Lately, you’ve tried to decipher why the terminal patient in your life becomes more agitated and anxious towards the end of the day. They seem to repeat this pattern regularly.
A fellow caregiver suggested it could be sundowners syndrome. What is this syndrome, and how does it affect those who have it?
Sundowners syndrome refers to behavioral changes that begin late in the afternoon and early evening.
It is prevalent in dementia and Alzheimer’s disease patients, although older adults without these cognitive challenges can also experience sundowning.
Symptoms can include wandering, pacing, agitation, anxiety, and confusion. The patient may also have trouble sleeping.
This guide to sundowners syndrome in the terminally ill will examine the symptoms, how long it lasts, and how family members can help manage it.
What Is Sundowners In Terminal Patients?
Sundowners syndrome is the worsening symptoms of dementia or Alzheimer’s patients as the day goes on, hence the name. The symptoms can continue into the night.
That said, sundowning can occur in older people who do not have cognitive disorders.
Medical experts aren’t really sure about the underlying causes of sundowning.
It’s not a disease or a medical condition. Instead, “sundowning” is a broad term for a unique collection of behaviors that some researchers think may be part of dementia-related circadian rhythm changes happening in the brain.
How prevalent is it?
Well, a 2016 Frontiers in Medicine study reported that only about 20 percent of Alzheimer’s patients have sundowners syndrome. However, a Phase 3 clinical trial on circadian rhythm on the Alzheimers.gov website refutes that, noting that, “Circadian rhythm disorders occur in most people with dementia.”
My dad started sundowning after a hospital stay for a mild heart attack about a month before he passed away.
While he was never formerly diagnosed, he showed signs of a mild cognitive impairment in the last few months of his life that was likely dementia. So, I tend to agree with the statement from the circadian rhythm study.
What Are The Symptoms Of Sundowners Syndrome?
Dementia or Alzheimer’s patients with sundowners syndrome may experience any of these common symptoms.
Hallucinations Or Delusions
The low light at the end of the day can disturb the person’s normal circadian rhythm and throw off their internal clock. This can cause a sundowners patient to see manifestations of things that aren’t really there.
However, these hallucinations or delusions seem ultra-real to the patient and can aggravate existing symptoms or cause new ones.
Paranoia Or Confusion
The confusion that regularly accompanies dementia or Alzheimer’s can worsen with sundowners syndrome. The patient can even become paranoid, which could be fueled in part by the above-mentioned hallucinations and delusions.
For example, when he was experiencing sundowning, my dad once called me during the evening hours after I had just left him, agitated and insisting that Russia was firing missiles at us and we were at war with them.
It turned out that he was watching a program that was talking about World War II and he had misinterpreted the content.
Nevertheless, he could not be calmed or reassured by me telling him it wasn’t happening. To him what he was watching on TV was very real and scary.
Irritability Or Agitation
A dementia patient can experience rapid mood swings on an average day, but they may regularly be in a bad mood as the day progresses.
It might seem like every little thing agitates them, making caring for the patient difficult.
One of the symptoms of sundowning is that it can make it hard for the person to relax. It can also mess with sleep-wake cycles and ultimately can cause sleep disturbances that prevent the person from getting a good night’s sleep.
Anxiety Or Fear
Dementia or Alzheimer’s patients might begin experiencing pronounced fear and anxiety as the day goes on and night approaches. They may struggle to calm down and get any sleep.
Sadness Or Crying
The sadness that can occur through sundowners syndrome especially affects older people with depression. In some instances, it can get so severe that the patient begins crying or shouting.
A trademark symptom of sundowners syndrome is shadowing, which is when the dementia or Alzheimer’s patient follows their caretaker no matter where they go.
You can become overwhelmed by this behavior, as you feel like you can’t get a minute to yourself.
Pacing Or Wandering
Sundowners syndrome can also increase a dementia patient’s proclivity to pace or wander.
Pacing can impede relaxation and lead to physical exhaustion. Wandering is even more dangerous, as older adults can leave the house and end up lost.
An Alzheimer’s patient may begin rocking back and forth in one spot when experiencing sundowners syndrome. This usually occurs in a chair but could happen on a couch or bed.
One of the scariest symptoms of sundowners syndrome is the increased likelihood of violence, especially in a dementia or Alzheimer’s patient.
That doesn’t mean every patient with this syndrome will physically attack, but it’s a possibility you must be aware of.
How Do You Deal With A Sundowners Patient?
Sundowners syndrome can make the everyday care of a terminal patient of someone with dementia or Alzheimer’s patients even more complex. Family caregivers do have options for dealing with the physical, mental, and emotional changes, however. Here are some tips.
Plan Activities, But Leave Room For Breaks
In general, dementia or Alzheimer’s patients can enjoy a varied schedule (with supervision) to provide physical and mental stimulation until closer to the end of their life. But – you must be careful about how you plan activities and how many you add to the itinerary.
Plan the bulk of the activities in the morning. Keep the senior active throughout the day but not so busy that they’re exhausted, as that can take a toll on them later.
You also want to avoid overstimulating them, which you’ll recall can make sundowners syndrome more severe.
Try to be back home in time for late afternoon, as a familiar place could reduce sundowners symptom severity.
Play Soothing Sounds And Music
As the day wanes, play soft music and sounds to stave off anxiety, fear, and depression in dementia patients.
For example, you could play a CD of soft nature sounds or the gentle rolling of the ocean. Classical or light jazz music is also fine.
Avoid any heavy, loud, and overly stimulating music and sounds.
Speak To Their Doctor About Their Medications
The next time your loved one has an appointment, review their medications with their healthcare provider.
They might be unable to stop certain medications, but perhaps they could reduce their dosage or switch to a different drug with a lessened medication side effect.
If not, you might ask the doctor about changing the time the person takes their medication to lower the likelihood of the meds contributing to their sundowning.
Avoid Caffeine And Alcohol
Caffeine and alcohol will lead to more irritability, rocking, and restlessness that keep people awake. If you can encourage the person to discontinue these substances, that’s best.
At the very least, they should stop consuming anything with caffeine or alcohol in the afternoon.
Make The Unfamiliar Feel More Like Home
Provide a comfortable environment for the dementia patient, especially if they’ve recently moved to an assisted living community, a nursing home, or hospice care.
Use familiar decorations, hang photos of loved ones on the wall, and be sure to visit regularly.
Schedule Naps Into The Day
People with a terminal illness often sleep more as their disease progresses.
Napping throughout the day can help them get the rest they need, if they aren’t sleeping so well at night.
Schedule a few naps throughout the day, but make sure the last nap isn’t too close to the senior’s bedtime, or they won’t sleep.
Ask About Using Melatonin Supplements
Another solution is discussing starting the person on melatonin supplements. Their doctor will approve this supplement and recommend how much the patient should take for a better night’s rest.
Use A Night Light
A night light isn’t only for children. Plugging in this complementary light will reduce shadows and darkness.
It can help the person struggle less to tell what’s real from what isn’t, which could calm their mood.
Keep Physically Active
Physical exercise is an important part of a senior’s routine, for as long as they are able to take part.
Plan at least 30 minutes of physical activity each day, choosing exercises that aren’t too strenuous but will still get the senior’s heart rate up.
Also, schedule exercise earlier in the day versus later.
Avoid Heavy Meals
If they are able, a terminal patient should eat (and drink) regularly to avoid becoming too hungry and dehydrated. However, heavier meals later in the day could worsen hallucinations, pain, and restlessness.
You can’t eliminate stress from the equation entirely, but you can strive to lessen it.
Maintain a stable routine, keep the surprises to a minimum, and create a soothing environment for the person.
How Long Does The Sundowning Phase Last?
People with sundowning syndrome will have the onset of worsening symptoms at about the same time of day, typically late in the afternoon.
The symptoms can persist into the evening but will usually only last for several hours.
This should mean that by bedtime (or thereabouts), the senior will behave more like themselves again.
They’ll certainly feel better by the morning, but their behavior changes or group of symptoms should begin to shift and worsen again as the day progresses.
What Makes Sundowning Worse?
Many factors can worsen sundowning, including some you have control over. Here’s an overview.
Low Lighting And More Shadows
Seniors with a serious illness or with cognitive concerns can have a difficult time deciphering between dreams and reality.
Further complicating matters and increasing the prevalence of sundowning syndrome is the reduced lighting at the end of the day, along with an increase in shadows.
Being In Pain
Medical conditions or injuries that cause people pain throughout the day can increase their rate of sundowning symptoms.
Patients left to their own devices for too long can become bored. That can also happen when someone is always in the same environment without any unique stimulation.
Boredom could increase the rate of sundowning symptoms.
When my mom had her terminal brain tumor, it was winter. She was constantly freezing and confined to a wheelchair without the use of her legs, which made it difficult to get dressed or to go out and do anything different.
After awhile, the TV shows she used to love no longer made sense to her, so she stopped watching them. And stopped reading for the same reason.
The result was that she was bored beyond belief. And it was right around this time that her sundowning episodes began.
Looking back, it makes complete sense that her boredom contributed to her symptoms.
However, there’s a fine line between boredom and overstimulation. Too much excitement can also cause late-day confusion to become more severe.
Changes in daily routines and spending the day in a new place might aggravate the patient more.
I’d recommend keeping a logbook of what you did during the day and what sundowning symptoms showed up that night.
That way you can stop an activity that seems to contribute to your loved one’s symptoms.
Tiredness can increase sundowners symptoms, especially in someone with dementia or Alzheimer’s. This goes hand-in-hand with overstimulation.
Having An Infection Or Illness
Just as physical pain can worsen negative behaviors, infections and illnesses can be one of the risk factors that make an Alzheimer’s patient likelier to experience agitation, wandering, rocking, shadowing, and other sundowning symptoms.
When my dad went through his last month of life, he did have a urinary tract infection, which they discovered when he went into the hospital for his heart attack.
Prior to this he was fine, so I think the infection was one of the triggers of sundowning for him.
Medication Side Effects
Check the medications the patient is on. Some meds can increase a person’s likelihood of anxiety and depression, cause them to see hallucinations, and experience other mood changes.
Thirst And/Or Hunger
Dehydration can make late-day confusion worse, as can hunger. A senior should eat a nutritious, filling meal and drink plenty of water as the day draws to a close.