Coping with the complex needs of dementia

The most common sign of dementia is memory loss, but there are many other behavioural changes that can occur when someone is living with the condition.  

From a sudden tendency to swear to walking with purpose, these new behaviours can be difficult for family and friends to deal with, especially if this is their first experience with dementia. It's important to understand that people who live with dementia are often trying to communicate an unmet need or respond to something in their environment, but their dementia leaves them unable to say what they mean.

'Challenging behaviour' in dementia is not a natural or normal symptom. It is most often caused by the actions of those around the person with dementia or by their environment.

Types of behaviour that challenge 

A recent survey by Care UK revealed that 71% of relatives wished they’d known more about changing behaviours that their loved one with dementia might experience. It’s no surprise when changing behaviours can occur from the very outset. A diagnosis might spark feelings of fear or shame that cause your loved one to feel distressed, refuse to talk about their situation or even accept their diagnosis.  

Other challenges, like aggressive behaviour, arise when someone living with dementia’s needs are going unmet. ‘Walking with purpose’, often referred to as pacing, is a common sign of dementia. Although it might seem that this ‘wandering’ is aimless, there is usually a reason behind it – for example, the person had a destination in mind but has forgotten where they are going, they are reliving an old routine or they are simply bored. Once you know the purpose behind the behaviour, you can take steps to meet the individual’s needs. 

Even subdued behaviours such as repeating questions can become challenging for friends and family to cope with. In this instance, think about what the person could be trying to communicate beyond their specific question – maybe their question about when they can go home is signalling that they don’t like something about their environment. 

Personality changes with dementia 

Changes in personality occur when dementia damages certain areas of the brain, for instance those that control communication. A person that was once quiet and calm may begin swearing and shouting, or even become physically aggressive. People living with dementia may also experience increased anxiety levels or mood swings that cause them to feel distressed. 

These out-of-character responses can give clues to what your loved one really wants to say. For example, they might be in pain or feel overwhelmed by a noisy or cluttered environment. They may start to believe events from the past are happening now or even see hallucinations which can cause confusion or upset. 

Triggers of complex needs in dementia 

Understanding the unmet need behind a new behaviour is the first step towards responding to your loved one. 

For example, if your mum is walking with purpose, try channelling the desire to walk into a meaningful activity, such as a walk in the garden. Care homes provide safe places where older people with dementia can walk and explore, and carers are specially trained to actively engage people who show signs of walking with purpose. 

While some new behaviours will be challenging for friends and family to understand, if they don’t cause any harm, it is important they accept their loved one’s choices, be it showering less often, going barefoot or starting a relationship with someone new. 

When challenging behaviours take an aggressive turn, however, it is important not to take the behaviour personally. Try to create a calming environment with their favourite music to distract them or change the conversation to a familiar topic. Remember that you’re not alone, and support is available. 

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