Don’t let the sun go down on me

Of all the words associated with the various symptoms and effects that dementia can have on a person, ‘sundowning’ is one of the most curious. It is a word to describe when a person with dementia becomes more active and/or distressed later in day. This activity and/or distress coincides with the light fading as the sun goes down, hence how we arrive at the word ‘sundowning’.

At this point I should stress, as I have many times in the past in other blog posts, that I’m not a fan of labelling people with dementia. I no more like the term ‘sundowner’ than I like ‘wanderer’ or ‘feeder’. Sundowner may also be bracketed with describing a person as ‘aggressive’, since one of the ways in which a person with dementia may express themselves during a period of sundowning is through physical or verbal interactions that, for them, are the only way they feel they can communicate how they are feeling.

Aggression, as I have written about previously, is always going to be linked somehow to an unmet need, which is true of anything labelled a ‘challenging behaviour’(another term I dislike immensely). With this principle in mind, it’s vital that we unpick the key elements of ‘sundowning’ to understand what the person with dementia is experiencing, and why they might react in the way that they are.

The link to the time of day and the levels of natural light is very interesting. It is certainly my experience, and something many people I’ve spoken to agree with, that any problems or anxieties you may have in your life always seem worse as darkness descends and throughout night time. Even as a child, I would be anxious at night in a way that I would never be when I woke up in the morning. Daylight seems to make us feel more in control of our emotional responses, whereas night time makes us feel more vulnerable.

There are also other important elements at play for a person who is living with dementia. Firstly they may be unsure of the time, so find light fading very confusing and distressing. They may not feel like they have had a ‘daytime’ at all, so why should the light now be fading and bringing darkness back? The person may feel like they’ve been in darkness very recently, particularly if they’ve had their eyes shut through choice or because they’ve been sleeping, and find it disturbing that darkness is returning so soon.

Many people with dementia lose track of their sleeping patterns, and may sleep during the day, which again can disrupt those natural rhythms of daytime and night time. Visual disturbances, like hallucinations, are also strongly associated with darkness, which could make night time very frightening. Then there is the problem that day times for people with dementia can often be quite boring and not filled with enough activity, and physical exertion, to welcome the cues that come from the light fading that suggests rest, relaxation and bedtime. The person may simple feel that night time isn’t what they want, or need, at all.

One of the best examples I’ve promoted to support a person through difficulties experienced later in the day is to make that support proactive rather than reactive. Combatting problems that arise later in the day begins in the morning, as the person gets up. Their day needs to be filled with as much occupation and activity as that person can cope with, good levels of nutrition and hydration (this is vital to fuel the body and help the mind to process what is happening around the person) and ideally involve some fresh air. If the daylight hours can be filled with as much ‘normality’ as possible – and no boredom – the evening time will hopefully be welcomed as a time for rest, relaxation and eventually sleep.

For people with dementia who still want to keep on the go into the evening, bear in mind that they may be conditioned to this from their earlier life where they may have come home from work, had to cook, help children with homework and their bedtime routines, and then still needed to do housework – washing up, laundry etc – or paperwork before they could begin to relax. To them, that is their normality, and not ‘sundowning’.

Eventually winding down the day in a way that the person with dementia finds familiar and comforting, like having a bath, meal or favourite drink (yes, even an alcoholic one if wanted and medication allows that – remember that we are supporting an adult, not a child!), with music playing, some reading (on paper or via audio book) or a film can also help to trigger those soothing evening cues. Be mindful that light from electronics (like TV) aren’t welcome for everyone. It may also help the person to take an evening walk if that’s something they feel comfortable with and perhaps used to enjoy (for example, they may have always taken the dog for a walk in the evenings, or walked home from after school activities or work). Just bear in mind that walking outside in fading light or darkness can present additional tripping or falling hazards, and could terrify some people with dementia, particularly if they are having visual disturbances, so approach this carefully (being mindful of also not becoming risk adverse in relation to health and safely issues).

Finally, think about how the person’s environment supports them as the light fades and darkness comes. Is artificial light supporting them well? Dingy light may affect their mood. Some people may prefer some ‘daylight lighting’ that helps combat feelings of SAD (Seasonal Affective Disorder), while others will want warm, soft lighting. Lighting that helps navigation around the home or care home is important, be that overhead or floor level. Think about other ‘cosy’ cues too, particularly in the wintertime when periods of darkness are so much longer – lighting up an open fire effect heater for example, or lights that look like candles.

If you are a professional care worker, understanding the person’s life history will be vital in supporting them to cope with evening time in the most appropriate way for them that minimises any distress they are feeling. Above all though, remember that however you support a person as the sun goes down, their reactions aren’t about making your life more difficult (at a time when you are possibly feeling fatigued yourself after a long day), but merely a manifestation of how they are feeling as a result of their dementia.

Until next time…

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One thought on “Don’t let the sun go down on me

  1. I have found, however, that if mum has done too much, had too busy a day, the evenings are noticeably worse – as if her mind is simply too tired to cope. It's really delicate balance but the right company from about 5pm seems essential. If she is very agitated she tries to make us go away so she can scream and run. We have to try to find tactful ways to hang on in there until that moment passes.

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