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Informal Carers (including family, friends)

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Often people talk about “challenging behaviour of dementia”. It can give the impression that it is only because of the dementia that the person is reacting – that it is a characteristic of the individual. Persons react in relation to the resources they have, the conditions they are subject to and the way other people meet them.

From the perspective of the person with dementia, the reaction is rational. All people react inadequate if they constantly are faced with demands they cannot meet. One can look at challenging behaviour as a symptom of powerlessness. You must look behind the cause of the behaviour.

The resources the person has seem to relate to the type of the individual’s dementia, as well as the person’s history and current life situation. However, they share some common features that you, as relative, can take into consideration. Persons with dementia have a progressive brain disease and usually this means that nothing is self-evident and everything takes more energy than before the disease and some need more sleep. The cognitive capacity reduces to varying degrees. This, figuratively speaking, means the relative is driving a Ferrari cognitively speaking and the person with dementia is riding in a horse-drawn carriage. You must therefore slow down the pace, both in speech and in action so that the person does not feel “run over”.

Many persons with dementia remember poorly and if they cannot recognize the caregiver or the way the caring is performed, it is no wonder that the person will not accept getting dressed or being washed. If the relationship is not good, the person with dementia will perceive it as a violation of his/her intimal zone and react corresponding to this.

Persons with dementia are constantly experiencing loss in their lives, such as loss of function, loss of cognitive skills, process skills, communication skills and a massive role loss as they can no longer fulfil the roles they have previously held. All these losses can leave the person with a tremendous sense of powerlessness and the person will react accordingly. Powerlessness is a devastating feeling for a person and for the relatives it is good advice not to argue with the person with dementia. The person probably cannot remember what the conflict was about, but the feeling of being treated unfairly is still left in the body. For persons with dementia feelings can be seated in the body for a long time without them being able to explain specifically ´why´.

Good advices in general in care of persons with dementia:

  • If the demands are too high you must lower them
  • Slow down the pace, both in speech and in action

Reflection on the cooperation with the person with dementia

According to the person- centred care you should always see the problem from the perspective of the person with dementia

Questions for reflection:

  1. What is the problem or is it a problem?
    • Who is affected by the problem?
    • When does the problem occur?
    • What is the result of the problem?
  1. Exclude any somatic reason for the behavior
    • Does the person have cystitis or other infections?
    • Is the person dehydrated?
    • Is the person constipated?
    • Is the person in pain?
    • Or other conditions?
  1. Are the persons basic psycho- social needs met?
    • Comfort – Does the person feel trust in others?
    • Attachment – Does the person feel secure and included?
    • Inclusion – Is the person involved in the lives of others in a positive way?
    • Occupation – Is the person involved in the processes of everyday life or is she bored?
    • Identity – is the person taken serious as a person. Does the staff know his/her story?
  1. Do we understand the person preconditions and respect them?
    • Can the person live up to the demands he/she is faced with?
    • Are the senses of the person sufficiently stimulated or are they over-stimulated?