Challenging behaviour in dementia

As dementia progresses, people can start to display behaviours that are sometimes called ‘challenging’. These behaviours can be difficult for others to manage, put the person or others in danger or compromise the person’s dignity.

These ‘challenging’ behaviours are more common in people with more advanced dementia, and those with dementia that affects the frontal lobe of their brain, the part of the brain responsible for impulse control, personality and some behaviour, among other things. Dementia symptoms are highly individual though, so anybody could display challenging behaviour.

Some medical professionals dislike the term ‘challenging behaviour’ so you may see it called ‘behaviours of concern’, ‘severe dementia’ or ‘advanced dementia’.

Behaviours that can be challenging

Behaviours seen in dementia that can be considered challenging include:

• Violence and physical aggression to others
• Hurting themselves
• Throwing or damaging objects and property
• Verbal abuse
• Shouting or screaming
• Lying, though it can very often be the case that they believe they are telling the truth but are experiencing confusion, false memories (confabulation), hallucinations or delusions due to their dementia
• Poor personal hygiene or dirtying/damaging their or other people’s property with bodily fluids or faeces
• Being sexually inappropriate
• Eating inedible things or refusing to eat much at all, risking malnutrition
• Refusing care or medication despite really needing it
• Following you around or being clingy, also known as shadowing

Why do challenging behaviours happen?

As the person’s dementia progresses, more brain functions are inhibited. These can include their ability to control their behaviour or what they say (their ‘filter’), to communicate how they feel effectively, their personality and their understanding of their environment and information given.

All this can mean that, often, a challenging behaviour occurs because the person is trying to communicate or express something. It could be that they are in pain, discomfort or emotional distress.

How do care providers manage challenging behaviour or behaviours of concern?

Care providers use various skills and safety measures to support people who have behaviours of concern.

Sometimes it is necessary for people with these behaviours to live in a care home or care home unit that specialises in these behaviours. This is to keep them, other residents and staff safe, and their environment, activities and care plan are specially designed to support their needs.

Find out how one care provider provides specialist care for behaviours of concern here.

Drugs for challenging behaviours in dementia

There are various medications available to help the person with symptoms that contribute to their behaviour, such as drugs to reduce anxiety, depression or hallucinations.

Their GP will be able to prescribe medications if it is in their best interest to take them.

Managing challenging behaviours yourself

Communicate

Learning to communicate effectively with someone with dementia can be a great help to their wellbeing, as well as your relationship with each other. If they are displaying challenging behaviour, the likelihood is that they are trying to communicate something, so it’s essential to support them to express this more effectively.

Tips on communicating include:

• Remain calm and help them to calm down. Shouting could agitate or frighten them further and worsen their behaviour
• Use reassuring touch, such as holding their hand or gently rubbing their shoulder, if they are okay with this
• Speak to them clearly, but not as if they were a child. Nobody wants to feel patronised
• Focus the conversation on understanding why they are behaving the way they are, rather than reprimanding them for it as if they were a child being naughty
• Ask them about how they are feeling
• Think about the emotions behind what they are saying. For example, the person is yelling that their husband is out cheating on them. You know their husband died years ago but rather than correcting them on that, you could validate that they are feeling abandoned or unwanted, betrayed (possibly by somebody recently but this is how they are making sense of the feeling) or missing him, and support them with that

For further advice on speaking to someone with dementia, see our article, ‘How to speak to someone with dementia‘.

Look at possible emotional causes

Think about what the person is saying or doing, as well as what has been happening to them recently.
You may be able to deduce that they are:

• Not feeling listened to
• Being infantilised or patronised
• Their property or space not being respected
• Uncomfortable around a certain person – nobody gets on with everyone and a person with dementia can dislike someone, as any person can, or they may feel scared or anxious around them
• Uncomfortable in a certain environment – overwhelmed, lost, bad association with the place
• Scared
• Lonely
• Missing deceased loved ones
• Bored
• Being reminded of an unpleasant memory

Figure out if they’re in pain 

The person may be in pain, itchy, hot, have been incontinent, or some other form of physical discomfort.

There are signs of physical discomfort you could check for by following the example of the Abbey pain tool. Check for:

• Vocal signs, such as whimpering or groaning
• Facial expressions that suggest discomfort
• Body language, like clutching a part of their body, writhing or limping
• Behavioural changes, as well as the challenging behaviour they may have been quiet and withdrawn recently, or refusing to eat
• Physiological changes, which means checking their temperature, pulse or blood pressure, or looking for signs that they are very hot or cold
• Physical changes, such as an injury, flare up of a condition they have, bed or pressure sore, even insect bites or sun burn

Rule out other causes

As well as immediate emotional or physical distress, there may be an underlying cause that is affecting the person’s behaviour.

Some possibilities include:

• Dehydration – lack of water, especially in hot weather, can lead to delirium which can temporarily slur speech, cause mood swings, confusion or even hallucinations
• Urinary tract infection – as well as becoming incredibly painful if left untreated (as the infection reaches the kidneys it can cause immense pain in the lower back), UTIs can affect behaviour, including signs of delirium
• Chest or other infection, which may cause temporary physical symptoms
• Bad reaction to a new medication
• Increased use of alcohol or drugs (not necessarily illegal drugs, taking too much medication could be causing them to feel unwell)
• Mental health issues, such as undiagnosed or untreated depression or anxiety
• Lack of sleep

Supporting the person to visit their GP can help to rule out possible causes or aggravators of their behaviour.

Find ways to help them communicate

You could support the person to find other ways to express their emotions. Some methods that have been shown to help people with dementia to express themselves include:

• Music, both listening to and making. Find out about the benefits of music for people with dementia, special dementia radio and playlists and group singing sessions here
• Creative pursuits like arts and crafts, model making or writing
• Exercise

Other methods to help them to feel calm include improving their diet, interacting with animals or getting them a dementia doll.

Distraction

While it’s crucial to always treat a person with dementia with dignity and respect, nor should their memory problems be used against them, sometimes it can be beneficial to distract them or change the subject if they are agitated. 
If they are clearly distressed by something important, you ought not do this as it will not help them to manage the emotion which will only resurface later.

However, if they are momentarily agitated by something small, changing the subject of conversation, offering them a cup of tea or asking if they’d like to do an activity together that you know they enjoy can quickly calm them.

Protecting yourself

Unfortunately some challenging behaviour in dementia can be emotionally distressing or exhausting to those who care them, or even physically dangerous.

It’s important to look after yourself as well as the person who lives with dementia. You should never feel guilty about prioritising your needs as well as theirs – if you do, remind yourself that you can’t give as effective care if you are mentally or physically unwell.

Ways to protect yourself could include:

• Making time to care for yourself, including eating well, exercising and taking part in activities that you enjoy.
• Organising respite care. It’s normal to need a break and never doing so may lead to carer burnout.
• Seeking support with the person’s care, such as through a Carer’s Assessment or arranging professional home care.
• Getting emotional support for yourself, such as counselling or contacting one of the helplines at the bottom of this article.
• If the person is putting you or themselves in physical danger, you must contact social services or even, in an emergency, the police.

Online courses

You may find it beneficial to take part in training on how to manage challenging behaviour. These are usually made for care staff but it could be useful to you to learn the skills they use.

Make sure any courses you find are related to dementia, rather than childcare or supporting people with learning disabilities or mental health issues (unless it’s relevant to your situation).

There are some online training courses (for a fee) here.

Helplines

Admiral Nurse Dementia Helpline	0800 888 6678	helpline@dementiauk.org
Alzheimer’s Society	0333 150 3456	Dementia Connect
Age UK	0800 678 1602 Phone line open 8am – 7pm every day
The Silver Line	0800 4 70 80 90 Phone line open 24 hours a day for older people looking for support, friendship or conversation.
Carers UK	England: 020 7378 4999 Scotland: 0141 445 3070 Wales: 029 2081 1370 Northern Ireland: 02890 439 843	advice:carersuk.org