August 14, 2023 Judith Allen Shone 🍦🍪

According to the Alzheimer Society of Canada, when a loved one with dementia, specifically Alzheimer’s disease, is experiencing anxiety, restlessness, or confusion, or appears to be agitated later in the day, or early evening, caregivers most likely are witnessing some aspect of Sundowning. (It is noted that sundowning can also happen to the elderly without the association of dementia. Many of the same strategies can be used to manage and lessen the effects.)

This behaviour is said to be dominant during the middle stages of Alzheimer’s, and most times it lessens as the disease progresses.

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NOTE: always remember to connect with your primary health care provider for appropriate advice and guidance, especially for unusual changes or changes that come on quickly.

Typical behaviours often associated with Sundowning.

The most common reported behaviours among those with sundowning, or sundowners’ syndrome, come from several of credible websites. (see bottom of page).

• Aggression, and perhaps making demands
• Anxiety and agitation
• Becoming violent, threatening or yelling
• Crying
• Depression
• Difficulty sleeping
• Disorientation, feeling lost
• Hallucinations and delusions
• Inability to carry out tasks that might be possible at other times
• Paranoia
• Rocking
• Wandering or pacing, or attempting to leave home

There are a number of sites listed at the bottom of the page that explain more about each of the behaviours and how you might react or be helpful as a caregiver. You will find the ones you prefer.

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My Love experienced Sundowning regularly.

I have mentioned on other pages that I cared for My Love for ten years as he journeyed through his memory loss phase of life. I share our experiences on this site.

As if on schedule, during the middle stages, which maybe lasted for three or four years, I noticed that My Love’s body seemed to know when it was time to shift into ‘sundowning mode.’ It was so close to the same time every single day that I could have set a clock by it. For us, it began around 4:30, regardless of where the sun actually was in the sky, regardless of whether I had drawn the drapes to let the time pass without reference to the sun. I always felt he went into ‘his bubble’ because his associated behaviours would seem to ‘switch on’ amid whatever he was doing at the time. Usually, his sundowning lasted for up to four hours each day. Although, I had heard it could go into the night. Then, almost like he was leaving his bubble, he’d ‘switch off’ and take on his former demeanor, separate from any behaviour’s during the sundowning period. Yes, it started and ended that quickly and dramatically.

I was totally unaware of sundowning until I observed it. I learned over time, as with the other aspects of this disease, to observe and report unusual changes to his doctor. But, I also grasped I had to go with the flow, adapt to his reality, and to let him know I was there for him. I know I was comfort to him. I learned not to argue with him, but to let My Love tell me what he was experiencing. I learned that even he did not know anything was different once the ‘switch’ had taken place. Although medications apparently were available, My Love was not prescribed any specifically for his sundowning behaviours, because, like with his original Alzheimer’s medication, there was a conflict with another medication he was taking. Although I was totally exhausted most of those years, that was the reality where we both lived.

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Suggested causes or factors that might contribute to Sundowning

At this time, it appears the causes of sundowning are not totally understood. Some suggestions taken from sites at the bottom of this page:

• Boredom – not enough activity, or too much activity
• Confusing sleep cycles from brain changes
• Depression, anxiety, mood disorders
• Dehydration
• Diet considerations, large meals, sugar, caffeine, alcohol
• Difficulty separating reality from dreams
• Fears of being alone, no one with them
• Hormone level variations
• Hunger and thirst, sleep patterns interrupted
• Infection, such as urinary tract infection (UTI)
• Low lighting and shadows, not enough exposure to sunlight during the day
• Overly tired, exhaustion, and restless
• Overstimulation and loud noises of a busy day
• Pain, known or unknown
• Picking up stress energy from those around them
• Sensory impairment, such as hearing or eyesight
• Side effects of, or reactions to, current or new prescribed drugs
• Unfamiliar surroundings (a change in recognition of where they are)

IMPORTANT NOTE: Always remember to connect with your primary health care provider for appropriate advice and guidance, especially for unusual changes or changes that come on quickly.

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Behaviours change during Sundowning

There were times when My Love would become upset with what he was experiencing, he would not understand what he was seeing or hearing. At times he was suspicious that I was perhaps not being honest with him when I think he felt I was not aware of whatever he was going through. At times, I had a difficult time recognizing when he was talking to his hallucinations and when he was talking to me. I noted he had a pattern of observing ‘whoever came to visit’ him. He seemed to know them. When they were gone, he’d ask me where they went, and of course, I always answered, (so there was no discussion) “I didn’t see them because I was in the kitchen.” He always accepted that. For a few minutes he remained unsettled and then their memory was gone. There were a couple times when he became quite aggressive, threatening and angry. I learned to have appropriate phone numbers handy and, for my safety, to leave the apartment to phone for help, if I truly needed it, because I had no control over what he might do.
I learned to protect myself…there are do overs!!
I tried to determine what triggered these actions I so I could be prepared, but never did discover a thing. I found it helpful, when My Love told me what he was experiencing, that I not judge and not argue, but accept, what he saw or what he heard.

Like so many before me, I discovered, tested strategies and often experimented as I learned caregiving for each phase of the journey as I went along.

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Coping strategies for Sundowning

We know that each loved one will respond differently to each situation. Sometimes trial and error is how we find what works best under each specific condition. To help make life simpler, a number of strategies have been suggested and those shown here are taken from various websites. A caregiver’s understanding of their loved one will help find their best solutions.

• Avoid surprises or disruptive activity
• Bring on calmness with gentle, healing touch
• Check with personal needs periodically: hunger, pain, sleepy, allergies, need for the toilet
• Cover mirrors or glass to avoid confusion from reflections
• Create distractions – talk about happy memories, engage in preferred activities, snacks, TV shows
• Dancing or just swaying to soft music, can be calming and the ‘hug’ can create security.
• Get fresh air with open doors or windows or walking outside in daytime
• Keep a daytime routine of ‘happy’ activities spaced throughout the day
• Keep meals small
• Limit daytime naps so they sleep better at night
• Limit intake of caffeine, cola, beer, alcohol
• Make evening a quiet time, with music or a phone call to a loved one, or reading stories
• Natural light in daytime; close curtains before evening to ease transition to nighttime
• Reduce noises, clutter or more than two people in the room at one time
• Simplify surroundings and eliminate known triggers
• Spend time with a pet
• Validate loved one’s thoughts, do not argue or raise stress levels. Redirect thoughts and actions.

Sites you might like to visit to read more about Sundowning

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Managing sundown behaviours requires empathy, creative experiments, flexible responses, and strong observation skills. Make efforts to determine what might trigger your loved one and what actions calm them. If there is no threat to their being, or health, provide comfort by being in their reality.

DO NOT WALK YOUR CAREGIVER PATH ALONE!

Your doctor and members of professional organizations are the best resources when you need assistance, suggestions, or information. Begin with your most local organization. A phone call or visit will get you moving in the right direction. Nothing beats talking to another human.

Sundowning resources:

CANADA
Alzheimer Society CANADA
Download Alzheimer Society CANADA booklet, Shifting Focus
YouTube Video by Alzheimer Society CANADA, Shifting Focus

See our pages:
Our extensive Education & Resources page with phone numbers and contacts
and our Alzheimer Society Connections page for Canadian Alzheimer Society branches.

USA
Alzheimer Association Illinois, USA
Cleveland Clinic USA
Mayo Clinic USA
National Institute of Aging US Health Dept
National Library of Medicine, USA

ENGLAND
Alzheimer’s Society ENGLAND

Each day do something to make others smile and your heart sing.

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Sundowning – Late-in-the-day confusion
August 2023 © Judith Allen Shone All Rights Reserved