. These steps help keep people oriented and calmer.
Work with doctors, nurses and physical therapists to understand how your family member can stay active. Encourage them to take care of themselves by showering or brushing their teeth, or walk with them around the room -- if that is OK with the hospital staff.
Dr. Deborah Rosenbloom, assistant professor at UMass College of Nursing, researches family involvement in caring for patients with delirium. She acknowledges that many people cannot stay with their relatives all day — they might live hours away or need to work. In those cases, Rosenbloom suggests phoning the medical team at admission and then checking in daily.
In Bill’s case, we tried bed alarms, which made things worse. We tried dimming lights and minimizing noise so he could sleep. His bed was near the nurses’ station but we still worried he might jump out of bed and fall before someone could catch him.
At 11 p.m. one recent night, we called his family and discussed two options: Sedate him with medications to keep him from hurting himself — a last resort which might worsen the problem; or send him home. All the crucial tests were negative, so we agreed that the safest thing, despite the late hour, was for him to go back home to familiar people and a familiar environment. I never heard from him again, but I hoped the familiarity helped him feel settled.
David Scales, M.D., Ph.D. is a third year resident in internal medicine at Cambridge Health Alliance.