Understanding Behaviour in Dementia that Challenges. Ian Andrew James

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Understanding Behaviour in Dementia that Challenges - Ian Andrew James

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often reflect some form of need that is either driven by a belief (e.g. the person thinks she needs to collect her children from school) or is related to distress (e.g. signalling or coping with discomfort/boredom).

      •BCs have multiple causes, and the neurological impairment associated with dementia is just one of the numerous factors.

      •Categorisation systems have been developed in order to group similar forms of behaviour into meaningful units. These groupings have formed the basis of treatment strategies.

      •Owing to the complexities involved in treating chronic BCs, treatment protocols are useful management guides. The protocol developed by the Newcastle Challenging Behaviour Team (NCBT, i.e. the team I lead) is presented as an illustration.

      NATURE OF BC

      Cohen-Mansfield (2001) suggests that BC in dementia often reflect an attempt by a person to signal a need that is currently not being met (e.g. to indicate hunger; to gain relief from pain or boredom, etc.), or an effort by an individual to get his needs met directly (e.g. leave a building when he believes he must go to work or collect children from school), or as a sign of frustration (e.g. feeling angry at being told he is not allowed to exit a building). In all of these situations, the actions are attempts by the individual to enhance and maintain his sense of well-being or ease distress.

      Behaviours are labelled as challenging when they are perceived to be negative in some way for either the perpetrator, or those impacted on by the actions. Indeed, in some circumstances the actor may be unaware that his actions are troublesome. For example, a person’s habit of urinating in the corridor may be more problematic for his carers than for him. For an action to be perceived as challenging a threshold needs to be passed, and this requires a judgement by a carer. As the judgements tend to be determined by the tolerance of carers and care settings, the term BC is often applied inconsistently. Indeed, what is acceptable in one environment may be seen as intolerable by carers in a different setting. Hence, the phenomenon of BC is seen as a social construct rather than a true clinical disorder that can be reliably measured.

      A comprehensive list of BC is provided in Table 1.1. As one can see, BC are not specific to dementia, rather they are actions frequently observed in the general population. Indeed, many of these acts are common occurrences outside many UK pubs and bars most weekend evenings.

Table 1.1 List of common behaviours that challenge (BCs)
Aggressive forms of BCsNon-aggressive forms of BCs
HittingKickingGrabbingPushingNippingScratchingBitingSpittingChokingHair pullingTripping someoneThrowing objectsStick proddingStabbingSwearingScreamingShoutingPhysical sexual assaultVerbal sexual advancesActs of self-harmApathyDepressionRepetitive noiseRepetitive questionsMaking strange noisesConstant requests for helpEating/drinking excessivelyOver-activityPacingGeneral agitationFollowing others/trailingInappropriate exposure of parts of bodyMasturbating in public areasUrinating in inappropriate placesSmearingHandling things inappropriatelyDismantling objectsHoarding thingsHiding itemsFalling intentionallyEating inappropriate substancesNon-complianceMisidentifying

      It is worth noting that there are many difficulties associated with defining BC in terms of behaviours. This is in part because it encourages clinicians to think of people’s difficulties in terms of their outwards signs (i.e. the actions) rather than their underlying cause(s). For example, by labelling a BC as ‘aggression’, one might be distracted from identifying its true cause which might be either pain or paranoia. Figure 1.1 is a diagram that serves to remind us about the links between behaviours and their causes.

      As can be seen from the diagram, the link between the behaviours and their causes is often via some form of belief. Such beliefs are often emotionally charged by fear, anger, pride or despair. The beliefs are also related to ‘needs’, whereby a person who believes he is still working, may have a perceived need to leave the building at 5 am to do his morning shift. The causes, and their interactions with each other, will be explored further in the next chapter.

      CATEGORISATION OF BCS

      Over the last ten years researchers have tried to identify different categories of BC. Cohen-Mansfield 2000b has produced one of the most valid and helpful ways of differentiating between them; she distinguishes between physically aggressive acts (hitting, hair pulling); physically non-aggressive (pacing, over-activity) and verbally disruptive behaviours (shouting, repetitive questioning).

      Based on these categories, Cohen-Mansfield has provided a useful framework for helping to determine causes of BCs, termed TREA (Treatment Routes for Exploring Agitation, Coleen-Mansfield 2000b). TREA is a comprehensive approach designed to help staff to identify causes and corresponding treatment plans. It uses a decision tree questionnaire format in which one arrives at the most likely cause of a problematic behaviour by assessment of the category and type of behaviour, the setting, and information about the individual (see Table 1.2). Once a cause has been hypothesised, one of a selection of treatments is chosen and carried out. If that treatment is unsuccessful, another is chosen, or a new hypothesis generated based on a better understanding of the problem.

      Cohen-Mansfield’s questions differ for each of her three categories of challenging behaviour (physical non-aggression, physical aggression, verbal disruption).

      For many years the Newcastle Challenging Behaviour Team (NCBT) used the above categorisation system to good effect. However, recently we have become interested in the role of people’s belief systems as causal features of BC (see Figure 1.1). As such, and from audits of our clinical work, we developed an alternate categorisation system (see Table 1.3). This system distinguishes between non-active and active forms of BC. The non-active types are related to apathy and depression. These are the most common categories of BC (Renauld et al. 2010; Moniz-Cook et al. 2001b). Some clinicians may not regard these behaviours as challenging, but clearly the conditions are distressing for the individuals experiencing them, and certainly undermine their levels of well-being.

Table 1.2 Some questions to be used in the case of physical non-aggressive behaviours
Question 1Question 2Potential treatment
Does the person seem upset?Is the person asking for home?Try to make the place look more like home
Is the person restless?Try to find activities which are meaningful
Is the person uncomfortable?Change position or provide other sources of comfort
Does the person have a need for self-stimulation or exercise?Are you concerned about the safety of the person?Try to use safety devices: safety alarms, large enclosed environments, change appearance of exit door
Is the person trespassing and bothering others?Try to develop a more inviting environment where the person can wander, camouflage other entrances

      In relation to the active forms of BC, we have distinguished four types. The first group can be conceptualised as reactions to stressful situations. In this group, people can feel vulnerable, think their rights are being infringed, or feel frustrated that they are not being listened to. The BCs may be caused by misinterpretations of situations due to perceptual problems, or memory deficits or psychotic features (hallucinations or delusions). Thus their reactions to these perceptions are to either seek reassurance or become aggressive.

      The second group of active BC are typified by walking and interfering activities.

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