SUNDOWNING
SUNDOWNING
Sundowning (sundowner’s) is a somewhat odd yet sensible term for what occurs for many people with dementia as the day approaches its end. What happens typically in late afternoon or evening is one, several, or many of these reactions: irritability, confusion, uncooperativeness, sadness, desperation, even paranoia, & poor functioning generally. For Beverly, as I think for most, sundowning was irregular and somewhat unpredictable.
Most days sundowning did not happen with her. Yet in that final difficult week before she moved into a facility, sundowning dominated every evening, beginning shortly after dinner and never quite ending until she was close to sleeping. That week ended with her fall down the stairs (see first blog title “From eternity to here”). Every evening she found a reason to be angry with me. My “slow learning” of how to react to her was part of the issue, by which I mean that it was my ineffective reaction to her, treating her as though she were normal and disagreeing with some statement or action. Better (as I eventually learned) that I should simply agree (“happy lies”) with her. The most specific memory about a particular aggravation of her in that week is that I finally reacted to her peeing on our backyard deck by saying (more nicely than one might expect): “Honey, if you go out back to pee, would you please do it in the grass rather than on the deck so I don’t have to clean it up.” That resulted in her being angry, an upset that would not go away. And my efforts to talk to her into calming down were ineffective and probably more aggravating of her than helpful.
On an earlier occasion many weeks prior to that and very late (around 11 PM), she was angry over something else that would not be a cause of anger for most of us in normal circumstances. She was angry and went out the front door late at night; I wanted to keep track of her so she did not wander off and get lost, precipitating a search. So I went out the door too and followed her through the neighborhood at a distance; that only upset her more. She tried to open the door on a neighbor’s pickup truck, apparently to get away from me. That made me very nervous as I knew this neighbor always carried a pistol in his pocket. Happily nothing came of that. She kept telling me to go away and I stayed 20 feet or so away. Sundowning prevailed for at least an hour out in the dark street.
But amazingly a near neighbor was up doing something near midnight and was in her driveway near a side door. Beverly approached the neighbor and told her she was frightened of David, who was following her. “Could you (the neighbor) get him to go away.” After a short discussion that I was not party to, I did hear this much at the end. Neighbor: “Now Beverly, you are a Nurse. You know what sundowner’s is; that is what you are having now.” That somehow brought her to sensibility and we were soon headed home for a peaceful end of the night.
I was recently reminded of the sundowning issue by a friend with middle stage Alzheimer’s. This person was generally very coherent and thoughtful. He said, “They told me I had sundowner’s.” That made it sound like a diagnosis, so I spent some time explaining what sundowning was. And I finally made the point to him that, knowing what was happening to him would result in better functioning for him. In reality, I still presume that this is like many of our behaviors; even if we kind of understand them, they happen anyway.
Sundowning was certainly common in Beverly’s facility among some of the residents. Most evenings there were always a few residents in an agitated state, often desperately wanting to get out and go home or wanting to take care of their children who were left in the car without care, and so on. Or simply irritable.
I made this note the first Spring Beverly was in this facility, which was around 3 years ago (pseudonyms, of course), illustrating a level of chaos not uncommon after dinner:
“Usual insanity in this place this evening. (I was outside of Beverly’s room sitting on a bench). John went in Tom’s room and (when Tom woke up) Tom was yelling extremely loudly that he was “gonna f…in kill him”. A caregiver got John out, then left to care for another resident. John went right back in Tom’s room and there was another round of screaming “gonna f…in kill him.” Another retrieval by a caregiver and no one wa harmed. Shortly after that, Beverly was now in her night clothes and I was going into her room. Bill came by, pushed his way partially into her room, very forcefully trying to move me out of the way. He became angry and said that this is“my room.” I thought he was going to force us out of the room. I repeatedly said that it was Beverly’s room. By luck of circumstances, he suddenly appeared to read Beverly’s name on the door; then he turned and just walked off.” These, and even more events that same evening, were examples of sundowning. There was extra confusion about whose room it was and irritability bordering on violence.
The experts recommend some management of the situation, such as encouraging an afternoon nap and providing a calm, simple end to the day. And, of course, following the simple rule previously discussed of being agreeable, never disagreeing unless there is a clear safety issue.
So people with a diagnosis of Alzheimer’s (or other similar conditions) are prone to sundowning—irritability, poor functioning, etc. late in the day. What causes that? There seems to be no definitive answer. Fatigue is the most common suggested answer; they are tired as the day is ending. It seems to me to be an interaction between fatigue from the day, some of which (I think) follows from their awareness of the deterioration of the brain. That latter part is a matter we do not think about enough. For the person with dementia, managing one’s thoughts and behaviors must be especially fatiguing for them as their world becomes more difficult and confusing through this “falling apart” of their mind. We know that there is an extended period in the deterioration of the brain when people know full well that their own functioning is “not right.” They know they cannot think right, cannot remember, cannot understand as they always could. (A slight aside here: Reminding them that they are doing badly, as in “Why can’t you remember?” will NOT result in better functioning, only in their increased frustration.). They know about their own poor functioning and often know of the diagnosis, which means for them that it will only get worse. And they, many times a day, are trying to do their best. That is a struggle that requires effort. This must be a terrible burden, a strain that is tiring.
So physical fatigue is considered to be a critical element of sundowner’s; and so is the awareness and frustration of the consciousness of one’s failings as the disease progresses, mixed with the terror of the continued irreversible downward continuation. I admit to an element of speculation in relation to the latter’s impact on sundowning. In any case, it is important to remember that there is, for a long time in the progression of most dementias, there is, for the patient, the added burden of awareness of their own failings.
Sundowning is another consequence of dementia, though generally intermittent. For them and those caring for them, sundowning may mean a bad end to an otherwise good day. Those of us connected to the person with dementia need to accept the symptom of a disease as something that is not really under their deliberate control. We all have our irritable moments, which are usually tolerated by others. Let’s view the reality of sundowning as more extreme, but something not under their control, something we must learn to tolerate.