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Caregiving Reality

Dealing With Sundowning

Elderly couple, photo credit Garry Knight

Credit: Garry Knight

Sundowning is a problem that develops with some[1] dementia patients. The person with sundowning manifests increased agitation, confusion, and restlessness in the latter part of the day. It can begin in late afternoon or any time through the evening. This typically appears in the middle stages of dementia and subsides as the disease progresses into the severest stages.

The symptoms of sundowning can create an incredibly taxing situation for a caregiver. At the end of the day (pardon the pun) you can have done everything right according to the very best experts and still face a loved one with a terrible case of sundown syndrome. But it is not your fault. Sometimes, that is just the way it is.

When I was caring for my grandpa, we had a difficult time with sundowning and it wasn’t anybody’s fault. Grandpa was in his own home—a familiar, quiet, and well-lit location. If there was any situation that should have helped prevent sundowning it was ours, and yet through the middle stages of his Alzheimer’s sundowning remained a regular occurrence.

Soon as the afternoon began to wane Grandpa would become agitated. It was as if some cloud of dread gathered over him, as if the world had suddenly gone wrong. He needed to fix “things,” and he would go around the house trying to find all the undefined things that needed to be (in his words) “fixed and set right.” He would go upstairs and downstairs. He would take things in and out of rooms. He would call incessantly, sometimes for help when there was nothing he needed help with. This degraded into endless calling for me or Grandma, with no comprehensible purpose behind it. The routine exhausted him, it tormented him, but it was a compulsion he could not shake. He didn’t want to do it—he had to do it.

Are you in a similar situation? In spite of your best efforts to prevent it, do you have someone who ends every day with sundowning? Are you at your wits end trying to figure out how to cope? If that is you, then I have some practical and simple advice, drawn from my own experience.

These are my suggestions:

  • Make peace with it. If you have tried, and can’t alleviate the sundowning by following practical preventative steps, then don’t beat yourself up about it. Don’t blame yourself for what is happening, and don’t blame the person with the dementia either. Deep down they don’t want to do it, but the disease is making them. The common cold results in a runny nose, and dementia can result in sundowning. If you don’t get mad about a runny nose, then you understand how pointless it is to get mad about sundowning.
  • Let go. When someone is sundowning there is a natural impulse to try to make them stop, but you need to let go of that urge. Trying to control a sundowning person can lead to an argument over what they are agitating about, or a fight to stop their pacing. Instead of fighting the sundowning, recognize that the person needs an outlet for their agitation. If Grandpa wanted to drag a kitchen chair around the house, I let him. If he wanted to take all the garbage cans out of the bedrooms, I let him. If he wanted to empty out his sock drawer, I let him. All those things (and many more) could be irritating, but they were his ways of processing the agitation, fear, and confusion that he felt.
  • Be calm. Of all the things one ought to do, being calm in the middle of a sundowning episode may be the most difficult. When someone is constantly shouting for help, or taking all the cushions off the couch, being calm can be very hard. But remember you are dealing with someone who is struggling with a deep sense of mental unease—even fear. The best way you can stabilize the situation is to project a demeanor of calmness and assurance. If you respond with agitation to their agitation the negative feelings feed on each other and everything gets worse. Instead, offer calm assurances, cheerful replies, and kind distractions.
  • Take care of yourself. Don’t preoccupy yourself with the sundowning. It is the way life will be, so ignore it the best you can. Sit down and read a book. Go make supper. Put on headphones and play relaxing music. The sundowning will be there every day, or most every day. Don’t let it rule your life, or your thoughts.
  • See the good side. It is really difficult to see the good side of sundowning when you are in the middle of a bad episode, but try to focus on the better points. I discovered that if Grandpa exhausted himself with a late afternoon episode of sundowning he could go to bed easier for the night because he was tired out. Exercise is good, and if someone manages to exhaust themselves by pointlessly going up and down the stairs a dozen times, or dragging a kitchen chair around the house—well, that just means they got their exercise for the day.

In the end, the key to making it through the sundowning period of dementia is patience and perseverance. The struggle with sundowning is a particular season in dementia, and it will pass. Until then, surround yourself with supportive people who will listen when you need to vent your frustrations, who understand what you are going through, and who encourage you when you’ve experienced a particularly bad episode. In the end, you can make it through.

What is your sundowning story? Do you have any suggestions, frustrations, or questions? Share in the comment section below!

  1. There is no clear consensus on the exact prevalence of sundowning. I have seen a wide range of figures, the highest being 66%, with other sources stating a much lower precentage. Example: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3246134/#__sec3title  ↩
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