Navigating Sundowning: A Guide for Dementia Carers

Caring for a loved one living with dementia is a journey filled with unique challenges, moments of profound connection, and often, periods of intense difficulty. Among these challenges, a phenomenon known as “sundowning” can be particularly distressing and confusing for family carers. It’s that time of day when the calm may suddenly give way to increased agitation, confusion, or anxiety as the sun begins to set.

If you’ve witnessed your loved one becoming restless, more disoriented, or exhibiting challenging behaviours in the late afternoon or evening, you’re not alone. This experience, often referred to as sundowning or sundown syndrome, is a common reality for many families caring for someone with dementia in the UK. Understanding what sundowning is, why it might occur, and crucially, what practical strategies you can employ, can make a significant difference to both your loved one’s well-being and your own.

This guide aims to shed light on sundowning, offering empathetic support and actionable advice to help you navigate these difficult periods. We’ll explore the signs, potential triggers, and effective approaches to create a more peaceful evening environment, ultimately supporting you in your invaluable caregiving role.

What Exactly is Sundowning Syndrome?

Sundowning is not a disease itself, but rather a cluster of increased confusion and agitated behaviours that occur in the late afternoon or evening, often continuing into the night. For individuals living with dementia, as daylight fades, you might observe a marked change in their demeanour and actions. It’s a syndrome that can profoundly impact the daily lives of both the person with dementia and their carers.

The symptoms can vary widely in intensity and manifestation. Your loved one might become more confused, easily agitated, or display heightened anxiety. You might notice them pacing, wandering aimlessly, or attempting to leave the house. Some may experience vivid hallucinations or delusions, leading to fear and suspicion, while others might become more stubborn, resistant to care, or experience increased restlessness and difficulty sleeping. These changes are often most pronounced as the natural light diminishes, making the transition from day to night a challenging period.

Why Does Sundowning Happen? Understanding the Triggers

While the exact cause of sundowning isn’t fully understood, it’s believed to be a complex interplay of various factors related to the progression of dementia. It’s important to remember that these behaviours are not deliberate but are symptoms of the underlying disease. Pinpointing potential triggers can be a crucial first step in managing sundowning behaviours effectively.

Biological Factors

One leading theory points to a disruption of the body’s internal circadian rhythm, the natural sleep-wake cycle that regulates our biological processes over a 24-hour period. Dementia can damage the part of the brain responsible for maintaining this rhythm, leading to confusion between day and night. As the day progresses, individuals with dementia may also experience increased fatigue, both physical and mental, which can lower their tolerance for stress and make them more susceptible to confusion and agitation. Changes in hormone levels and brain chemistry are also thought to play a role in this dysregulation.

Environmental and Psychological Triggers

Beyond biological changes, the environment and psychological state of the person with dementia can significantly contribute to sundowning. As natural light fades, dimming rooms can create shadows that are easily misinterpreted or perceived as threatening, increasing fear and disorientation. An environment that is either too stimulating (loud noises, too many visitors) or too understimulating (boredom, lack of meaningful activity) during the day can also contribute to evening distress.

Often, sundowning behaviours can be a way for the person to communicate unmet needs. They might be experiencing pain that they cannot articulate, feeling hungry or thirsty, needing the toilet, or simply feeling cold or uncomfortable. The end of the day can also bring about feelings of loss, loneliness, or anxiety as the familiar routines of the day conclude and darkness sets in, reminding them of their confusion and dependence.

Practical Strategies for Managing Sundowning

While sundowning can feel overwhelming, there are many practical strategies you can implement to help manage and potentially alleviate its symptoms. Consistency, empathy, and a keen eye for triggers are your most valuable tools.

Establishing a Routine

Creating a predictable daily routine is one of the most effective ways to provide a sense of security and reduce anxiety for someone with dementia. A consistent schedule helps to reinforce the body’s natural clock and can minimise confusion.

Consistent Daily Schedule:

• Wake-up and Bedtime: Try to maintain regular wake-up and bedtime hours, even on weekends. This helps regulate their sleep-wake cycle.
• Meals and Activities: Schedule meals, activities, and personal care tasks around the same times each day. Predictability can be incredibly calming.
• Daytime Engagement: Ensure your loved one has enough meaningful activity and stimulation during the day. This could include light exercise, hobbies, social interaction, or simple household tasks. Keeping them engaged can help reduce boredom and promote better sleep at night. Avoid long naps in the late afternoon, as these can interfere with nighttime sleep.

Optimising the Environment

The physical environment plays a huge role in how someone with dementia perceives their surroundings, especially as light changes. Thoughtful adjustments can make a significant difference.

Lighting:

• Brighten Rooms: As afternoon approaches, gradually increase the lighting in your home. Use bright, non-glare artificial lights to compensate for fading natural light. This can help reduce shadows and misinterpretations.
• Night Lights: Install night lights in hallways, bedrooms, and bathrooms to prevent disorientation if they wake up during the night.
• Avoid Abrupt Darkness: Don’t plunge rooms into sudden darkness. Gradually reduce light levels closer to bedtime.

Noise and Comfort:

• Reduce Noise: In the evenings, try to create a calm, quiet atmosphere. Turn off loud televisions, radios, or other sources of noise that could be overstimulating.
• Comfort: Ensure the room temperature is comfortable, and your loved one is dressed appropriately. Check for any physical discomfort that might be contributing to their distress.

Communication and Reassurance

Your approach and communication style are paramount when your loved one is experiencing sundowning. Your calm presence can be a powerful antidote to their agitation.

Empathetic Approach:

• Validate Feelings: Acknowledge their distress without dismissing it. Phrases like, “I can see you’re feeling worried right now,” can be helpful.
• Offer Comfort: Provide reassurance through a gentle touch, a soothing voice, or a comforting presence. Avoid arguing or reasoning, as this can escalate agitation.
• Redirection: If they are fixed on a distressing thought or action, gently try to redirect their attention to a pleasant activity or memory. A favourite song, a photo album, or a simple task can sometimes help.

Addressing Physical Needs

Sometimes, sundowning behaviours are a direct result of an unmet physical need that the person cannot express. Becoming a detective to identify these needs is crucial.

Check for Discomfort:

• Pain Management: Ensure any chronic pain is adequately managed. Consult with their GP or specialist if you suspect pain is a factor.
• Hunger or Thirst: Offer a light, easily digestible snack and a drink in the late afternoon. Avoid caffeine and excessive sugar in the evening.
• Toilet Needs: Establish a regular toilet schedule to prevent discomfort from a full bladder or bowel.
• Medication Review: Discuss with their doctor if any medications could be contributing to sundowning or if timing needs adjusting.

Supporting Yourself: The Carer’s Well-being

Caring for someone experiencing sundowning can be emotionally and physically exhausting. It’s vital to remember that your well-being is just as important as your loved one’s.  Looking after yourself is not selfish – it’s essential.

Seek Support

You do not have to face this alone. There are numerous resources and networks designed to support carers in the UK.

• Support Groups: Connecting with other carers who understand your experiences can provide invaluable emotional support, practical tips, and a sense of community. Organisations like the Alzheimer’s Society and Dementia UK offer local groups and online forums.
• Respite Care: Don’t feel guilty about needing a break. Explore options for respite care, whether it’s a few hours a week from a local service or a short stay in a care home. Even a small break can help you recharge.
• Professional Help: If sundowning is severely impacting your loved one’s quality of life or your own, speak to their GP, a dementia specialist, or a mental health professional. They can offer further advice, medication reviews, or refer you to specialist services.

Self-Care Practices

Prioritising your own physical and mental health is paramount to sustainable caregiving.

• Prioritise Rest: Aim for adequate sleep whenever possible. This might mean adjusting your own schedule or seeking help to ensure you get uninterrupted rest.
• Healthy Lifestyle: Maintain a balanced diet and incorporate regular physical activity into your routine. Even short walks can help clear your head and reduce stress.
• Stress Management: Find coping mechanisms that work for you, whether it’s mindfulness, reading, listening to music, or spending time in nature.
• Educate Yourself: The more you understand about dementia and sundowning, the better equipped you’ll be to manage it, and the less likely you are to blame yourself or your loved one.