LEARNING OBJECTIVES

After reading this article you will be able to:

• • understand the complexities associated with the treatment of behaviours that challenge in adults with intellectual disabilities

• • consider the relative importance of non-pharmacological approaches to the management of behaviours that challenge in adults with intellectual disabilities

• • describe a stepped and structured approach to the management of behaviours that challenge in this population.

Behaviours that challenge (challenging behaviour) are a significant clinical problem in the field of intellectual disabilities. Prevalence rates indicate their presence in almost a fifth of people with intellectual disabilities and that different types of such behaviour often coexist, for example aggression towards others together with self-injury or stereotypy (Crocker Reference Crocker, Mercier and Lachapelle2006; Bowring Reference Bowring, Totsika and Hastings2017). The most common definition identifies the behaviour as challenging to those who support or come into contact with the individual and recognises that it may be a means of communicating unmet need and can result from an interaction between factors that are intrinsic and extrinsic to the individual, the latter including systems of provision of care (Emerson Reference Emerson, Kiernan and Alborz2001).

Risk factors associated with the display of behaviours that challenge include severe intellectual disability, autism, communication deficits, demographics such as male gender, and physical conditions such as epilepsy. Severe intellectual disability is mostly associated with self-injury and stereotypies, whereas male gender is mostly associated with outwardly directed aggression (Crocker Reference Crocker, Prokic and Morin2014; Visser Reference Visser, Berger and van Schrojenstein Lantman-De Valk2015).

People with intellectual disabilities who display challenging behaviour suffer a number of poor outcomes, including physical health problems, increased risk of hospital admissions and increased use of restrictive practices (Emerson Reference Emerson and Einfeld2011; Lloyd Reference Lloyd and Kennedy2014). As many as two-thirds are prescribed psychotropic medication, especially sedatives, antipsychotics and antidepressants (Hassiotis Reference Hassiotis, Poppe and Strydom2018). Prescribing rates have varied over time, with antidepressants currently being the most prescribed psychotropic although it is unclear whether this is for their primary indication of treating affective disorders (Sheehan Reference Sheehan, Hassiotis and Walters2015; Branford Reference Branford and Shankar2022). Despite evidence that pharmacological interventions on their own may do little to reduce behaviours that challenge, they are often seen as the first or necessary option in cases of elevated risk during a crisis and are commonly prescribed for the management of irritability, hyperactivity or aggression in autism spectrum disorders in children (McQuire Reference McQuire, Hassiotis and Harrison2015). The evidence in adults is equivocal, mainly due to the lack of good-quality randomised controlled trials of pharmacological treatments. In the UK, many parents of people with intellectual disabilities, along with clinicians and public bodies, have been advocating for reducing the use of psychotropic medication for challenging behaviour through national initiatives such as audits of prescribing practices and the STOMP–STAMP campaign (‘stopping the over-medication of people with a learning disability, autism or both’ and ‘supporting treatment and appropriate medication in paediatrics’; NHS England 2019). It is recognised that medication side-effects and the multimorbidity and polypharmacy that is often seen in vulnerable populations such as people with intellectual disabilities can be detrimental to their overall health and well-being and that non-pharmacological approaches must be made available. To address this global concern and to optimise psychotropic prescribing, professionals, academics and experts by experience have produced clinical guidelines aimed at clinicians and oversight organisations to ensure high care standards in this area (Colwill Reference Colwill, Golparvar and Clarke2019; National Centre for START Services Reference National Centre2020).

The National Institute for Health and Care Excellence (NICE) in England, and similar organisations in other countries, have produced guidelines to support the assessment and management of challenging behaviours in both residential and community settings, with an emphasis on psychosocial approaches. NICE guideline NG11 (NICE 2015a) includes specific recommendations about the structure of care to be delivered to people with intellectual disabilities and promotes a holistic understanding of behaviours that challenge. The guideline makes specific mention of functional assessment of behaviour, preventive strategies, interventions for family carers and the use of behaviour support plans. For adults, there is special reference to interventions based on behavioural management and to cognitive–behavioural therapy (CBT) for anger management. Other modalities include provision of structured daytime activities and sensory interventions (it is important to establish the person's sensory profile before offering sensory interventions). The guideline also cautiously suggests that medication, if needed, should not be used exclusively but in combination with psychological approaches and that it should be reviewed within 6 weeks of treatment commencing. Quality standard QS101 (NICE 2015b) identifies 12 quality standards (statements) that refer to person- and service-related care elements. These statements are developed in such a way as to allow the measurement of progress against the standard, for example through audit.

One of the principal challenges in developing the NICE guideline was the lack of high-quality randomised controlled trials that could inform the recommendations on which psychological interventions to use, especially in adults. In the intervening years, there has not only been an increase in the number of randomised controlled trials of psychosocial (also called complex: Skivington Reference Skivington, Matthews and Simpson2021) interventions for behaviours that challenge but there has also begun a debate about the need for increasing the range of approaches to incorporate current understanding of the multiple underpinning aetiologies of such behaviours, which range from neurocognitive to environmental to emotional to whole systems. Thus, single interventions may be less effective in the face of multiple interactions and comorbidities in this population. As Woodcock & Blackwell (Reference Woodcock and Blackwell2020) argue ‘existing approaches have not provided the whole solution for everyone’.

Assessment and formulation

Identifying the cause behind a display of challenging behaviour can be difficult as the clinician must establish a change from the person's usual behaviour and often can only rely on carers’ reports, which can be inconsistent. Furthermore, presentations of mental illness may be atypical, especially in adults with more severe intellectual disabilities, and therefore an accurate description of sustained changes in sleep or appetite (indicating at least moderate depression) may not be available. Research in other mental disorders (e.g. dementia) has identified several frameworks that may be used to provide a holistic conceptualisation of behaviours that challenge: for example, the ‘unmet needs’ framework (Cohen-Mansfield Reference Cohen-Mansfield2013) theorises that the person is trying to communicate a need or a distressed emotional state. Unfortunately, diagnostic overshadowing, whereby behaviour is attributed solely to the intellectual disability rather than to a treatable cause, still occurs. This can lead to delayed diagnosis of an underlying physical or mental health condition and, on occasion, to death (Ali Reference Ali and Hassiotis2008).

Stepped care

Taking together the existing literature, we argue that current stepped-care models can foster inconsistency in practice which has consequences for the care of people with intellectual disabilities. We propose that a revised paradigm of the care pathway for the assessment and management of behaviours that challenge may avoid some of the limitations of the models currently in use. Although obtaining in-depth information about a person is an important step in the care pathway, it must be balanced with the provision of actions and strategies that will ultimately demonstrate improved outcomes.

The assessment of a person with an intellectual disability who displays behaviours that challenge has two objectives: first, to help the person and/or family or direct care staff to cope with the behaviour; and second, to replace the challenging behaviour with prosocial behaviour via the delivery of non-pharmacological interventions (Hastings Reference Hastings2010).

Stepped care is a useful structured way in which to tailor formulations and hence interventions to the efficient management of the presenting complaint. Multidisciplinary team formulations utilising a biopsychosocial approach usually require skilled practitioners to construct and implement them. Therefore, it stands to reason that there should be a tiered route to these more intensive supports, depending on the nature and severity of the presentation. Furthermore, such an approach is arguably more helpful in the case of a disorder that remits and relapses over time.

The stepped-care model

Figure 1 outlines our proposed stepped-care model for the assessment and management of challenging behaviour. As indicated by the double headed arrow, the model may not function in an entirely linear way and individuals with complex presentations may go up or down the steps and even skip steps. Behaviours that challenge can become chronic if not addressed effectively and efficiently. Therefore, if there is no response at lower stages in the model, it is important to move up to the next stage.

FIG 1 A stepped-care approach for managing behaviours that challenge. MDT, multidisciplinary team.

Step 1

Behaviours that pose very low risk of harm to the person or others (including to physical health and general well-being) may require little or no action from family carers or direct care staff. Such behaviours could be tolerated while various factors that might precipitate their onset are explored. Common problems that should be excluded early on include pain, side-effects of medication, pre-existing or emerging mental illness, constipation and delirium. It is advisable for direct care staff or family carers to raise concerns with the health teams the person is registered with, who will advise on next steps and facilitate, if needed, contact with a general practitioner (GP) for screening or review.

After any immediate concerns have been addressed, it is important to use low-intensity interventions such as functional assessment to understand the reasons for the behaviour. Functional assessment of challenging behaviour is used with many populations, including those without intellectual disabilities, to identify the cause of the behaviour and develop hypotheses that are then tested to find a solution. It comprises the collection of data from direct observations of the individual and from carers, followed by functional analysis. The latter assumes that the behaviour has one of four functions: to gain attention from a social or care network; to escape/avoid a situation, person or activity; to obtain/achieve a preferred object or activity; or to fulfil a sensory need (Cooper Reference Cooper, Heron and Heward2014).

Non-specialist health professionals can be trained to carry out these assessments with a view to developing a positive behaviour support (PBS) plan that guides carers to focus on areas of change which are likely to improve communication between family, the person, care staff and professionals. This may include development of joint understanding of the person's preferences and personal history, improvements in the physical environment, finding new occupational opportunities and anticipation of times when behaviours that challenge may be more likely to occur, such as when personal care is being given.

The well-being and resilience of family carers and direct care staff should also be addressed, with the attention on gradually building competencies that aid both the management (reactive) and prevention of behaviours that challenge. Competencies must include the use of basic de-escalation skills and the assessment of triggers, especially for aggressive behaviour. Basic de-escalation skills may overlap with, and can be supplemented by, distraction or delaying techniques depending on the level of the person's intellectual disability. In many cases, this may be enough to resolve an episode (Inglis Reference Inglis and Clifton2013). Tools to help anticipate and plan for managing risk due to aggressive behaviour have been tested in mental health facilities and also in community settings and emergency departments (Hassiotis Reference Hassiotis, Almvik and Fluttert2022).

Step 2

If those initial strategies do not reduce or eliminate the behaviour or risk is increasing, the next step is to turn to manualised interventions that are carried out by trained clinicians. A number of interventions have been adapted or developed for behaviours that challenge in people with intellectual disabilities (Box 1). These range from the more common therapies such as CBT and mindfulness to intensive interventions to enhance communication in people with more severe cognitive limitations. More recently, there has been interest in the utilisation of eye-movement desensitisation and reprocessing (EMDR) in the treatment of challenging behaviours in adults with intellectual disabilities who have experienced trauma (Karatzias Reference Karatzias, Brown and Taggart2019). These interventions, when available, are usually delivered by professionals from specialist community intellectual disability services or mental health services through locally agreed clinical pathways such as NHS England's Improving Access to Psychological Therapies programme. This step also includes various evidence-based approaches along the biopsychosocial spectrum, such as improving physical health, exercise and activity regimes, social interaction and the use of regular systematic medication reviews to optimise prescription and administration of medication (National Institute for Health and Care Research 2020).

BOX 1 Single interventions for behaviours that challenge in adults with intellectual disabilities

• • Group cognitive–behavioural therapy (CBT) for anger management (Willner Reference Willner, Rose and Jahoda2013)^a

• • Dialectical behaviour therapy (Sakdalan Reference Sakdalan, Shaw and Collier2010)

• • Mindfulness-informed approaches (Griffith Reference Griffith, Jones and Hastings2016), including hybrid interventions such as mindfulness-based CBT (Singh Reference Singh, Lancioni and Winton2008) and mindfulness-based positive behaviour support (Singh Reference Singh, Lancioni and Karazsia2019)

• • Who's Challenging Who? (Hastings Reference Hastings, Gillespie and Flynn2018)^a

• • Steps to effective problem-solving (STEPS) (Ailey Reference Ailey, Miller and Paun2018)^a

• • Staff training in positive behaviour support (Hassiotis Reference Hassiotis, Poppe and Strydom2018; McGill Reference McGill, Vanono and Clover2018)^a

• • Eye-movement desensitisation and reprocessing (EMDR) (Karatzias Reference Karatzias, Brown and Taggart2019)

a. There is at least one adequately powered randomised controlled trial of clinical and/or cost-effectiveness

Step 3

The final step is for the most high-risk situations or individuals who have not responded to steps 1 and 2. These cases are likely to require an in-depth multidisciplinary team formulation for a more detailed understanding of the underlying problems and conceptualisation of the intervention that may be needed within a formulation-led care plan. In the most serious cases it is likely that clinicians may need to consider the option of psychiatric in-patient admission or of alternatives such as crisis team intervention or respite care.

An important part of the assessment and management of challenging behaviour is the psychological well-being of family and paid carers. There is evidence to show that family carers living with children who display behaviours that challenge can experience psychological harm (Flynn Reference Flynn, Hastings and Gillespie2018). However, the authors conclude that the evidence for the impact of particularly aggressive challenging behaviour on paid carers’ psychological well-being is equivocal, with some studies showing an association and others not. Therefore, we propose that the assessment should include a discussion of the carers’ psychological well-being and that simple advice and resources be made available where there appear to be concerns raised.