This is a first person account of sundowning by Barry Pankhurst (copied with his permission as below)
Some time ago on another website called ‘Talking Point’ I was asked the following question and I quote:
(Barry could you explain how you feel whilst Sundowning, does anything trigger it or does it just happen like clockwork?)
Well as there were so many ‘New Members’ I thought it might be a good idea to post the thread again for easier reading rather than searching as sometimes new comers want answers immediately…
The easy answer would have been to just to say yes (It happens like clockwork) but I think the subject is far more complex than that as it seems that Sundowning as it’s called can affect people with our illness at different times of the day, “in fact” a similar thing can also happen at the beginning of the day when the sun is rising, although the latter part of the day when the sun is setting seems to be the most significant time…
One thing I should explain is that here in Indonesia and some other parts of ‘Asia Sun Rise and Sunset’ occurs at about the same time everyday of the year, by 6am its broad daylight and by 6pm it’s getting dark unlike European countries when during the summer you have extended hours of sunlight from 4am-9pm which in itself could have some significance as to when a person starts to feel the effects of Sundowning?
But how does it make me feel: I think the best way I could describe it is to say that it causes a similar feeling that I can still remember after having had a nervous breakdown some years ago that at the time resulted in extremely deep depression.
For me it normally starts at around 3-4pm when I start to feel very lethargic and just seem to be wandering around the house utterly lost in my own world mumbling to myself or sitting in a chair drifting into daydreams (in fact my dear wife Sumi says she can now tell what time of day it is without looking at the clock) I fell as though the end of day is trying to drain every last bit of energy out of my body, all my limbs become extremely weak and I find it very difficult even to go for our walk but still go in a effort to ward off the Sundowning effect, I can become incredibly short tempered and loose all sense of rationality and sometimes become verbally aggressive and argumentative, you feel as though the whole world is against you and that whatever you say or do is wrong so I don’t like to be posed any questions at this time of day not even (what do you want for dinner) and I certainly don’t like to have any visitors at this time not unless they want their heads bitten off as my mind is at a total loss of any comprehension, all I want is to have my dear wife by my side but she now realizes that it’s best to talk to me very soothingly and I’m sure that she now just agrees with everything I say in an effort to keep me calm and also makes sure the house is kept peaceful without any excessive noise to further confuse my mind (Bless her as she has so much patients with me) as I start to feel as though I have the whole weight of the world’s problems upon my shoulders and everything becomes a effort so much so that my wife now has to help me bathe and get dressed as I’m so agitated and shaky…
So there is nothing that actually triggers the Sundowning apart from the setting of the sun as it descends towards the horizon which makes it feel as though its automatically starting by itself, but if it’s not handled with sensitivity then there could be untoward repercussions, also I should add that not everyday is the same as some can be worse than others and sometimes I can go for a few days without feeling any effects of Sundowning and the other strange thing is that even the weather conditions at the end of day can have some influence if its overcast I feel much better and responsive but if it’s a strong bright crimson sunset that we get out here then the draining affect starts much quicker, in fact, I get much the same affect when I go into a shop that has to brighter a neon, or flashing lighting…
Read of the reality when I’m Sundowning
This is written on actuality not supposition from when my dear wife Sumi and I went for our end of day walk it’s not just a one off situation or sensation for me it’s more of an occurrence day after day that totally shatters me!
It was just 4-30pm as the sun starts descending over the horizon when lethargy takes a grasp of me and the Sundowning affect ‘tolls the knell of my end of day’ so I’m writing this down trying to express the depths of my ‘true inner feelings’ at that exact moment in time…
My whole body aches as the muscles try to maintain some equilibrium, and as we go for our walk every faltering step I take being like that of wearing shoes made from concrete that’s slowly setting and intensifying in weight, which makes me weigh heavily on my walking stick and Sumi’s arm otherwise I feel I could just pass out from utter exhaustion as my mind is consumed in a dense obscure cloud of disorientation and bewilderment, my limbs are trembling so much I don’t know what to do with them to ease the tremor… my vision has become blurred as my eyes feel heavy wanting to sleep and escape from the sun’s setting draining sensation, so Sumi tries talking to me to take my mind of the horizon as my eyes have become mesmerized following the sun’s descent and harsh rays… but I can’t comprehend what she’s saying, I try to reply but any form of words and speech are held tight within me so all I do is mumble something incoherent which then makes me frustrated and I become really irritated and tetchy with her, the slightest little noise is more like thunderbolts slamming into my ears and making me very anxious and extremely jumpy…
The further the sun sinks away… the further I go into despair of doom and gloom… and sometimes it gets me to the point of saying to Sumi: (I’ve had enough of this, maybe it would be better if it all ended now, and I did not wake up again) as I can almost sense death waiting round the corner taunting me when in this daily living hell of Sundowning, I can see the tears glistening and running down her cheeks as she holds on more tightly to me saying ‘please don’t speak like that’ but I seem to be oblivious to her own anguish as my whole being is so distraught by the time of day that I just want it to come to an end…
As I said those where my exact feelings made from notes one evening, but as I type them out the next morning I had little recollection of that moment in time… it’s as if it never existed… as this morning I feel a completely different person still full of determination and the spirit of fighting this terrible illness, but when Sundowning strikes it takes us into a completely different world of anxiety within dementia…
I will be very interested to know what others people’s observations are with Sundowning as it’s another part of the illness that doesn’t affect us all in the same way.
Please feel free to copy this to your friends or on your own Blog sites as it might help other people to better understand how Sundowning can affect a person who has any type of dementia…
Living in Indonesia with mixed dementia, (Alzheimer’s LBD and Parkinson’s disease)
Some Sundowning Tips to ease the anxiety
“Sundowning” is a state of increased agitation, activity and negative behaviors, which can happen late in the day through the evening hours. It used to be thought that Sundowning was caused by the lowering light and shorter days. However, research now indicates that being overly tired may have more to do with Sundowning. Here are some suggestions on how to minimize the negative behaviors associated with Sundowning:
Make sure that your Loved One is well rested: I know that this is easier said than done. It does help though if you can get your Loved One to take a nap just before their normal period of Sundowning. If they cannot or will not nap, an hour quiet time (reduced stimulation and activity) will work. Turn off the TV, turn on some soft music and then sit and do a quiet activity such as painting or sketching. Sit and talk quietly with you loved one for an hour as it can help to make them relaxed.
Limit outings and activities to the morning hours: Generally the individual with Alzheimer’s disease is better able to tolerate outings, activities and increased stimulus during the earlier part of the day. Plan your trips to the grocery store, involvement with kids, visits to day care and so forth during the earlier part of the day. This should be followed with a time of decreased stimulus and quiet time to allow your Loved One to wind down and relax.
Decrease the length and amount of stimulus: Even during the earlier part of the day the individual with Alzheimer’s disease can only tolerate so much stimulation and commotion. Take steps to eliminate over-stimulation such as television, children, and any noise making item, quick movements and many things going on at one time. Sometimes excessive stimulation cannot be avoided. When that happens, allow your Loved One to have a quiet area to retreat to.
Identify and minimize physical discomfort: Other types of physical discomfort can also play a part in Sundowning. Hunger; being wet or soiled, feeling cold/hot and other sources of discomfort can increase agitation, especially in the late afternoon and early evening. Light snacking during the day can be helpful. Apples and other fruits can help replace lost energy – even if your Loved One is pacing back and forth, that does not mean they have an endless supply of energy. Make sure that your Loved One’s personal needs are attended to and that the climate is at a comfortable level.
Identify and treat medical ailments: Many ailments can contribute to Sundowning and agitation. Arthritis can be one of the most common causes. An over-the-counter painkiller as recommended by your Loved One’s physician before the time of Sundowning might be of great benefit. Urinary Tract Infections, flu / colds, asthma, allergies and other conditions are all medical ailments that can contribute to Sundowning. It is always a good idea that when your Loved One first begins to exhibit Sundowning or when Sundowning becomes common to take them to the doctor to make sure that there is nothing ailing them.
Be observant to possible causes: Many times there are triggers to agitation leading to Sundowning. I now find that the noise from a hand phone tone can affect me more when I’m Sundowning so It’s best to set the phone to just a vibrate mode. Provide your children with a separate area to play as quietly as possible. Mirrors can also become a trigger as well due to light reflections. Watching to see what is going on, what events are happening and who is present prior to Sundowning can help reveal some causes (and solutions).
Sometimes no matter what we do Sundowning will happen. If we cannot prevent it we can help lessen it or at least make it less unpleasant for our Loved Ones and those around them.
Provide a private “time out” space for your Loved One:
Keep the house as quiet as possible to avoid aggressive Sundowning episodes, turn off unneeded lights, turn off the TV/radios and either go to a quiet corner or go and sit outside for a moment but always be close at hand.
Check with the doctor: If Sundowning is particularly troublesome; you may need some extra help with prescription medication. Talk with the doctor to let him know of the behaviors, time of day and how you’re Loved One is behaving before Sundowning. He may be able to help you by prescribing a medication to help ease the symptoms.
Medication is a last resort and may take several attempts with different drugs and doses to find the right one that will work for your Loved One.
If medication does not help, do not become discouraged, relay the information to the doctor and he may either adjust the dosing or change the medication.
Keep things simple: Keep the surroundings as simple as possible. Be sure your Loved One’s walking paths are clear from clutter and obstacles. Low furniture such as coffee tables and footstools can make it difficult for your Loved One and become a source of frustration. Keep knickknacks to a minimum and the tops of tables, television shelves and other surfaces as clear as possible.
Mirrors and pictures can often become unfriendly visitors that the individual with Alzheimer’s disease cannot understand. Complicated, noisy appliances are also frustrating to them.
Avoid changing things once you have things simplified since changes of any kind can be extremely frustrating for someone who has dementia.