Common Behaviours

Agitation or aggression

The person you care for may resist help, they may shout, grab, or hit out. There can be several different reasons for this type of behaviour, so try to put yourself in the person’s shoes to understand what is bothering them. They may be frustrated by communication changes or finding everyday tasks more difficult. They may be in pain and be unable to communicate this clearly. The person may feel threatened and/or become angry if they feel they are not in control in a situation. Sudden changes in behaviour can also be caused by infections (such as urinary or respiratory) that are treatable.

Ideas that may help:

• Try to remain calm and avoid arguing or reasoning. Instead, acknowledge how the person is feeling and reassure them, e.g., “I can see that you are upset. I am here”.
• Ask the person if they have pain, or look for signs of pain and discomfort, e.g. wincing, grimacing, clenching teeth, groaning, frowning.
• Offer a drink or snack.
• Take a short walk or outing to provide a change of scenery. Being outdoors can help improve a person’s mood.
• If the person likes closeness, they may like you to stay near them to provide comfort and reassurance. On the other hand, they may prefer to be left alone for a short time. When re-approaching, avoid bringing up the previous incident and try to move on to something new without dwelling on what happened before.
• Ask the person’s GP to complete a urine or blood test if you notice a sudden change in behaviours.

Sleep changes

The person you care for may wake very early or many times during the night, or they may sleep more during the day. There are many reasons why a person may have difficulty sleeping. These include needing to use the toilet, feeling hungry, thirsty, too hot/cold, experiencing pain, or having too much caffeine. Good sleep is important, and disturbed sleep can be both a sign of delirium and something that contributes to it.

Ideas that may help:

• Speak to the person’s GP to rule out a physical cause (e.g., delirium or untreated pain).
• Think about the bedroom environment. Is it a comfortable temperature – not too hot nor too cold? Is it free from noise and too much light?
• Think about how the person has always slept. Did they like to take a hot water bottle to bed in winter months, for example?
• Cut down on caffeine and alcohol. If the person enjoys a cup of tea in the afternoon/evening, try switching to decaf.
• Stay as active as possible during the day and avoid sleeping in the afternoon.
• Try to get at least 30-60 minutes of daylight exposure every day – this helps to reset the ‘body clock’ and can help to regulate sleep patterns.

Wanting to leave

The person you care for may attempt to leave. They may become agitated, walk around asking to go home or appear distressed and talk about family members. When stopped from leaving, they may become more agitated and upset. They may not recognise the place as their home and may not recognise the people around them. This could be the person trying to fulfil a long-held responsibility, e.g., going to work or picking children up from school. This can happen even if they no longer work, or their children have grown up. The person may be seeking out a place that looks familiar, or where they feel more comfortable. They could also be trying to find a toilet. The person may be unwell or experiencing pain and be unable to express this.

Ideas that may help:

• Remove and store items out of sight that may make the person want to leave, such as keys, coats, handbags, and suitcases.
• Ask the person what they are doing and where they want to go. Give them time to talk about why they want to leave and provide reassurance about their wishes and concerns.
• Try to distract or re-direct the person’s attention to something that they enjoy.
• Think about the environment the person is in? Has it changed recently? Are there ways to make it feel more familiar, e.g., adding family photos, pictures, mementos and their favourite music?

Personal care

You may notice changes to the person’s daily personal care routine, they may tell you they have already bathed, or decline offers of help. Changes in personal care may be due to a range of reasons, for example, the person may have pain, or feel very cold before, during, or after showering/bathing. They may not recognise the toilet or shower or have forgotten what these are used for. If the person is declining help during personal care, they may feel embarrassed or fearful of someone else being there, they may feel a loss of independence and sense of being out of control of the experience, or they may not understand what you are asking of them.

Ideas that may help:

• Consider the person’s preferred time for a shower or bath, e.g., do they prefer a warm bath before bed, or have they always taken a morning shower?
• Ask the person if they have pain, or look for signs of pain and discomfort, e.g., wincing, grimacing, clenching teeth, groaning, frowning. Address any pain before helping with personal care.
• Think about the bathroom environment. Is it warm enough and well lit? Turn the water on as a visual and auditory prompt.
• Encourage and prompt the person to do as much as they can for themselves, e.g., taking their clothes off, using a face cloth.
• Sometimes using music can reduce anxiety for everyone involved. Trial playing some favourite music in the background as the person is getting ready for showering or bathing.
• If the person becomes agitated, take a step back and stand quietly until they are ready for you to help again.
• Be realistic with expectations and flexible; showering a couple of times a week is perfectly acceptable for most people. Does the person accept help with certain tasks but not others? Accept the wins, make a note of what worked well and what did not.

Apathy

The person you care for may appear to have lost interest in the world around them. They may seem less interested in their usual activities, or the activities of others, but may participate in activities if prompted or encouraged. They may no longer take a role in the household and sit quietly without paying attention to things going on around them. They may not start a conversation and may show little interest in friends or family members. The person may have forgotten how to do an activity, they may have forgotten to do the activity or their apathy may be preventing them from initiating the activity.

Ideas that may help:

• Try to maintain a daily routine and keep this visible (for example, using a calendar or chalkboard).
• Use things you know the person enjoyed before to help get them started with activities, e.g., exercise, music, gardening, making food, creative activities, looking after pets, visiting friends and family.
• Break things up into smaller steps. Start doing something with the person until they continue by themselves – show rather than tell.
• Try positive phrases like “It’s time to go on our morning walk.” rather than asking the person if they would like to go, as they’re more likely to say no if they are experiencing apathy.
• Don’t worry if things don’t work the first time, or every time. Having a range of strategies to draw on will let you try different approaches to see what works best for you.

Disinhibition

The person you care for may say or do things which seem out of character or rude. They may behave in ways that others find upsetting or embarrassing because the behaviours may be perceived as socially inappropriate. Disinhibited behaviours may include making tactless or offensive comments, taking clothes off in an unexpected setting/situation, talking to strangers as if they know them, or loss of sexual inhibition (e.g., making sexual comments in public). The person may not understand why others are embarrassed or distressed by the behaviour. These behaviours may occur due to changes in the brain, triggers in the environment, or through illness. The person may be responding to a situation that they have misread or misunderstood. Loss of inhibitions is more common in certain types of dementia, such as frontotemporal dementia which causes damage to the frontal lobes in the brain.

Ideas that may help:

• Try to remember that the person is not deliberately trying to offend or embarrass you.
• Remain calm and try not to react in a negative way, which may make the situation more difficult. A quiet response to reassure will be helpful, even though you may find the situation embarrassing or distressing.
• Redirect the person’s focus onto something else and, if necessary, move to a different environment.
• Consider the potential causes above – could any of these explain the behaviours? A quick mental checklist of is the person confused, uncomfortable or misinterpreting a situation may help to identify the cause and support you to respond.

Hallucinations

The person may seem to see or hear things that are not there. Hallucinations in dementia are most commonly visual but can involve other senses like hearing and touch. Hallucinations may be a result of sensory changes or be a result of physical changes or a response to medication.

Ideas that may help:

• Remember that what the person is experiencing is real to them and may be frightening or make them angry.
• Validate what the person is feeling because of the hallucinations. By doing this you are not agreeing that the hallucination is real or denying its existence. Instead, you are letting the person know that you understand what they are feeling and believing.
• Speak to the person’s GP about possible physical causes, such as delirium, dehydration, urinary tract infection, chest or other infection or reactions to medication.
• Arrange for the person’s eye health and vision to be checked. Hallucinations may be related to some eye condition that can cause vision loss.
• Change the environment – this may help to distract the person from a distressing image and focus their attention on another topic or activity that they enjoy, e.g., a walk in the garden.