Understanding Behaviour in Dementia that Challenges. Ian Andrew James
Thus it suggests that the management of BC should take account of the combined influences of the chemical neurological, physical changes, as well as the psychological and social features. In each of the following chapters this perspective will be illustrated and expanded upon, using case examples and research data. For example, Chapter 1 will examine the concept of BC, providing an overview of types of behaviours and categorisation systems. Chapter 2 examines the common causes of BCs, and provides examples of assessment tools. Chapters 3 and 4 describe the current treatment strategies, discussing the pharmacological and non-pharmacological approaches. Both of these approaches have been criticised because of their poor evidence bases, with particular concerns about the problematic side-effects of medication. Chapter 5 outlines a number of different conceptual models that have been developed in the field to enhance people’s understanding of dementia and BCs. By gaining better awareness, it is suggested that clinicians’ assessments and treatment strategies may be improved.
In the later chapters of the book, there will be a greater focus on practice and service issues. Chapter 6 describes the clinical approach I have developed with colleagues in Newcastle for working into 24-hour care settings. In Chapter 7 a number of case examples are presented, with comprehensive descriptions of the treatment processes.
Chapter 8 addresses the issue of service development, drawing on the recent government commissioned report ‘Time for Action’ (Banerjee 2009). In this report, that was accepted by the Minister of State, its author calls for a radical overhaul of BC services and treatment approaches; with a move from an anti-psychotic dominated mode of treatment to one that makes better use of non-pharmacological approaches. Indeed, Banerjee calls for a reduction in anti-psychotic usage of two-thirds over a three-year period, and puts forward 11 recommendations to allow this to be achieved.
RELEVANCE OF THIS BOOK
This book is timely as we start to implement the recommendations of the various national strategies. It is also relevant because there remains a great deal of confusion regarding the treatment of BC. Many psychiatrists think that they have been put in a difficult situation regarding the proposed restrictions on the use of medications, particularly the use of anti-psychotics. It is relevant to note, however, that psychiatrists continue to have a lot of faith in these drugs and are still prescribing them on a regular basis (Wood-Mitchell et al. 2008; Bishara et al. 2009). Currently, non-medical professionals may also be at a loss, because they have received little ‘quality’ guidance on what to offer as a practical alternative to drugs. Indeed, many of the non-pharmacological strategies suggested in the literature are preventative methods rather than treatment approaches. This book explores the distinction between ‘prevention’ and ‘treatment’ strategies and provides advice for dealing with BCs in their acute phases. This text also has particular relevance for those working in the private sector, describing a treatment approach designed to specifically work with residents in 24-hour care.
The book is also relevant to commissioners and government employees, particularly in light of the recent HERC (2010) publication that revealed each dementia client costs the UK economy £27,647 per year (cancer: £5999; heart disease: £3455). This figure does not include extra costs that are incurred when a client displays problematic behaviours.
It is evident that there is a need, and a desire, to improve care practices. The move away from a medical approach to BC is not new, it has been slowly happening over the last 20 years. However, the call for change has increased of late, gaining momentum owing to concerns about the use of drugs and the need to develop effective alternatives to them. In addition, and perhaps most importantly, additional impetus for change has come from our politicians and economists who seem to recognise that it is essential to plan for the future from both a financial and well-being perspective.
Chapter 1
Introduction to Behaviours that Challenge
DEFINITION
For the purposes of this book, behaviours that challenge (BC) are defined as actions that detract from the well-being of individuals due to the physical or psychological distress they cause within the settings they are performed. The individuals affected may be either the instigators of the acts or those in the immediate surroundings. Common BCs include: hitting, screaming, excessive pacing, apathy, etc. The BCs often have multiple causes (e.g. physical, mental, environmental, neurological), which are moderated by people’s emotions and beliefs. BCs are common, and generally managed well by carers, and many resolve with time. However, some problems can become chronic or risky, and on these occasions specialist assistance is required in the form of biopsychosocial approaches (i.e. medical and non-pharmacological). Such approaches require a thorough assessment of the situation, and then effective targeting of the causal factors underlying the behaviours.
The definition will be unpacked in the remainder of this chapter, and the following aspects emphasised:
•BC are problematic behaviours that cause difficulties for the person performing them, or for the setting in which they are displayed.
•What is perceived to be ‘challenging’ will differ between settings, with some onlookers being more tolerant than others. For this reason, the term ‘BC’ is viewed as a ‘social construct’.
•They 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