When a person living with dementia loses the ability to communicate effectively with verbal language, attend to their own needs, or solve their own problems, they may exhibit different ways of showing they are distressed. Others may perceive these behaviours as unwanted, irrational, or problematic and try to contain them. But such behaviours may be the person’s only way of communicating pain, frustration, loneliness, fear, boredom, and unmet needs such as a full bladder or hunger.

“Responsive behaviours”, “changed behaviours” or “expressions of unmet needs” are terms commonly used to refer to behaviours displayed by a person living with dementia when they are responding to the feeling of something negative, frustrating, uncomfortable, or confusing in their body, mind, or environment.

These behaviours can be in the form of:

• Aggression
• Agitation or restlessness
• Anxiety
• Wandering
• Searching for items or people
• Paranoia or suspicion
• Not wanting to do things others want them to do
• Taking items that are not theirs
• Making unexpected or repeated noises
• Repeating activities
• Becoming more withdrawn

It is important for those caring for people living with dementia to understand that dementia is not a natural part of ageing and that it causes actual changes in the brain affecting memory, perception, judgement, language, orientation, mood, impulse control, and behaviour. It is also important to understand that the person whose behaviour has changed, or who is using language they would never have used in their life before, is acting as a result of their disease and not out of any intent to cause harm, trouble, or offence, and not because they are in any way a bad person.

The power of words

The words we use to describe both the condition of dementia itself and the resultant behaviours are as important as the actions and responses we choose when confronted by certain actions and words from a person living with dementia. Our responses as carers, should be compassionate, person-centred, based on in-depth knowledge of the individual, and attempting to understand what they need or would like at each point in time.  Generic, superficial behavioural support strategies are often put in place, but they fail to provide knowledge-based information to carers. Positive communication and informed responses can help a person with dementia maintain their dignity, trust, and self-esteem.

Referring to a person living with dementia in terms that imply they are a problem or are doing something wrong can affect the way carers and staff respond to and interact with them. Negative framing of behaviour can lead to staff chastising or attempting to control, or even punish, the person. Treating them with empathy and respect while actively seeking to identify and resolve the issue leading to their distress will result in much better outcomes.

Insights not impediments

If a person is described in negative terms and thought to be deliberately doing something wrong then responses to their behaviours are more likely to be controlling, reprimanding or punitive. Conversely, if they are described as upset, distressed, or experiencing something uncomfortable or frightening then responses are more likely to be compassionate and directed towards care and problem solving.

Consider the following terms, sometimes used to describe an aged care resident or their behaviour:

• acting up
• arcing up
• behaving badly
• being a problem
• being naughty
• absconding
• escaping
• resisting
• refusing
• making a mess
• disturbing
• intruding
• stealing
• annoying or irritating

Now think about how using these terms might affect people’s views of, and their responses to, that person. Everyone deserves respect.