How disrupted brain clocks create twilight confusion

The term “sundowning syndrome” describes a cluster of symptoms and behavioral abnormalities that manifest in a person’s altered state of mind, conduct, and mood when the sun sets later in the day. It has been estimated that twenty percent or more of Alzheimer’s patients experience sundowning at some point. To keep their care recipient comfortable and peaceful, caregivers must be aware of sundowning and have the necessary tools to manage it.

It’s more of a symptom that people with dementia often experience than a disease itself. Estimates are that sundowning affects more than 60% of dementia patients, according to some research, while the actual prevalence varies greatly, ranging from 1.6% to 66% of dementia patients.

We may also be surprised by the current and future prevalence of the disorder. Someone develops dementia every three seconds, as noted by statistical tables related to the astonishing rate of population ageing, and by 2050, there will be 152 million individuals living with the disorder.

Sundowning is a significant worry for families coping with dementia, and the wide variety of results illustrates that researchers have different ways of defining it. In other words, we have no accurate means of measuring worldwide sundowning, or the many manifestations and behavioral symptoms that may be exhibited by individuals with it.

Changes in behavior that are often seen in persons who are experiencing sundowning include:

• Confusion
• Paranoia and suspicion
• Agitation
• Frustration and anger
• Hallucinations and delusions (auditory or visual)
• Pacing or wandering
• Restlessness
• Anxiety or fear

A Neighbor of Mine

An elderly woman living with her husband in an apartment complex near me started experiencing sundowning. Although the man, who was in his mid-90s, remained fairly cognitively intact, the woman began to leave the building at night, as she said, "I'm going to visit my parents." She would often wander out without a coat, despite the cold night temperatures.

The woman was in her mid-80s and, after walking through the complex at night, would return to the building but be unable to enter because she didn't have a key. The husband had refused to give her a key in an attempt to keep her in the apartment, to no avail.

A woman resident of the building, noting the elderly woman's late-night exits, took it upon herself to shadow her to ensure her safety. Once she had returned to the building, the neighbor opened the lobby door for her, and she went back to her apartment. This went on for at least two months until a minister they knew decided to help find a safer place for them to live. They were then transported to an assisted living facility, where they now reside.

One theory proposed to explain sundowning behavior in Alzheimer's disease is the deterioration of neurons in a specific brain area that contains the body’s principal circadian (sleep-wake) pacemaker.

Research has shown that sundowning exhibits different characteristics in different individuals. Among sundowning patients, agitation (56.4%), irritability (53.8%), and anxiety (46.2%) were the most common symptoms. The other manifestations can include confusion, restlessness, pacing, failure to follow instructions, suspiciousness, and hallucinations. The affected individuals either ask for more attention or withdraw and feel scared. These symptoms can also occur in the morning instead of the evening in some cases.

Who Is Affected?

Even though sundowning is most often associated with Alzheimer’s disease and other dementias, it can occur in older adults who do not have dementia. People with sundowning disorder tend to be older, to develop dementia later in life, and to have more severe dementia and functional impairment.

The situation is very challenging for caregivers and families to handle. In fact, sundowning is the main reason why patients are placed in nursing facilities because of how difficult it can be to manage at home without the appropriate help and strategies.

Nursing homes have tried to meet this challenge by addressing sundowning and wandering in residents and usually require them to wear a special device around their wrist. The device activates an alarm system on the doors leading outside the building. For some, this may seem like an excessive means of control, but it is intended to prevent someone from wandering off, potentially with serious consequences.

I worked at a psychiatric hospital that did not have this type of system installed. One of the patients wandered off through an unlocked door and wasn't found until three days later. Unfortunately, this individual had become entangled in barbed wire near an adjacent farm, and the overnight freezing temperatures led to their death.

The Biology Behind Sundowning

Families who want to understand why sundowning occurs and which strategies might be effective should know how sundowning is related to biology. The human body has an internal clock system, which is approximately 24 hours long and controls sleep-wake cycles, hormone secretion, body temperature, and many other physiological functions. The brain contains molecular clockwork that governs these 24-hour rhythms (some sleep medicine specialists believe it’s a 25-hour rhythm) and is reset daily by the light-dark cycle.

But the biological system that usually controls the body's functions in dementia becomes impaired. These processes involve genetic factors linked to specific genes, as well as neurodegenerative processes in brain regions that regulate the circadian rhythm. Research has now identified the brain pathways that connect tau protein pathology to sundowning-related disturbances, demonstrating how dementia affects brainstem neurons.

The Connection to Cognition

Sundowning is complexly related to cognitive function, and this relationship is multifaceted. The disorder is characterized by neurodegeneration, sleep disorders, disrupted circadian rhythms, and mood disorders. When the brain areas that regulate our internal clock degenerate, the body loses its ability to distinguish between night and day. The disruption affects more than just sleep patterns. The circadian system controls alertness, attention, memory consolidation, and emotional regulation, which are cognitive functions already impaired in dementia.

This desynchronization of the biological clock exacerbates existing cognitive problems, generating more confusion and stress. Typically, the brain starts preparing for sleep during the evening, which is probably why sundowning is at its worst during this time.

Healthy individuals experience a smooth and coordinated transition at this time. The impaired circadian system in people with dementia sends conflicting signals, which lead to the agitation and confusion seen in sundowning.

Strategies for Management

Although sundowning is challenging to handle, there are evidence-based strategies that can reduce its occurrence and intensity. The approach should be to work with the body’s natural rhythms and to create a supportive environment.

The circadian system responds strongly to light, so providing appropriate lighting throughout the day can be beneficial. Bright light should be given during morning and daytime hours, and the lighting should be gradually dimmed as evening comes. Fluorescent lights at night should be avoided because they can be very disorienting.

The body’s natural rhythms can also be reinforced by establishing predictable daily schedules. Meals, activities, and bedtime should occur at the same time every day. Simple evening routines that are calm can help the brain and the individual recognize that it's time to relax.

Daytime physical activities, especially in the morning or early afternoon, can help maintain a healthy sleep-wake cycle. Stimulating activities should be avoided in the hours leading up to bedtime.

Environmental Modifications

In the evening, create a calm, familiar environment. The volume and movement in the environment should be decreased, and the person may respond to soft music that they recognize. The temperature in the space should be suitable, neither too hot nor too cold, as temperature regulation can be affected in individuals with dementia.

The process of managing triggers requires identifying elements that tend to cause sundowning episodes. Fatigue, along with hunger, thirst, pain, and overstimulation, represents common factors that trigger sundowning episodes. Some episodes can be prevented through early management of fundamental needs.

Healthcare providers recommend that sundowning evaluations should be conducted regularly, and medical staff should employ a comprehensive approach to identify its risk factors. Caregivers need to collaborate with these providers to identify and address the causes of sundowning and evaluate treatment options, which may include personalized medications or behavioral interventions.

The Importance of Caregiver Support

Seeking assistance for sundowning management does not indicate failure, as it can be an overwhelming task for caregivers. The challenge can be best handled by receiving support through local groups, along with respite care and professional guidance that helps families facing this issue.

Keep in mind that sundowning is a brain-related symptom, rather than a reflection of poor care quality or personal character flaws. Everyone involved in the care of someone who is sundowning needs to understand that they also need care. Burnout can be a serious consequence of attempting to handle this without assistance. That's where respite care for the caregivers comes into play.

I knew one woman who had a full-time day job while her mother, who suffered from increasing dementia, was at home alone. Other family members did not pitch in to help her, and she soon found herself having anger issues she had never experienced before. Burnout was evident.

I remember her telling me that she stopped herself from hitting her mother because of what the mother was doing in the home (a very distressing personal grooming issue). Calls to family members and support groups in the area ultimately resulted in the elderly woman attending a day program and being returned in the early evening. A family therapist was also assigned to the woman to help her cope with her mother.

Families can improve their approach to sundowning by understanding its biological origins in circadian rhythm disruption. Early identification of these sundowning patterns, combined with supportive interventions, leads to a better quality of life for individuals with dementia, as well as their family caregivers.