• Peter Gathercole

Distress Behaviour in Dementia With Coping Strategies (Part One)

Updated: Jul 26, 2020

What is it?

The term "distress behaviour" has been used to refer to the "difficult" or "problem" behaviours which may be shown by individuals. Such behaviours include aggression (e.g, hitting, kicking, biting), destruction (e.g, ripping clothes, breaking windows, throwing objects), self-injury (e.g, head banging, self-biting, skin picking), tantrums and many other behaviours (e.g. running away, eating inedible objects, rocking or other stereotyped movements). Characteristically, distress behaviour puts the safety of the person or others in some jeopardy or has a significant impact on the person's or other people's quality of life.

In general, distress behaviour is rather more common in people with dementia, though the pattern varies considerably depending on the type of behaviour being considered and the age and type of dementia of the person.

Why does it happen?

The first point to make is that there is no simple answer to this question. However it is helpful to remember, that most people without dementia display lots of distress behaviour as the disease progresses.

In general then, many cases of distress behaviour appear to be effective ways for a person with dementia to control what is going on around them. This may reflect their lack of more usual methods of control and the more unusual nature of the environments to which they are exposed.

While the above is a generally accepted account of why distress behaviour occurs we should always consider, especially if the behaviour has just arisen or worsened, the possibility that it reflects some kind of biological or emotional disturbance. People may bang their heads because their ear aches or hit out because they slept poorly the previous night. Understanding the variation in a person's behaviour that challenges is often a key to promoting positive change.

What can be done?

Unfortunately, distress behaviour is not generally like an infection which can be treated by a short-term course of antibiotics. In many cases there will be no "magic bullets", change may take some time (especially where the behaviour is well established), will almost certainly require changes in the way other people behave and may be very susceptible to relapse. Having said all this, there is a great deal that can be done to prevent and treat distress behaviour.

The goal of prevention is a worthwhile but elusive one. Where distress behaviour arises from a medical condition, a sensory impairment or similar, the more such conditions can be remedied the better. On an everyday basis, carers can try to ensure that the person has what they need when they need it - help, attention, food, drink, preferred activities and so on. It is very important, however, that people are also given the opportunities and the skills to get things for themselves or to ask for them rather than them always being available "on a plate". Without the opportunities of exerting such control, people with dementia will be in much poorer positions when they get into situations (as they inevitably will) where they are expected to fend for themselves and speak up for themselves more. One of the keys to prevention (and also to treatment) is therefore to emphasise the development of communication and independence.

If prevention has failed, early intervention is the next best thing. Staff often complain that their attempts to get help early on are met with bland reassurance rather than practical assistance. Staff should, therefore, take the person's distress behaviour seriously especially if it is of a kind not usually found in a person without a dementia. What can staff do? Getting help is obviously important but where that is not available or slow to arrive staff should consider the following actions:

  • Treat the behaviour as evidence of a previously undetected problem. Is the person in pain? Or bored? Or being asked to do things they find difficult? Or trying to "tell" you something? And so on.

  • Try to check things out for yourself. If you change something does that stop the behaviour? Can you teach the person to tell you what they want without distress behaviour?

  • Keep some sort of record of when the behaviour happens and the things you have done to try to figure out what's going on. In a year or two's time you'll find that it's very difficult to remember the details.

  • If (and only if) it is safe to do so then " ignore" the behaviour (don't comment on it, don't tell the person off, appear not to notice it) and change the situation (distract, divert) as quickly as you can. If distraction or diversion are impossible you may have to leave the person on their own but you need to be sure that the situation is safe and be able to cope with the behaviour possibly continuing for some time before it stops.

  • If it is not safe to ignore the behaviour respond as calmly and blandly as possible to prevent the person hurting themselves or others.

  • If you do have to respond, better to respond quickly than slowly - otherwise you are teaching the person to be more persistent.

  • Distress behaviour can be an emotional experience - you may feel very angry with the person or very depressed about their behaviour.

  • Don't be ashamed of this, don't bottle it up and don't take it out on others! Instead, talk about it with anyone who will listen and understand.

Points to Consider

They may display a lack of good judgment.

  • The ability to make good decisions is often affected by dementia. This can result in people saying and doing things that are out of character. It can also place them in danger, such as walking into traffic, going into extreme cold without a coat or protection, or becoming the victim of a scam artist.

They can no longer understand how to change their behaviour based on the response of others.

  • Generally, if someone does something that irritates others or that is unacceptable, people will respond verbally or show looks or behaviour indicating disapproval. Normally people can “read” the responses of others, such as a frown or look of anger, and are able to modify their behaviour if they chose. Dementia causes people lose the ability to understand the reactions of others or to respond by changing their behaviour. Scolding or showing disapproval of the behaviour of an individual with dementia will generally not change the behaviour. In fact, directly confronting the behaviour may lead to an escalation of the unwanted behaviour.

They lose the ability to interpret and communicate their feelings in the usual way.

  • Normally we can understand and respond when our body tells us we are hungry, thirsty, need to urinate, are cold or are experiencing fatigue. Dementia damages the part of the brain that helps us understand the signals we are receiving from our body. The individual with dementia will be uncomfortable but may not be able to understand the cause of the discomfort and respond appropriately.

People become more likely to do things that irritate, offend, or embarrass others.

  • As the part of the brain that controls behaviour becomes damaged by dementia, it is not uncommon for people with dementia to say and do things that are considered socially inappropriate. They lose the ability to understand the difference between behaviours that are socially OK and those that aren’t. They have lost the ability for their brain to tell them what not to do.

  • Individuals with dementia have a general loss of mental abilities that impacts their life and that of caregivers in many ways.

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