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The power of words and insight: caring for people living with dementia

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  • Becoming more withdrawn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.

Personalise your Behavioural Support Plans

Providers and clinical staff should check all current Behavioural Support Plans (BSP) for use of language and negative framing of behaviour and, if detected, amend accordingly. Talk to staff about this.

Also check each BSP to assess whether the strategies described are tailored to the individual (including a biographical history providing insight into the person and their life before) and designed to inform effective care.

Read your BSPs imagining you are a new staff member caring for a person for the first time. Assess the information to see if it’s accessible, user friendly, and really helps the carer/staff understand the person and how best to support and care for them across the spectrum of their daily life.

The Commission frequently sees BSPs that are brief, non-specific, and very similar to those created for other consumers/residents. They do not fulfil the requirement that each plan should be a guide to effectively care for and support the person they were created for, particularly if restrictive practice use is contemplated. In many cases BSPs are demonstrably ineffective, and/or not readily accessible or even used, therefore staff who may be unfamiliar with each resident will have no person-centred guidance to care for them.

Creating BSPs in this knowledge-based way can often prevent distress of the consumer and can reduce the need for use of restrictive practices. BSPs should be viewed as a work in progress, a “living” document. Over time they will provide a user-friendly guide as to which strategies are effective and which are not. They need to be reviewed and updated as information, understanding, and circumstances of the individual change.

Rethink generic strategies

‘Redirection’ or ‘distraction’ means attempting to direct the person away from something they are trying to do or communicate. But think about what you are redirecting them to. Redirection is unhelpful if the actual needs the person is trying to convey are not known. Offering a cup of tea is frequently included on BSPs as a single strategy. It is important to consider that not everyone drinks tea, and if they do most people have very different tea preferences which they may not be able to express. Take note of what works and what doesn’t. If a cup of tea is ineffective it should not remain as a redirection strategy on the BSP. All ineffective strategies should be removed.

‘Reassurance’ by telling someone that everything is all right is not effective if they need the toilet, are in pain, frightened or merely bored. You can only reassure someone effectively if you understand the problem and are addressing it. Reassurance can then be explicit and proactive. People living with dementia may forget that they have recently been reassured and may need to be reassured frequently. Some ways of reassuring a person work better than others and when these become known they should be documented on the BSP to assist other carers.

There are multiple resources and guidelines available online, developed to assist and inform aged care staff, caregivers and anyone who lives with, supports, or works with a person living with dementia. These guidelines can help you promote consistent, respectful language and responses around dementia.

Further resources

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