Rethinking ‘sundowning’: ‘unmet needs’ in people living with dementia

The words we use to describe dementia affect how people with dementia are understood and cared for.

Top 3 messages about rethinking 'sundowning':

1. Generalised language ignores the individual experience of a person living with dementia.

2. Entering the person’s world to try to understand their needs can help to reduce distress and enhance wellbeing.

3. Individual responses are usually a direct expression of an unmet need and should not be described as a standalone syndrome of ‘changed behaviour’.

The words we use to describe dementia affect how people with dementia are understood and cared for. Our language often frames – or even creates – stigma and discrimination and can limit empathy or lead to care that overlooks an individual's real needs.

The term ‘sundowning’ is just one example. It’s a colloquial, simplistic and imprecise term used to describe a person’s emotional or physical reaction to certain triggers that may occur at a certain time of day: ‘sundown’.  

Crucially, it focuses on the caregiver’s perspective and overlooks the experience of the person living with dementia. 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. In short, it labels the behaviour – and often also the person – without investigating the possible cause or trigger behind the reaction.

'Changed behaviour' and 'unmet needs'

Everyone – no matter whether they are living with dementia or not – responds in an emotional or physical way to the stimuli around them: if we are stressed, our heart rate may be elevated and we may feel short-tempered; if we are tired, we may find it harder to respond quickly or feel confused.

Similarly, every person’s experience of living with dementia is different – sometimes from moment to moment, depending on their diagnosis, social background, circumstances, personality, immediate or long-term environment and many, many other factors.

Dementia Australia CEO Professor Tanya Buchanan explains that understanding how someone living with dementia might be experiencing a situation can be difficult, especially if they are unable to articulate their perspective.

‘The term ‘changed behaviour’ is often used in care settings as a symptom of dementia. However, it is crucial that these words are not used as a way of ignoring, oversimplifying or dismissing the experience of the person,’ Professor Buchanan said.

‘Language must uphold dignity, avoid stigma and most importantly, acknowledge that someone responding in a certain way is often a response to what is going on for them, not simply a ‘changed behaviour’ that can be explained away as part of dementia.

‘A person may be experiencing pain, discomfort, fear, emotional distress, sensory overload, boredom, loneliness, or something else not yet recognised by those providing support.

‘Failing to explore these possibilities is inconsistent with person-centred care.’

All health, disability, community, and aged care workers should be trained in dementia care and actively identify the underlying causes or unmet needs behind a person’s actions.

Terms like ‘changed behaviour’ or ‘sundowning’ should never become shorthand that overlooks what an individual may be trying to communicate.

Changed routines, changed behaviour

Dementia Australia Dementia Advocate Georgina Breeuwer’s mother, Dorothea, who lives with dementia, has experienced times of agitation and anxiety both at home and in residential aged care.

These changes often occurred in mid-morning or mid-afternoon, and while no single trigger was obvious, Georgina recognised they were expressions of distress, not random behaviour or a symptom of dementia.

She recalls moments when Dorothea would walk around searching for her own mother, who had passed away many years earlier. Instead of correcting her or trying to stop her, Georgina chose a supportive, low-resistance approach.

‘I would say, ‘Okay, let’s go’, and we would walk until her anxiety passed,’ Georgina said.

‘It’s not always about validating the belief, it’s about supporting the person through that moment.’

Georgina also worries that some care workers may avoid offering activities in case they trigger a particular response. In her experience, the opposite is true: activity and engagement often provide fulfilment and engagement.

‘Mum doesn’t enjoy bathing or getting dressed, and that could at times lead to her feeling agitated. But she loves music - so I sing while I help her dress or try to engage her in another way’.

Georgina’s experience reinforces a key message: understanding the person, their history, their preferences, and their emotional needs is essential to care and support.

Reframing 'unmet needs'

‘Unmet needs’ is often used as a more sensitive framing for ‘changed behaviour’. Fundamentally, the term emphasises the physical, emotional and environmental triggers that might elicit a response in someone living with dementia.

Try to enter the world of the person living with dementia to understand and identify why someone might respond in a certain way – there could be more than one reason or trigger.

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 distress 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