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Barbara Garwood: A caregiver’s life

Shedding Light on Sundown Syndrome

With the change to Eastern Standard Time coming Nov. 6, it seemed like the perfect opportunity to talk about sundowning, or sundown syndrome, a mystifying constellation of symptoms experienced by people with dementia.

This term was initially used to refer to patients hospitalized in critical care units where the lights are always on and night and day run together, causing confusion and disorientation. More often now we hear the term used in reference to people with dementia. Let’s take a look at the definition of sundowning, what triggers it, and ways to prevent or minimize it.

According to the Alzheimer’s Foundation of America, “Sundowning is a dementia-related symptom that refers to increased agitation, confusion and hyperactivity that begins in the late afternoon and builds throughout the evening.”

A typical manifestation of sundowning goes like this:

The clock strikes 4 p.m.

Your mother checks the front door to see if someone is there.

She does not see anyone there and becomes agitated.

You reassure her that that no one is at the door.

She seems unsure of your answer and paces throughout the house.

Your mother checks the front door to see if someone is there.

She does not see anyone there and becomes more agitated.

You reassure her that no one is at the door.

She seems unsure of your answer and paces throughout the house.

And on and on, with her agitation increasing each time.

The caregivers out there are nodding! Yes, this is what happens in the late afternoon or around suppertime. This may continue for an hour or two, much to the exasperation and exhaustion of both the caregiver and the person receiving care. While most caregivers can describe how their loved ones behave as the day progresses, they may have no idea why their behavior changes or what they can do about it. First, let’s look at symptoms.

Sundowning may cause:

Restlessness (inability to get comfortable or sit still);

Increased confusion (difficulty with word-finding or knowing who, what, where);

Increased agitation (more fretful than usual over things that seem insignificant);

Suspicion (“Someone has been in my room.” “My wallet is missing.”);

Rummaging (searching through dresser drawers for heaven knows what).

Why is this happening? Researchers believe that dementia may damage the body’s internal clock, causing a disruption of sleep-wake cycles and short-circuiting the signals that tell our bodies to slow down and get ready for sleep. It is also theorized that sundowning may be set off by the “fuzzy” feeling of waking from a nap while dreaming. People with dementia may have difficulty separating the dream from reality.

An additional factor is the feeling of pure exhaustion experienced as the day wears on. Dementia is draining. So much energy is spent trying to remember what can no longer be recalled, failing at simple tasks throughout the day, and the frustration that those failures bring. By afternoon’s end, irritability and agitation have come for a most unwelcome visit.

Here are some tips on making this time of day more tolerable:

Plan activities or outings in the morning.

Do simple, calming activities from mid afternoon to bedtime.

Avoid naps in the afternoon and evening to increase the need for sleep at bedtime.

Increase indoor lighting before dusk as it may help reset the body’s biological clock.

Keep noise levels at a minimum (turn the TV down or off; let the grandkids play outside) to avoid agitation.

Avoid caffeine after lunch time so it does not interfere with normal sleep.

Set a daily routine and stick to it as much as you can.

Also, consider keeping a simple journal, noting what happens on the good days and what happens on the bad days. You may discover a pattern that will allow you to make small changes with big results.

Last, but not least, try to stay calm. Adding your exasperation to your loved one’s agitation will only result in increased frustration for everyone. Easier said than done, I know, but take a deep breath and give it all you’ve got. After all, you may receive the ultimate pay off — a peaceful evening and a good night’s sleep!

Contact Barbara Garwood at bgarwood@trinityathome.net.

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