In this blog I take the main points from a video in which Fiona Chaabane and I explore the phenomenon of sundowning. I have extracted content that might be helpful for people who are supporting a person living with dementia.
Our aim at The Dementia Care Hub is to reduce distress for everyone affected by dementia and support people and families to live as well as they can given the circumstances.
You can find many factsheets about sundowning and dementia, however, there still seems to be a lot of uncertainty about why it happens and what we can do to reduce or remove the observable distressed behaviours.
Research findings around this topic are conflicting. Whilst some researchers and medical professionals declare sundowning in dementia doesn’t exist, others share observations of changes in people’s behaviour at certain times of the day particularly at dusk, hence the name sundowning.
What is clear is that these changes in behaviour can occur, and not just at dusk. When they do they can be distressing and difficult for people living with dementia, their families and carers.
The widely agreed description for Sundowning is:
‘a set of changed behaviours that occur in the evening, around dusk resulting in some people who are living with dementia experiencing higher levels of agitation or anxiety.’
Fiona suggests sundowning is a change in behaviour and presentation of the person becoming more agitated and irritable as the day goes on. This can be early afternoon, teatime or early evening. It can last for a couple of hours or go on well into the evening and bedtime.
Typical observable behaviour could be restlessness, an inability to sit still, the need to leave the space in which they are in, pacing up and down, a need to unpack or sort through drawers. People may show visible signs of confusion about what is going on around them, they may become distressed perhaps cry, they may not be able to articulate what is wrong with them and in some cases people can experience hallucinations. From this list of possible behaviours you can see how this can not only be distressing for those living with the disease but also for loved ones trying to help.
What is the cause of the changes in behaviour?
We think the cause of changes in behaviour relate to circadian rhythm, although this isn't conclusive and does not apply to everyone. Circadian rhythm or more simply put 'the internal body clock' is our brain regulating cycles of alertness and sleepiness by responding to the light changes in our environment. However, when assessing changes in behaviour in dementia it is not as simple as light changes. If it was this could be easily remedied. Other causes of changes in behaviour could be pain, the person may be hungry or thirsty. A person may be in need of a sugar boost, they may have had too much or not enough stimulation that day, they may be tired, they may be experiencing side effects of medication or not be on the right medication. For each person it may be something different which is what makes it tricky to manage.
Given that it may be different for different people the important thing is to identify changes in behaviour and record these patterns of behaviour. This can be difficult for family members and care partners at first because they are living this too. However, it is incredibly important in the long term to record these changes or we may find ourselves going round and round in circles, resulting in higher levels of stress and/or distress for everyone involved.
The importance of capturing patterns of changes in behaviour
In dementia care it is important to examine and explore patterns of behaviour. Medical and social care professionals will be able to support much more if we have a journal of what is going on and when this happens. The information needs to be a pattern, for example, someone being irritable is not a pattern of behaviour however, someone being irritable at say 3pm each day would be considered a pattern of behaviour. Noting what you are seeing, when you are seeing this, how often it happens and where it happens is all really useful information.
As I said this can be quite difficult for carers in the moment to do this, but it is important to record this information in some way, even after the event. This could be done by actively journaling what is going on in a book or on a mobile phone. Once you have captured a few weeks of this you may decide to contact a medical or social care professional to discuss ways forward with the information you have.
What can I do?
From Fiona's experience she says there are some immediate things we can do when a person is experiencing these acute episodes of distress, in mental health nursing they call this Psychiatric First Aid:
Cut the noise down
Cut the stimulus down
Cut the conversation
Does this make a difference to the person's behaviour, if so how?
Other things to look at are:
Is the lighting appropriate?
Does the person feel hot or cold?
Is the environment too noisy?
Are there too many people in the environment?
Are there changes disrupting your usual routines? For example, if a person is getting restless around dinnertime when you would normally sit down to eat, would it be more useful to give the person finger foods? Perhaps even walking around with the food rather than sitting down to eat might help. This might not be what you have always done but dementia changes and disrupts the way life has always been.
Does the person need a sugar fix?
Are you asking too many questions?
Once you have this detail you can then develop strategies that work for you. You can also contact support services to explore support options and medical practitioners to see if there any medications that can enable a person to live as well as they can. It is important to gain support from other people in similar situations by attending carer support groups and engaging with the dementia community. This can help reduce stress, loneliness and isolation.
I hope this blog is useful. Whilst we cannot stop a person living with dementia experiencing anxiety and agitation, our aim is find strategies that reduce the amount of time negative affect is experienced.
If you have any questions of would like support do get in touch at email@example.com
Thank you to Fiona Chaabane for her kindness in taking the time to record the content for the video. If you would like to watch the video you can find it on YouTube by clicking on the link below: