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Understanding why a person with dementia may display distress behaviours.

Updated: a day ago


It is fully recognised in the care that there are a growing number of people who now require support in one form or another. From family carer, domiciliary care providing home care to full nursing care in a specialised care home.


As a part of this there are a growing number of people who are now being diagnosed with Dementia and this number is growing every day, putting pressure on existing services.


Department of health (2009) states “One-third of people with dementia live in care homes and at least two thirds of all people living in care homes have a form of dementia.


This state of affairs has not been planned for, either through commissioning services or through workforce planning.” Care providers are guided by the national minimum standards set by the care quality commission. National Minimum Standards (2000) states “No service user moves into the home without having had his/her needs assessed and been assured that these will be met.”


So why on occasions does it go so wrong for the individual, In an answer UNMET NEEDS, it is reasonable to expect that the pre assessment was complete, the discussions with the individual and family is correct, the care plans contain all the correct information and the care team are fully aware of the individual’s needs. NICE Guidelines (2006) states “Health and social care staff should take account of the views of carers and relatives who describe behaviour that could be in keeping with dementia.”


But we still overlook the basics, the basics that we need, the basics of physical, psychological and occupational needs that makes us an individual.


Kitwood (1997) says “Satisfaction and wellbeing will only be when we address meaningfully the needs of those with Dementia



You be the detective.


As dementia develops, it can cause behaviour changes that can be confusing, irritating or difficult for others to deal with, leaving carers, partners and family members feeling stressed, irritable or helpless.


By learning to understand the meaning behind the actions, it can be easier to stay calm and deal effectively with the challenges that arise. When this is so, it is up to you to become the DETECTIVE .


Your ability to understand and read the situation by use of good communication tools and the ability to read body language. Can help you understand and recognise the build up to the distress that the person has which is causing the behaviour being displayed.


Often we look at behaviour as a challenge rather than look at the cause of the distress, establishing why someone is distressed will help us formulate the correct response in reducing the distress the person may have. Like any good detective you are gathering the facts, assessing the information, evaluating the evidence and planning your response. You can ask some key questions to ascertain the cause of the behaviour.


Suggested questions you could ask as the detective are.

Is this a new behaviour?

Does the behaviour pose danger for the resident or others?

Whom is it really a problem for? Resident? Staff? Family?

Look at each behaviour as a separate challenge.

When did the behaviour start?


Once you establish some of the answer's you can then begin to formulate strategies in which staff can use to aid the person in reducing the stress that has caused the behaviour.



Behavioural symptoms of dementia.


Neither the person nor the behaviour is the problem – the problem is the need or feeling that the person is trying to communicate with the behaviour.


We now recognise that many of the behaviours that are displayed by people with dementia indicate that they are in some form of distress. The behaviour is an indication of discomfort, pain, anger, fear and other physical and emotional conditions.


The damage to the brain from dementia often makes it difficult for people to communicate their needs through language, so we must pay close attention to their verbal or physical behaviours to know how to help them.


For us to change the way we respond to behaviours associated with dementia, it is important to consider how we feel about these behaviours. We must be very careful that we do not label persons with dementia by their behaviours.


Labels can often reflect attitudes and can shape how we respond to people. It is not unusual to hear a resident labeled as a “wanderer” or a “hitter”. Labels can make people assume the behaviour reflects the person and fail to recognise that the person is experiencing pain, fear or some other emotional or physical problem that needs to be addressed.


Labeling people with dementia by a negative behaviour is blaming the victim. Changing our language is not easy, but it is important that we do so. We should never refer to a person as a “dementia person”, rather the person is “a person with dementia”. Don’t call a person a “screamer”, or a “hitter”. Talk about what the person is doing– “Mrs. Jones has been “wandering” and entering other resident’s rooms this afternoon.” The priority and focus should not focus on the behaviour, but on assessing and looking for the underlying cause.


Making sense of it all


The person can often display a lack of good judgement in some of the decisions that they may make. This can result in people saying and doing things that are out of character.


Generally if someone does something that irritates others or that is unacceptable, people will respond verbally or show looks or our own behaviour indicating disapproval. But when do we decide that the behaviour is unacceptable.


It would be correct to say that some or all of the behaviour’s are unacceptable. But we need to take a step backwards and focus on the whole picture.


Some questions that could be asked are,


a) Are there any Words or Behaviours, which may Impact or Harm another person that are acceptable?


b) What is the Difference between Understandable and Acceptable Behaviour?


c) When might the Behaviour be acceptable?


d) What will the person do, if we do nothing?


When we look at words or behaviours that could impact or harm another we would say that there should be none and this would be an understandable response.


When we look at and decide the difference between understandable and unacceptable, often it is difficult to see the difference until we have a fuller picture.


When might the behaviour become acceptable, is when we can see the actions and reasons that have caused the behaviour to occur.


For example;


While having a cup of tea and handing the biscuits out, our focus is taken away from the room and what the person may be doing. After passing the tea around and you are leaving the lounge you hear shouting and as you turn around you see mum hit dad. In this action we would immediately respond that the action and behaviour is unacceptable, the decision would be correct if we took time to gather the facts. Now let’s say dad had took a biscuit from the plate. In doing so the mum got upset and screamed while hitting out dad. What we saw was mumr’s behaviour not the lead up to it.


When we look at when the behaviour might be seen as acceptable, looking at the antecedent is paramount. Now that we know that dad took the biscuit off the plate belonging to mum we can begin to understand the behaviour. This is not to say that we accept that mum’s behaviour but we can now understand why she behaved in the manner she did. If we did not let mum know that we understand her behaviour and find a solution for what happened, it does two things,


1. Tells mum that her behaviour is acceptable no matter why.


2. Allows dad to continue with his behaviour too.


Solutions to preventing the behaviour arising again would be to offer dad biscuits on his own plate as we know this is the antecedent to the behaviour.


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 to no longer be able 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, confronting or challenging them may lead to an escalation of the unwanted behaviour. 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 person with dementia will be uncomfortable, but may not be able to understand the cause of the discomfort and respond appropriately. 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. Persons with dementia have a general loss of mental abilities that impacts their life and that of caregivers in many ways.


There are a number of behaviours that are common among individuals with dementia. memory problems and subtle behaviour changes are evident in early dementia, while many of the more overt behaviours occur in persons with moderate to severe cognitive impairment.


Excessive walking-


• Orbiting – this is when an individual starts at one point (such as the lounge) and returns to the same area.


• Visiting – some persons, when wandering, will tend to enter other rooms. Often because they cannot distinguish which room they are in, when all the doors are the same colour.


Rummaging & Hoarding-


Some individuals with dementia have a tendency to rummage through drawers and closets as if looking for something.

Others tend to gather up all sorts of items as if they were collectors.


Repetitive behaviours are very common in moderate and advanced dementia. These behaviours can be annoying and frustrating to caregivers.


Sometimes the individual with dementia will repeat the same behaviour over and over, such as continually washing the same dish, tapping their fingers, saying the same phrase.


Continual pacing is seen with the person walking aimlessly back and forth.


Fidgeting is also common, with individuals being in seemingly perpetual movement– twisting a piece of clothing, constantly moving in their chairs, moving their feet and so forth.


Verbal behaviours - The verbal behaviours can take many forms. Those listed are among the common non-aggressive verbal expressions. Constant repetition of the same word or phrase tends to occur in later stages of dementia.


They literally “get stuck” on a word or phrase and can’t seem to move to a different phrase or activity.


Inappropriate behaviours - Inappropriate behaviours are those behaviours that tend to make others uncomfortable.


They include such behaviours as disrobing or urinating in public, touching another person or oneself in an inappropriate area of the body.