The later stages of dementia

10. Changes in behaviour

People in the later stages of dementia may behave in ways that are out of character. These behaviours can be difficult to understand and there are often different reasons for them. They may be a sign that a person’s need is not being met (for example, they are in pain), or that they are confused or distressed. Often behaviour is a means of communication and can be a result of the person feeling a certain way (for example scared or anxious).

Every person with dementia will behave in different ways, but changes in their behaviour may include the following.

  • Distress or agitation – this may be because the person is confused about where they are, who they are with or what they are meant to be doing.
  • Sundowning – the person may become more agitated and confused in the late afternoon and early evening. This can be caused by a range of factors including disturbance to the body clock, too much or too little sleep, or medication. It may help to give the person something meaningful to do at this time of day and make sure the environment is suitable (for example, not too dark or too light). Going outside during the day (if possible) can help.
  • Aggression – the person may react aggressively for a range of reasons – for example, they may be in pain or feeling threatened, may not understand what is going on (for example, if a carer tries to change their clothes without explaining why) or trying to communicate a need. For more information see factsheet 509, Dementia and aggressive behaviour.
  • Repetition – the person may repeat certain behaviours (for example, carrying out the same activity or making the same gesture over and over). This may be because they feel anxious or want comfort. Their natural interaction with their environment may have been disrupted (for example by memory loss) and the behaviour is a way to make sense of what is going on. It can help to look for meaning behind the behaviour and try to remain calm and patient.
  • Hallucinations and delusions – some people with dementia experience hallucinations, in which they see, hear, smell, taste or feel things that are not really there. However, sometimes the person may not be hallucinating but mistaking what they have seen for something else (for example, they may see a dark rug and think it is a hole in the ground). Others may develop delusions, where they strongly believe things that aren’t based on reality but feel real to them (for example, they may be convinced that someone is stealing from them). Talking calmly to the person, offering reassurance and meaningful activity (such as going for a walk or doing something around the house) can help. If you think the person is experiencing hallucinations or delusions see the GP. For more information see factsheet 527, Sight, perception and hallucinations in dementia.
  • Restlessness –many people with dementia become restless and may fidget or pace up and down. This could be for a range of reasons such as pain or discomfort, needing the toilet, a need for more physical activity or problems with their environment (for example if they are just sat in the same place with no stimulation for much of the day). It may also be because the person used to move around a lot as part of their job. It may help to encourage exercise (such as going for a walk every day) or meaningful activity including activities related to past roles, interests and hobbies, as well as new interests.

    The person may move their hands much more often. They may constantly wring their hands, pull at their clothes, tap or fidget, or touch themselves inappropriately in public. This can be a sign of a need – for example, the person may pull at their clothes because they are too hot or need the toilet. A rummage box, containing objects related to the person’s past such as pictures, jewellery or souvenirs, may help as it gives the person an opportunity for moving their hands.

Ways to manage changes in behaviour: tips for carers

The reasons for these types of behaviour may not always be clear. They may be due to, or a combination of, difficulties caused by dementia (such as orientation problems), mental and physical health, habits, personality, interactions with others and the environment. Try and understand what may be causing the person’s behaviour, and think about whether they have any unmet needs.

  • Ensure that any glasses or hearing aids are clean and functioning properly. Arrange regular sight and hearing checks.
  • Check whether the person’s medication is appropriate or whether they might be ill or in pain (see ‘Health problems’ below). A visit to the GP to rule out any physical problems is a good idea.
  • Check that they are not being disturbed by too many people, too much activity, loud noises, sudden movements or an uncomfortable environment (for example, one that is too hot or too bright).
  • Consider whether they may be bored or in need of stimulation. Engage the person in meaningful activities. Gentle activities such as a hand massage, listening to their favourite music or stroking a soft piece of fabric may help.
  • Make sure the person is comfortable – for example not in pain, too hot, cold, hungry, thirsty, or needing the toilet.

For more information see factsheet 525, Changes in behaviour.