Behavioural changes

Although it is widely understood that dementia affects memory and the ability to perform everyday tasks, fewer people appreciate that many of those living with dementia also develop changes in their personality, behaviour, or temperament.

These changes are part of a group of dementia symptoms known as the behavioural and psychological symptoms of dementia, or BPSD for short. It’s thought that at least 9 out of 10 people with dementia will experience BPSD as part of their illness.

Dementia affects everyone differently, and symptoms vary depending on the type of dementia, the part(s) of the brain that are affected, and the stage or extent of the disease.

It is common for those affected by dementia – the patient, friends, relatives, and carers – to find BPSD distressing.

Common behavioural changes can include apathy, agitation, or aggression.  Sometimes, the behaviour can be embarrassing and socially inappropriate – lewd, rude, disinhibited, or overtly hypersexualised. Occasionally, those affected can be impulsive or develop compulsive habits.

Terms such as “difficult behaviours” or “challenging behaviours” are commonly used to describe these behavioural changes in dementia. However, these are unhelpfully negative and also imply that the behaviour is intentional when it is actually a symptom of dementia affecting brain function.

In reality, they are “behaviours that challenge” those around them to understand and respond in ways that can help.

Responding to BPSD can be difficult for all concerned. It is not always easy to understand why someone is behaving in a certain way when they cannot express themselves clearly or respond to questions. The following principles can help you understand and help someone with dementia and BPSD.

Dementia affects how well someone can process and act on information in order to communicate appropriately and effectively.

The disease can make it difficult for those affected to:

• follow conversations
• respond to questions or instructions
• express themselves, their needs, feelings or concerns
• interpret facial expressions or body language
• respond appropriately to social or emotional cues
• act in ways which are appropriate for different situations
• modify their behaviour

These challenges mean that behaviour can sometimes be used as a form of personal expression. For example, if someone with dementia acts out in an angry or irritated way, it can mean that they feel distressed.

The distressed behaviour might reflect feelings of being frightened, confused, frustrated, or in pain. Similarly, repetitive activities might represent a form of self soothing in the face of anxiety, pain, and confusion.

Understanding that behavioural changes in someone with dementia, can often signal inner confusion, pain, or distress can prompt you to apply some detective skills and consider any explanations or triggers for the behaviour. Consider whether different people, situations, or activities might be contributing.  You might find the PIECES and ABC tool helpful.

Adults living with dementia can find it harder to respond to their environment.  They might become angry, agitated, or frustrated when faced with lots of external stimuli, which makes it harder for them to understand or follow what is going on.  Crowds, clutter, and noise can all be over-stimulating or make life harder.

A quiet and familiar environment can make it easier for someone with dementia to understand and respond to the stresses and strains of everyday life and help them feel more in control. Similarly, a regular daily routine can also provide a source of comfort and promote a sense of predictability, familiarity, and control.

Respond with patience

Be patient, calm and don’t take things personally. A sense of humour can help.

Although it is not easy, it is important to recognise that behavioural changes are due to real difficulties in understanding and responding to situations rather than because the person affected is deliberately trying to be difficult. Remember, dementia affects the brain and the ability to consider and respond to how other people feel.

If someone is agitated then responding with patience and calm is likely to have a soothing effect whereas anger and irritation might make things worse.

If they find conversations or situations difficult, many people with dementia will look to others for hints or cues to help them understand what is going on.  If you appear anxious, agitated or angry then they will pick up on and mirror those emotions with related behavioural changes.

Use distraction rather than confrontation

Repetitive, agitated or potentially harmful behaviours can often be relieved by activities which distract and shift attention. Find ways to substitute the behaviour with other activities such as helping with simple tasks (laundry, housework) or creative pursuits like singing, dancing or craft.

Avoid appearing threatening

Consider how your behaviour can impact others who may be feeling confused or vulnerable.

• Do not invade their personal space
• Help from the side rather than face-on
• Do not argue  – accept that they are right and you are wrong
• Take things slowly, don’t rush or pressurise
• Smile and be friendly
• Explain as you go to avoid unexpected surprises