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Sundowning and their exhausted caregivers

What makes frail seniors delirious when the sun goes down? It's time to shine a light on a growing problem that takes caregivers to the edge.

For the nearly three quarters of a million Canadians with dementia, hospitals are frightening places.  And at nightfall, anxiety gives way to restlessness and delirium – that in turn puts fear into hospital workers and family members alike.

Older patients – particularly those with dementia – are at risk of becoming agitated at night.  As soon as night falls, they become confused and restless, at times screaming out loud.  Some of them hallucinate.  They are unable to sleep, and are apt to climb over the side rail of the hospital bed.  If they leave their room, they pace and wander the halls of the hospital ward or the nursing home.  The next morning, they fall asleep and remain sleepy for the rest of the day until it becomes dark again.  

We call it sundowning because it happens as soon as the sun goes down.  Although it's less likely to happen in the frail senior's home, it can happen there.

Somewhat surprisingly, doctors aren't sure how often sundowning occurs.  I've seen estimates that range from a low of 2.4 per cent to a high of 66 per cent.  Although we think it's more likely to occur in hospital, one study said that 28 per cent of people with Alzheimer's who live at home showed some evidence of sundowning.  The problem with pegging the incidence is that researchers have not agreed on what sundowning actually is.  There is no agreed-upon definition.

Part of the problem is that there's sundowning and there's delirium. Delirium is confusion associated with shaking, fast heart rate, sweating and dilated pupils.  It looks a lot like sundowning and may be related, but some experts think it's a completely different condition – and mixing the two together is like apples and oranges.

There are several theories as to why the phenomenon occurs. The fact that agitation occurs at night suggests disruption of the body's internal clock. There's evidence that the pineal gland (the part of the brain that makes the chemical melatonin) – which is critical for resetting your body clock – is impaired in people with dementia.  Another theory is that frail seniors dream almost as soon as they fall asleep and have more frequent and abrupt awakenings. It is possible that sundowning is confusion caused by constant flipping from dreaming to wakefulness.  

Fatigue and sleep deprivation may play a role.  Poor lighting and increased shadows may confuse people with dementia. Hospitals have harsh lighting and lots of noise from alarms.  We also don't let people in hospital get much sleep at night. Add to those other factors like fever, urinary tract infections, pneumonia and other factors, and you've got a recipe for serious problems.

Sundowning is dangerous to patients because they might rip out the intravenous drip from which they receive antibiotics.  They might fall and break their hip.  It can be very traumatizing to loved ones.  If the patient is up all night, there's a good chance the caregiver is up all night too; that affects their health. It is extremely difficult for hospital staff who have to devote extra resources to watching them and preventing them from running off.  It is also disruptive to other patients whose sleep and recovery from their own health problems is disturbed.

Experts say giving hospitalized patients and nursing home residents daily routines helps minimize sundowning by reducing surprises that cause agitation. Exercise is helpful too, but the most strenuous activity should take place in the morning.  Caffeine should be avoided, as well as medications the increase agitation. It may be helpful to reduce the noise from televisions and radios beginning in the late afternoon and early evening.  Visitors should not come in the evening hours.  

Hospitals have programs that reduce sundowning. The Hospital Elder Life Program (HELP) prevents delirium by keeping hospitalized older people oriented to their surroundings, making sure they get enough fluids and nutrition as well as sleep and keeping them as mobile as possible.  It's being used by more than 200 hospitals in the US and Canada – including McKenzie Health (in Richmond Hill just north of Toronto) and Health Sciences North in Sudbury, Ontario.

Dealing with dementia is tough enough.  Sundowning makes it even worse.  People affected by the condition - including caregivers - need all the help and understanding we can muster.

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