The aim of this assignment is to explore challenging behaviour in the person with dementia. As it is outside the scope of this assignment to explore all the potential reasons for challenging behaviour, the focus of this assignment will be on challenging behaviour in the context of the communication of pain, using a case study to illustrate this. This assignment will describe challenging behaviours, the behaviours associated with pain, and the management strategies employed by nursing staff, using a person-centred approach to care.
Finally, ways of improving the care provided will be explored and recommendations made. The rationale for choosing to discuss this issue is that I currently work as a staff nurse on an organic assessment ward, and am frequently involved in caring for people with dementia who present with challenging behaviours that are difficult to manage in the community setting. There are currently 750,000 people with dementia in the UK. As the UK’s population grows, there will be substantial increases, and it is estimated that there will be 940,000 people with dementia by 2021, rising to over 1. million by 2051. Alzheimer’s disease is the most common form of dementia (Alzheimer’s Society, 2010). Gogia and Rastogi (2009) describe Alzheimer’s disease as a progressive illness, where there is a decline in almost all functions, including memory, movement, language and communication skills, behaviour, judgement and abstract reasoning, and the ability to carry out activities of daily living, although the manifestation of these symptoms varies from person to person.
As Pelletier and Landreville (2007) highlight, the majority of people with dementia exhibit behavioural and psychological symptoms, including increased agitation and aggression, which can be distressing for the individual, be difficult for caregivers to manage, and lead to institutionalisation. The case study I have chosen to use for this assignment relates to Ruth (name changed for reasons of confidentiality), a 79 year old lady with a diagnosis of Alzheimer’s disease of 6 years duration.
Ruth was born locally and lived locally throughout her adult life. She worked for many years in a responsible job in the shipyard offices. Ruth was married and has two daughters. Her husband of 45 years died 10 years ago. Ruth was diagnosed with breast cancer 8 years ago, and underwent surgery for a mastectomy, followed by radiotherapy treatment. Ruth was admitted to the organic assessment ward from a care home following a period of disruptive and aggressive behaviour, which proved difficult to manage in the community setting.
The Royal College of Psychiatrists (2007, p. 14) define challenging behaviour as “behaviour that is of such an intensity, frequency or duration as to threaten the quality of life and / or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion. ” Killick and Allan (2001, p. 59) suggest that challenging behaviour refers to “the sorts of things people do which others find unwelcome or even offensive. ”
Challenging behaviour includes shouting, screaming, repetitive speech, restlessness, pacing, wandering, agitation, aggression, and behaviours inappropriate to social norms (Andrews, 2006; Cohen-Mansfield, 2000), and Brooker (2007) includes heightened distress, anxiety, inappropriate sexual behaviour, low mood, and withdrawal. Killick and Allan (2001) identify that the term challenging behaviour has replaced more negative terms such as problem behaviour or disruptive behaviour, however it continues to have a negative bias.
Cohen-Mansfield (2000) points out that problem behaviours are defined as such by those who perceive them to be inappropriate, and Cunningham (2006) suggests that patients with dementia whose behaviour interferes with ward routines can be regarded as disruptive, aggressive or difficult, which may undermine attempts to establish the underlying cause of the behaviour or identify solutions. On admission to the ward Ruth presented with significant memory loss and confusion, communication difficulties, a deterioration in her self-care skills, and a loss of impulse control.
She exhibited frequent episodes of increased agitation of rapid escalation, with verbal and physical aggression, restlessness, disruptive and destructive behaviours evident. She also expressed beliefs that staff were keeping her against her will and were attempting to poison her, making frequent references to contacting the police. Ruth’s presentation was discussed in the initial multidisciplinary team meeting, which took place within the first week of her admission, and was expressed in terms of Ruth’s paranoid ideas and delusional beliefs.
Gudgeon et al (2007) identify that the term challenging behaviour is often used interchangeably with the behavioural and psychological symptoms of dementia (BPSD), which suggests that challenging behaviour is linked to the disease process rather than any other cause. Consequently, as highlighted by McAuliffe et al (2008), the primary treatment for Ruth’s presenting behaviours was with antipsychotic medication, which is in keeping with the medical model of dementia. Ballard and Waite (2006) report that there is no evidence to support the efficacy of antipsychotic medication for treating dementia-related psychosis and behavioural problems.
A recent study by Ballard et al (2009) indicates that there is an increased long-term risk of mortality in patients with Alzheimer’s disease who are prescribed antipsychotic medication, and Kovach et al (1999) suggest that this can mask symptoms relating to pain, delay effective treatment and affect recovery time. The National Institute for Health and Clinical Excellence (NICE) guidelines on dementia (2006) advise that antipsychotic medication should be avoided for non-cognitive symptoms of dementia or challenging behaviour unless the patient is severely distressed or there is an immediate risk of harm to themselves or others.
NICE (2006) supports the philosophy of person-centred care proposed by Kitwood (1997), where the person with dementia is seen as an individual rather than focusing on their diagnosis and behaviours, and each person’s unique qualities, abilities, interests, preferences, and needs is considered. Stokes (2000) has applied this person-centred approach to understanding challenging behaviour, which is viewed as poorly communicated need or unmet need. As Kerr and Cunningham (2004) suggest, it is difficult to respond effectively to the behaviour or responses of a person with dementia if we do not know the cause of it or how the person experiences it.
The challenge for the nursing team was, therefore, to maintain a person-centred response by identifying the underlying reasons for Ruth’s presenting behaviours, understanding the need being expressed and finding individualised ways to meet that need. One model proposed is the Newcastle Model (James and Stephenson, 2007) which is a needs led approach and provides a framework for understanding the cause of the challenging behaviour in relation to the wider context. This involves the development of formulations, an approch which Turner (2005, p. 101) highlights is “time and resource greedy. The flexibility of care proposed by using this approach can also be difficult to provide in a busy clinical setting, where there are constraints in terms of ward routines and staffing levels. For these reasons, this model is not routinely used on the ward. However, a personal profile (James and Stephenson, 2007; Stokes, 2000) was used to obtain a background history. Due to Ruth’s communication difficulties, the family completed this profile to provide a life history including details of Ruth’s likes and dislikes, favourite hobbies or pastimes, and coping style, to enable the nursing team to develop a fuller picture of Ruth.
As James and Stephenson (2007) suggest, knowledge of Ruth’s life story may help the staff to understand her current presentation and behaviour, and what she is trying to communicate. Cunningham (2006) highlights the need for nurses to recognise the early signs of distress as this can be an indicator of the development of challenging behaviour. This requires a knowledge and understanding of the person and the situations that trigger these behaviours. The nursing team introduced a behavioural approach, using ABC (antecedent, behaviour, and consequences) analysis charts (Stokes, 2000).
This involved the recording of a detailed description of each incident to determine Ruth’s experiences during each episode of challenging behaviour, and try to establish triggers for, and the frequency of, these behaviours. During the course of Ruth’s admission, as staff became more familiar with Ruth and her usual behaviour patterns, and by using the information provided by the ABC analysis charts, it became clear that she was more agitated and aggressive on interventions relating to personal care and dressing.
Ruth was also more restless in the evenings, and frequently experienced sleep disturbances and long wakeful periods during the night when she would present as tearful and distressed. Ruth’s non-verbal cues (rubbing her back, grimacing, rocking, and body stiffness) suggested she was in pain, although she was not able to articulate this due to her impaired communication skills. There was also an escalation in Ruth’s behaviour around medication times. It was at these times that Ruth expressed ideas of staff poisoning her and wanting to contact the police, and her acceptance of prescribed medication was variable.
From the information provided by Ruth’s family, it became apparent that Ruth has long held significant fears and anxieties about the cancer spreading, and regarding addiction and overdosing on medications. This is supported by Reid et al (2008) who highlight people’s anxieties surrounding the presence of uncontrolled pain being a constant reminder of their cancer, and Blake et al (2007) who suggest that a significant concern is addiction to the drugs. Ruth has, therefore, been reluctant to take medication throughout her life, and as identified by McAuliffe et al (2008) has had a stoical approach to her pain experience.
As Stokes (2000) identifies, Ruth’s behaviour at medication times, while viewed as challenging by others, was likely to be perceived by Ruth as purposeful and appropriate, and was in response to the need to remove a perceived threat. Ruth’s family were invited to the next multidisciplinary team meeting to provide a collateral history, and to identify their thoughts with regard to Ruth’s future care. The nursing team discussed their concerns regarding Ruth’s potential experience of pain.
Ruth’s family advised that Ruth had received no follow up by oncology services for a considerable period, something acknowledged by Jacobsen (2009) who identifies that on completion of their primary treatment, many patients are lost to services and receive inadequate follow up care. The consultant made a referral for a scan of Ruth’s brain and body, and on investigation Ruth was diagnosed with metastases of the spine. The Mental Capacity Act (Department for Constitutional Affairs, 2005) was used to establish Ruth’s capacity to make decisions regarding her treatment and future care.
This provides the legal framework for acting on behalf of vulnerable people who are unable to make their own decisions. Due to her illness and level of cognitive impairment, Ruth was unable to understand the information provided, use this information to make an informed decision or communicate a decision. The decision regarding Ruth’s treatment and future care was, therefore, made in her best interests and involved her daughters and the multidisciplinary team providing her care.
Kumar and Allcock (2008) suggest that older adults are more likely to experience persistent pain associated with long-term health problems. The National Service Framework for Older People (Department of Health, 2001) emphasised the importance of person-centred care and the dignity of the older person, and as Kumar and Allcock (2008) highlight, the appropriate management of pain is fundamental in maintaining the dignity and well-being of older adults. Thompsell and Jesson (2008) emphasise that effective pain management in those with dementia is dependent on the recognition that the person is in pain.
There are a number of observational changes associated with pain identified by the Royal College of Physicians, British Geriatrics Society and British Pain Society (2007, p. 3). These include autonomic changes, changes in facial expressions, changes in body movements (repetitive movements, pacing, rocking, altered gait and posture), vocalisations (moaning, screaming, verbal aggression, offensive speech), changes in activity patterns (wandering, sleep disturbances), mental state changes (confusion, irritability, distress), and behavioural changes (aggression, withdrawal, resisting).
Shega et al (2007) suggest that the management of co-morbid pain and dementia is challenging due to the possible similarities in the way they are both expressed. There are studies of people with severe cognitive impairment which highlight the possibility that neurological changes affect pain perception (Tsai and Chang, 2004), however Benedetti et al (2004) propose that pain is perceived normally, although the ability to remember, interpret, and respond to pain may be altered.
Pain assessment, therefore, is a particular challenge among older people with cognitive impairment who are often unable to articulate or convey how they feel (McAuliffe et al, 2008). As Reynolds et al (2008) point out, cognitive impairment is frequently associated with lower reports of pain and undertreatment of pain, and Thompsell and Jesson (2008) suggest that even when recognised, pain is often not effectively managed and can lead to a reduced quality of life.
Following Ruth’s diagnosis of metastases in her spine, she was prescribed an opioid based analgesic on a regular basis in liquid form in an attempt to improve her concordance. However, this was unsuccessful as Ruth frequently refused to accept this medication orally. The information provided by Ruth’s family gave the nursing team a valuable insight into Ruth’s character and values regarding prescribed medications and explained Ruth’s reaction at medication rounds in terms of her increased agitation and belief system that staff were trying to poison her.
As Thompsell and Jesson (2008) identify, it is important to give an adequate amount of analgesia to avoid breakthrough pain, and the route of administration is important. The nursing team discussed this with the medical staff and recommended the use of a patch which would last for 72 hours, and therefore would be less distressing and more effective for Ruth in view of her value system in terms of fear of addiction and overdosing on medication. Ruth was more accepting of this method of administration, and it proved more successful in terms of managing Ruth’s pain.
As Kaasalainen (2007) sugests, the communication of pain frequently relies on verbal reports, however as Cohen-Mansfield (2005) highlights, verbal or visual self-report assessments can be inappropriate for individuals with significant cognitive impairment due to increased difficulty in expressing their pain. Smith (2007) also points out that cognitive impairments can limit a person’s ability to recall the experience of pain, and difficulties with attention and concentration can reduce the ablity to participate in a pain assessment.
For people who do not have the ability to communicate pain, non-verbal or behavioural observation methods of pain assessment are useful, although these tools are limited in terms of their ability to identify pain intensity (Kaasalainen, 2007). Currently there are no formal pain assessment tools used on the ward, although the distress assessment tool (DisDAT) (Regnard et al, 2007) was implemented by nursing staff to document a wide range of signs and behaviours for Ruth, in both her content and distressed states.
As Regnard et al (2007) highlight, no single cause of distress reliably causes specific behaviours in people with cognitive impairment, therefore it is necessary to identify distress first and then identify the cause of that distress. They also suggest that existing pain tools may, in fact, be distress assessment tools. As Regnard et al (2007) point out, meaningful communication with people with communication difficulties is dependent on staff’s ability to recognise and interpret many different cues.
The level of familiarity and knowledge of a person’s usual habits has a significant impact on staff’s ability to identify subtle changes in behaviour , and to differentiate pain related behaviours from other behaviours (Cohen-Mansfield and Creedon, 2002; Kovach et al, 2000), although as McAuliffe et al (2008) acknowledge a stable workforce is required for staff to be able to work consistently with patients in order to develop this level of knowledge. During periods of increased distress, Ruth’s behaviours ranged from increased agitation and verbal and physical aggression to periods of isolation and tearfulness.
The DisDAT tool enabled staff to monitor and record changes in Ruth’s behaviour, in order to establish periods of increased distress associated with pain, and the need for as required analgesia for breakthrough pain. It was important for nursing staff to try to anticipate periods of pain fluctuation as Ruth was unable to anticipate or request analgesia due to her cognitive impairment and communication difficulties, therefore she would be less likely to receive analgesia prescribed on an as required basis (King, 2009). Ruth’s analgesia was reviewed frequently throughout her admission.
Due to changes in the route of administration of Ruth’s analgesia which resulted in the successful management of her pain and a reduction in episodes of challenging behaviour, the multidisciplinary team were able to plan for Ruth’s discharge to a nursing care placement. Nursing staff also liaised with external services, and sought the involvement of a palliative care nurse who liaised with Ruth’s GP and oncology services to re-establish links with this service to ensure Ruth’s needs were met post discharge, and to advise on Ruth’s pain management.
As Pelletier and Landreville (2007) highlight, the conflicting quality of dementia as an illness is that patients are more vulnerable to many sources of discomfort while at the same time being less able to regulate these independently or to communicate their discomfort. Older adults with dementia are more likely to experience co-morbid physical health problems, however the pain experienced by this group of people is generally under-recognised and under-treated, which can impact on their dignity and quality of life.
The challenging behaviours demonstrated by people with dementia are frequently viewed by those providing care as part of the disease process, therefore excluding other potential causes. As McAuliffe et al (2008) highlight, barriers to successful pain assessment in people with dementia include lack of recognition of pain, lack of sufficient education or training, misdiagnosis and not using assessment tools.
There should, therefore, be a training programme introduced at ward level, accessible by all staff irrespective of grade and experience to improve their knowledge base. This should address the relationship between dementia and pain, the identification of pain indicators, and how pain may manifest itself in these individuals, in terms of heightening staff awareness of pain as a possible precipitant to challenging behaviour rather than viewing all behaviours as a part of the dementia process, and the importance of timely assessment and appropriate treament.
Pain should be routinely assessed on the ward. There are a number of pain assessment tools available therefore, as a team, there is a need to identify a pain assessment tool that is valid, reliable and appropriate for the clinical setting and client group, where patients often have significant cognitive impairment and are unable to communicate or express their needs or experience of pain. An important consideration when selecting an assessment ool is the ease of use and accessibility, as the ability to recognise behavioural changes that may indicate pain extends to support workers who have the most direct contact with the patients, but the least training in this area (Horgas and Dunn, 2001). As Zwakhalen et al (2007) suggest, the availability of a clinically useful pain assessment tool has significant implications for nursing practice and patient care, in terms of improving the potential for identifying pain, therefore decreasing the risk of undertreatment.
The use of assessment tools, according to Smith (2007), also provides a more structured, focused and consistent approach given the potential for variations in assessment techniques in a busy clinical setting due to the number of different staff involved, different grades of staff, varying shift patterns, and variable knowledge base around pain and dementia. Currently, the personal profile used on the ward is completed by the support workers as close to the point of admission as possible.
While the information gathered is useful to provide background information about the patient, this is not consistently expanded upon or used to inform care planning, and is generally only re-visited at the point of discharge to provide information for the future care placement. Consideration may, therefore, be given to the use of an alternative tool, the Pool Activity Level (PAL) Instrument (Pool, 2008).
This tool uses the personal history profile to gather information about the person, identifies meaningful topics of conversation and interests, and uses the information to develop plans for activities of daily living skills and activity planning, based on the patient’s existing abilities. This tool promotes a person-centred approach to care, and also encourages a consistent approach by all staff.
From a personal perspective, the completion of this module and the use of a case study to relate theory to practice has encouraged me to reflect on my own nursing practice, and has reinforced the importance of shifting the focus of care from the presenting behaviours in the context of the diagnosis to a more individualised approach and engaging in an assessment based on person-centred care. It has also heightened my awareness of the possible underlying causes of challenging behaviours, the importance of knowing the patient and their usual patterns of behaviours, and the need to assess for he presence and intensity of pain, which is common in older adults with dementia, and which Bourgeois and Hickey (2009) advise is one of the main responsibilities of nurses.