Sundowning refers to behaviors seen in persons with dementia that usually occur at the end of the day. Many clinicians and caregivers/care partners seem resigned that this will simply happen and that there is nothing that can be done to prevent or manage it. Which is why I hate the term, and prefer to think of sundowning as “tired and scared.”
Where did the term “sundowning” come from?
When I worked in long-term care as a nursing assistant 30 years ago, night shift was expected to get a portion of the residents up before the end of their shift. This resulted in some people getting up at 5 or 6 o’clock in the morning and staying up for at least 12 hours. These residents would be exhausted by supper time. They would also be sitting in the common area, with other tired residents who would be crying out. The exhaustion plus the noise caused some residents to become very upset and agitated. These residents would try to leave the area (can you blame them?). Nurses and physicians who worked in long-term care noticed the uptick in these behaviors during late afternoon and early evening, and the term “sundowning” was born.
Myth #1: Sundowning always happens at sunset
Behaviors can occur at any time, and it is helpful to note patterns. Some people may show irritability and anger late in the morning, or in the middle of the afternoon. Irritability often occurs when the person living with dementia is trying to handle environmental or social demands that overwhelm the brain. I use the analogy of working short-staffed. If I am trying to do my job with half of my coworkers missing, I am going to become more tired and cranky as the day goes on. I am going to make mistakes. I may even try to hit someone because I am so frustrated. A person living with dementia who is working with a large loss of brain nerves feels this way as the day goes on, or when they are placed in social situations with a lot of activity.
What to Do
Be aware of behavioral patterns. Put rest periods into the daily schedule (as long as the rest periods do not create problems with sleeping at night). Many caregivers/care partners tell me, “She sleeps too much.” When the remaining brain cells are doing two, three, or ten times the work…the person IS GOING TO BE EXHAUSTED! He may take a little cat nap after breakfast, followed by one after lunch, and may want to go to bed at 7 pm and sleep until 7 the next day. Unless there is a medical reason (like a medication that may be too sedating), go with the flow.
Myth #2: Sundowning is unavoidable. It is going to happen and there is nothing I can do about it.
I think myth #2 comes from clinicians, who just shrug when family caregivers broach this topic. I disagree. There may be some detective work that has to be done, but the detective work can help caregivers/care partners find ways to prevent and manage the behavior.
What to Do
Again, keep track of what behavior is happening and when. Is the behavior wandering? What may be triggering it? We had a situation where one nursing home resident would sit near the door of the locked Memory Care Unit. She was usually quiet and “people watched.” When my students and I began the clinical rotation, there was a delay with getting us magnetic badges so that we could unlock the doors and enter or leave. For the first week, I asked one of the staff to let us out. The students would congregate around the doors, waiting for the staff person and for me. The resident began standing with my students and becoming quite upset when she was shooed away from the door. She would yell and resist all attempts to redirect her away from the doors. The solution? The students waited over by me and we followed the staff member to the door and quickly exited, while another staff member distracted the resident with snacks.
By noting the specific behavior and pattern, you can introduce a new activity or routine prior to the event. Bob DeMarco, in one of his Alzheimer’s Reading Room posts, changed Dotty’s behavior of obsessively cleaning every night around 9:30 pm by giving her ice cream at 9 pm.
Clues that It May be Fear
In my post about illusions and hallucinations, I describe how poor lighting, reflective surfaces, patterned surfaces, and even cluttered environments can cause people with dementia to mis-interpret their surroundings. The wandering or agitation may be in response to something scary or disturbing to the person with dementia. However, one area that few clinicians ask about is previous violence or domestic abuse. People move backward in time as newer memories are lost but older memories become more accessible. One of my patients habitually hid in a back closet when the home became darker at dusk. Her daughter shared that this lady’s first husband had been a heavy drinker and would come home after dark and begin to hurt his family. The daughter put lamp lights on timers, and the lights would come on long before sunset. The hiding behavior lessened and eventually stopped.
Myth #3: Antipsychotics are Appropriate for Sundowning
Only as an absolute last resort!!!! I prefer to help family caregivers and carepartners figure out what may be going on and then changing up schedules and environments. I had one spouse tell me, “Why do I have to change? He is the one with dementia!” Precisely. The person with dementia CANNOT change. You can be right, or you can be happy. I’ll take happy every time.
I prefer to try antidepressants with anti-anxiety properties first. My rationale? Neurodegeneration. When brain cells die, the levels of brain chemicals goes off balance. My choice depends on the person’s previous experience with antidepressants and their other health issues.
If NOTHING is working, and the behaviors are being triggered or worsened by psychotic symptoms like hallucinations, an antipsychotic may be the answer. Atypical antipsychotics like quetiapine are often the best tolerated. I avoid risperidone because of the risk for Parkinsons-type behaviors (such as problems moving or swallowing). HALOPERIDOL SHOULD BE AVOIDED!!! Haloperidol has a high likelihood of causing weird, uncontrollable behaviors like pill-rolling, lip smacking, or head rolling. It is one of the older drugs; personally, I have no idea why clinicians are using it for persons with dementia.
I welcome comments and suggestions for how other caregivers and carepartners have handled sundowning!