Like Pulling Weeds

White perfectly coifed hair, twinkling eyes and a quick wit, that’s how I’ll always think of Barbara. A business owner, mother to two respectable sons, doting wife and, I mean this with all love and respect, kind of a nag.

Barbara loves to fix her hair each morning, chow down on a hearty breakfast and engage in activities with her neighbors. This is when she is most herself. As the afternoons wear on, Barbara becomes increasingly restless and frustrated. She would shout out for her husband constantly and even fell a couple of times trying to get out of her wheelchair to go find him. Her care partners supported her by providing a calm environment, making sure she was sleeping well at night, offering snacks and drinks, going for a walk, assessing for pain, using the restroom... the list goes on and on. Nothing seemed to work; nothing we tried or brainstormed seemed to ease her mind. Unable to find the right approach we turned to her sons for advice. And you guys it was so stinking simple!

Barbara’s sons shared that as her dementia had progressed, their father had come up with a way to keep his wife “out of trouble” during the day.

He would roll her wheelchair to the edge of the lawn and proceed to pick weeds while she watched with utter boredom. While this did “keep her out of trouble”, Barbara simply despised watching her husband pull weeds all afternoon. And so, we learned an important detail and no detail is ever too small. When Barbara would call for her husband, all we had to say was “he’s out picking weeds” and she would happily agree to do something.. anything.. to not have to sit and watch her husband pull weeds.

Yep you’ve probably heard of Sundowning, but what is it exactly? Here on some basics from Wikipedia:

Sundowning, or sundown syndrome, is a neurological phenomenon associated with increased confusion and restlessness in people with delirium or some form of dementia. It is most commonly associated with Alzheimer's disease but also found in those with other forms of dementia. The term "sundowning" was coined by nurse Lois K. Evans in 1987 due to the timing of the person's increased confusion beginning in the late afternoon and early evening. For people with sundown syndrome, a multitude of behavioral problems begin to occur and are associated with long term adverse outcomes. Sundowning seems to occur more frequently during the middle stages of Alzheimer's disease and mixed dementia and seems to subside with the progression of the person's dementia. People are generally able to understand that this behavioral pattern is abnormal. Research shows that 20–45% of people with Alzheimer's will experience some variation of sundowning confusion.

Symptoms are not limited to but may include:

Increased general confusion as natural light begins to fade and increased shadows appear.

Agitation, and mood swings. Individuals may become fairly frustrated with their own confusion as well as aggravated by noise. Individuals found that yelling and becoming increasingly upset with their caregiver is not uncommon.

Mental and physical fatigue increase with the setting of the sun. This fatigue can play a role in the individual's irritability.

An individual may experience an increase in their restlessness while trying to sleep. Restlessness can often lead to pacing and or wandering which can be potentially harmful for an individual in a confused state.

Hallucinations (visual and/or auditory) and paranoia can cause increased anxiety and resistance to care.

How you can help?

Ask questions, lots and lots of them of the people who know the person living with Dementia best. Who knows, maybe you’ll stumble upon a unique detail like we did with Dorothy.

Non-pharmacological treatments:

If possible, a consistent sleeping schedule and daily routine that a sufferer is comfortable with can reduce confusion and agitation.

If the person's condition permits, having increased daily activity incorporated into their schedule can help promote an earlier bed time and need for sleep.

Check for over-napping. People may wish to take naps during the day, but unintentionally getting too much sleep will affect nighttime sleep. Physical activity is a treatment for Alzheimer's, and a way to encourage night sleep.

Caffeine is a (fast-working) brain stimulant, but should be limited at night if a night's sleep is needed.

Caregivers could try letting people choose their own sleeping arrangements each night, wherever they feel most comfortable sleeping, as well as allow for a dim light to occupy room to alleviate confusion associated with an unfamiliar place.

Light therapy can help regulate circadian rhythms. Older adults can struggle to receive consistent sunlight due to bedrest and institutional limitations. Mood and spatial positioning improvements have been noted in peoples experiencing dementia with exposure to indoor light, but evidence is currently inconclusive.

Reducing the amount of overwhelming noise in the late afternoon or early evening can help the transition to sleep.

Music therapy, aromatherapy, acupressure, psychosocial support, caregiver education, multi-sensory stimulation, and simulated presence therapy are possible treatment pathways, but evidence is currently lacking in clinical practice.

Exercising at consistent times daily has been proposed to improve circadian rhythm and reduce the symptoms of sundown syndrome in people with Alzheimer's and dementia. It has also been observed that people with Alzheimer's walking at morning or afternoon hours had improvements in sundowning symptoms.