1.3 Professional advice regarding how to help a person with dementia

Often, people talk about “the 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. However, people react according 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 inadequately if they are constantly faced with demands they cannot meet. One can look at challenging behaviour as a symptom of powerlessness. When staff experience behaviour as challenging, they tend to see behavioural problems as if the person with the behaviour is the problem. In reality, the staff get into trouble because they do not know how to handle the behaviour. The staff and non-professionals must look behind the behaviour.

The resources the person has seems 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 staff and non-professionals 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 they got ill and, also, some need more sleep. The cognitive capacity reduces to varying degrees. This, figuratively speaking, means that the staff and non-professionals are driving a Ferrari cognitively speaking and the person with dementia is riding in a horse-drawn carriage. The staff and non-professionals must therefore slow down the pace, both in speech and in action so that the person with dementia does not feel “run over”.

Another useful consideration when working with people whose behaviour is challenging is always to prioritize the relationship before the task. 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 intimate space and react corresponding to this. If we are to follow the person-centred approach, we cannot regard the person in need of care as a task to be accomplished. There is a need for the individual to have a good relationship with the nursing staff, who later may be given the opportunity to help him/her. Creating relationships takes time and can be a lengthy process when it comes to prioritizing a pure “task solution”

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 they will react accordingly. Powerlessness is a devastating feeling for a person, whether he/she is a staff member, a nursing home resident or an elderly person with care and support in own home. Powerless staff and non-professionals are often demanding and confrontational. The staff and non-professionals then seek to try to educate and teach the person with dementia to “behave properly”. This is rarely successful because education bases on learning and dementia just means that the person is not so good at learning anymore. It can create a conflict because the person in need of care feels that the caregiver talks to him like a child. He/she has behaved properly throughout their life and they are an adult. The person probably cannot remember what the conflict is 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 advice in general in care of persons with dementia:

• If the demands are too high, the staff and nonprofessionals must lower them
• The staff must therefore slow down the pace, both in speech and in action
• The staff must prioritize the relationship before the task. No person is “a task”

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?

2. 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?

3. Are the person’s 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 seriously as a person. Do the staff know their story?

4. 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?