The words we use to talk and write about dementia affect how people with dementia are regarded and treated.
Top 3 messages about rethinking 'sundowning':
Generalised language ignores the individual experience of a person living with dementia.
Changed behaviour is an individual response to something and an attempt to communicate an unmet need.
Entering the person’s world to try to understand their needs can help reduce changed behaviour.
The words we use to talk and write about dementia affect how people with dementia are regarded and treated. Our language often frames – or even creates – stigma and discrimination.
‘Sundowning’ is an example. It’s a colloquial and imprecise term used to describe changes in behaviour at a certain time of day: ‘sundown’.
This term is an inaccurate label. It does not capture why a person living with dementia might be responding to their environment in a particular way or at a particular time.
Changed behaviour and unmet needs
Every person’s experience of living with dementia is different, depending on their diagnosis, social background, circumstances, personality, environment and many other factors.
Dementia Australia CEO Professor Tanya Buchanan noted that changes in mood, behaviour or emotional state can be experienced by anyone, but the triggers for a change may be harder to identify for someone living with dementia.
‘This can be challenging for everyone,’ Professor Buchanan said. ‘A person with dementia will react differently to the people and places around them, and their behaviour can change in many different ways.’
‘Changed behaviour’ is a preferable and more accurate way to describe this diverse response.
Changed behaviour is often related to an unmet need. For example, the person is experiencing pain, anxiety or emotional distress, or they have some other need that is not being understood or appropriately responded to. The changed behaviour is an attempt to communicate that unmet need.
Exploring changed behaviours
Dementia Australia Dementia Advocate and Advisory Committee member Gwenda Darling was diagnosed at 59 with younger onset behavioural variant frontotemporal dementia. This form of dementia affects personality and behaviour.
Gwenda believes the actions and reactions she experiences are often related to factors like dehydration, pain and fatigue.
‘The more tired I am, or the more pain I am in, the more reactive I am,’ Gwenda said. ‘The biggest danger for me is dehydration.’
Gwenda recalls a time she became reactive when at a local pharmacy in the afternoon. ‘I was followed around and asked if I was going to pay for my items. I was offended by this and spoke out to the staff.’
When Gwenda came home, she realised she had drunk very little water all day and noted that her dehydration had impacted her mood and way of engaging with others.
Gwenda stresses the importance of people living with dementia maintaining familiar routines to support wellbeing and independence and reduce the potential for changed behaviour.
‘I like to try and do things on my own. I won’t always be able to, but don’t try and stop me from doing what I can do.’
Gwenda is a passionate dementia advocate, spending time visiting people living with dementia in residential aged care and speaking with care staff.
‘I think a lot of mood or behavioural responses are a reaction to the external environment. If someone is experiencing a changed behaviour at shower time or mealtime, I tell staff, “Can you find out why? Who is the person? What were their previous habits?” This can help you understand.
‘People may be reacting or responding differently if they are not experiencing familiar routines they have maintained for most of their life.’
Changed routines, changed behaviour
Thinking about the impact of the social and physical environment in the late afternoon and early evening is vital in understanding a person’s actions.
For example, what was their previous daily routine? Did the person collect children from school or prepare the evening meal? Did they have other late afternoon or early evening routines and commitments that might be triggering anxiety, restlessness or distress? If so, how can they be supported and their anxiety or distress be reduced?
Dementia Australia Dementia Advocate Georgina Breeuwer’s mother, Dorothea, is living with dementia. Dorothea has lived with family carers at home, including Georgina, and in various residential aged care facilities. Georgina recalls Dorothea experiencing changed behaviours in mid-mornings and/or mid-afternoons, with no definite trigger noticed.
Georgina shared that her mother experienced changed behaviours, such as agitation when walking or leaving the house, and paranoia or wanting to ‘get away’ from Georgina when she was providing care.
‘There were a lot of challenging times. I found the path of least resistance was best,’ Georgina said.
If Dorothea began walking around searching for her own mother, who had passed away years ago, Georgina chose not to intervene.
‘I would say, “Okay, let’s go”, and we would walk down the street until her anxiety would pass, then I could redirect her. It’s not always about validating their beliefs but just supporting them to be in that moment until it passes.’
Georgina is frustrated by the idea that care workers might not offer activities or engagement with people living with dementia to avoid the potential for changed behaviour. Thinking about who the person is, what their past experiences were and trying to understand an unmet need is a more effective approach to reducing changed behaviour.
‘Mum doesn’t enjoy bathing or getting dressed, and this could at times lead to agitation. I know Mum loves singing and music, so while she was getting dressed, I would sing or try to engage her in another way.’
Georgina is passionate about an inclusive approach and supporting the dignity of her mum and other people living with dementia.
Addressing unmet needs
Unmet needs caused by physical, emotional and environmental factors are the primary cause of changed behaviour.
It's important to remember that the resulting changes in behaviour are an attempt to communicate that unmet need. Try to enter the world of the person living with dementia in order to understand these factors – there could be more than one reason or trigger. Trying different forms of support and addressing unmet needs can often relieve the person’s distress or anxiety and mitigate changes in their behaviour.
Changes in behaviour should be understood as a form of communication and not stigmatised or minimised by labelling with terms such as ‘sundowning’.
Adopting the perspective of the person with dementia, understanding the environment from their point of view, and meeting their needs is the most effective way to reduce changed behaviour and support wellbeing.
Resources
For more information about understanding dementia and changed behaviours, contact the National Dementia Helpline. The helpline operates 24 hours a day, 7 days a week, 365 days a year. Call 1800 100 500 or visit dementia.org.au/get-support/national-dementia-helpline for email and live chat options.
The trained advisors can provide information, advice and support or help to connect you to services and education programs, including carer support groups and counselling.
For comprehensive resources about changes in mood and behaviour changes, visit Dementia Australia’s Mood and Behaviour Changes webpage.
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