Letting go without giving up: Understanding Behaviour

Relatives may make the difficult decision to place the person with dementia in a care home because their behaviour has become too hard for the carer to cope with. But even where behaviour has not been a particular problem in the past, the move to a care home is highly likely to cause changes in the behaviour of the person and even deterioration. This section looks at some of the changes that may occur, the importance of understanding behaviours, and strategies for coping with difficult or challenging behaviour.

Regardless of a diagnosis of dementia, behaviour is an essential part of being a human being. You may have found when you were caring for your relative at home that he/she had certain behaviours that you found difficult to understand or cope with; for example 'wandering' (now more accurately described as 'walking'), or perhaps he/she became very withdrawn and difficult to communicate with or did not want to get washed or dressed.

When someone moves to a care home, these behaviours will continue and, because of the unfamiliar faces and surroundings, may be more difficult for care home staff to deal with. Alternatively, after admission your relative may start to show types of behaviour that are a challenge either to staff or to other residents.

It is important that you do not feel responsible or guilty if there are problems with your relative's behaviour. You can, however, make an important contribution to helping the care home staff to manage any challenging behaviours by:

• understanding that behaviours for someone with dementia are a way of communicating, when speech is difficult and the dementia is clouding how the person thinks – exhibiting a behaviour is a way of being heard
• providing the home with as much background information as possible – it may give the key to the behaviour
• encouraging the staff to look at the behaviour and make an informed decision as to whether they need to try to change or control the behaviour – it may not be necessary
• remembering that some behaviours caused by the disease process may never be understood or modified but how the illness affects the person will eventually change and, with it, the person's behaviour.

Remember that care home staff go home at the end of the day and there is a team of people involved which makes it easier for them to keep on caring, even when they are faced with challenging behaviour.

There's a whole team here – you had to do it on your own.

Understanding

Understanding the person with dementia and adapting the environment or care practice is needed to better meet the individual's needs rather than using restraint or medication to control the behaviour.

A good balance needs to be struck between protecting residents and the gains in quality of life that can be achieved by taking some risks for example in relation to walking

Factors to consider:

• environment - is it too noisy, too hot, too cold?
• physical - can he/she see and hear OK? Does he/she need to go to the toilet?
• physical illness - is the person in pain but unable to tell you? Does he/she have an infection?
• depression will affect behaviour, particularly if the person is grieving at the loss of his or her former home and way of life
• medication – this usually takes the form of some kind of sedative but should only be considered as a last resort.

Relatives can be a valuable resource in understanding the behaviour of the person with dementia. Your experience and knowledge of the person may help explain why the person seems anxious or has reacted badly to a particular situation. People who constantly try to leave the home or get agitated at particular times of the day may be recalling something from their earlier life when they went to work at a particular time or left home to collect the children from school.

People whose first language was not English may revert to their first language as their dementia develops. Where staff are unable to communicate, relatives may be able to talk to the person on the phone to determine what is causing a problem. People who are resistant to eating may be persuaded to eat when helped by a relative they know and trust.

Care home staff should consider using the equivalent of a "pain ladder" in determining what steps should be taken in managing challenging behaviour and investigate what is the appropriate response and tactics to use before trying medication?

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Letting go without giving up: continuing to care for the person with dementia