Art & science | education
Supporting staff to care for people with dementia who experience distress reactions Admiral nurses are helping care home staff to understand residents’ behaviour and adopt a relationship-centred culture, say Victoria Elliot and colleagues Correspondence [email protected] Victoria Elliot is principal care consultant (research and innovation), The Orders of St John Care Trust, Wellingore, Lincolnshire Angelena Williams is lead My Home Life Admiral nurse, The Orders of St John Care Trust, Witney, Oxfordshire Julienne Meyer is professor of nursing: care for older people and executive director, My Home Life programme, City University, London Date of submission June 12 2014 Date of acceptance July 23 2014 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines rcnpublishing.com/r/nop-authorguidelines
Abstract This article outlines the development of distress reaction training in a large care home charity, provided by directly employed My Home Life Admiral nurses, who are mental health nurses specialising in dementia. Reference is made to the limitations of a person-centred approach to care, and the importance of relationship-centred care, which underpins the My Home Life social movement for quality improvement in care homes. The authors argue that relationship-centred care is a more helpful approach to improve the lived experience and wellbeing of residents, relatives and staff. Potentially, it might also help to address high staff turnover in the care home sector. Keywords Admiral nurses, care homes, dementia, dementia nurse specialists, distress reactions, mental health, relationship-centred care THERE ARE around 800,000 people with dementia in the UK, a figure that is projected to increase to one million by 2021. In care homes, more than 80% of residents have dementia or significant memory problems (Alzheimer’s Society 2013). Some people with dementia experience distress reactions. These are defined as the behaviour exhibited by people who are experiencing some form of distress, whether that is physical, psychological, social or spiritual, and are unable to resolve that distress. People can communicate their distress in a variety of ways, for example, by showing anxiety,
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agitation, aggression, repetitive questioning, disruptive vocalisation, sexual inappropriateness, or resistance to care. It is estimated that up to 90% of people with a dementia may experience one or more of these symptoms at some point (Steinberg et al 2003). Historically such behaviour has been referred to as ‘challenging’. The National Institute for Health and Care Excellence/Social Care Institute for Excellence (2006) dementia guideline proposed using the term ‘behaviours that challenge’ as an example of more person-centred language. Use of the term may reduce the stigma of other labels such as ‘challenging behaviour’ and ‘behavioural and psychological symptoms in dementia’. It is interesting to note that despite efforts by these prominent national advisory bodies, the negative terminology persists in many care environments and publications. A literature search found that the term ‘challenging behaviour’ was still far more commonly used than ‘distress reaction’, ‘behaviour that challenges’ or any other more positive derivation.
Effect on staff There is a growing body of research literature from around the world citing the poor management of distress reactions in residents with a dementia in acute and care home settings (Borbasi et al 2006, Crombie et al 2008) and the resultant negative effects on the health and wellbeing of care teams and increased burnout rates (Schmidt et al 2012). In a study to identify the effect of the behavioural, psychological and NURSING OLDER PEOPLE
Nursing Older People 2014.26:22-26. Downloaded from journals.rcni.com by FLINDERS UNIVERSITY on 01/31/16. For personal use only.
functional symptoms of dementia on the burden of formal carers, Miyamoto et al (2010) identified how disruptive behaviours among residents with dementia, such as aggression, screaming and low functional levels of activities of daily living, were significantly correlated with higher formal carer burden. Isaksson (2013) found that aggressiveness and depressive behaviours caused the most distress to nursing home staff. Similarly, Lundström et al (2007) and Isaksson et al (2008) found that staff who had to cope with violent behaviour rated high on burnout. Isaksson (2013) highlighted the need for managers and supervisors to ensure staff are supported and also suggested that support may reduce sickness absence and turnover. Average staff turnover in the care home sector is reported to be just under 20% (National Care Forum 2014). It makes sense, from a financial perspective and to safeguard the wellbeing of the workforce, for employers to support care teams in understanding why people with dementia may experience distress reactions and how these can be avoided. There is also a need to provide ongoing support to care teams with what is generally recognised as ‘carer burden’. This is an important development as the needs of informal or unpaid carers have previously been recognised (The Princess Royal Trust for Carers 2011), without much attention to the needs of formal paid carers.
Managing pain Distress reactions have important implications for practice. Undetected or inadequately controlled pain is one of the main causes of distress reactions among residents with dementia. Studies suggest that 50% of older adults in the community experience pain and that this increases to 80% in care homes (Schofield 2013). In a commentary on Zwakhalen et al’s (2012) study on systematic pain assessment in nursing home residents with dementia, Cohen-Mansfield (2014) highlighted the limitations of observational scales to assess pain in this group and argued that the under detection of pain in people with dementia is common, resulting in reduced quality of life and increased behavioural problems. Schofield (2013) suggested that organisational aspects of care delivery influence the choice of pain management strategies for nurses. For example, it is more time consuming to engage a second person to check and administer a controlled drug than to dispense a non-opioid from the drug trolley. Corbett et al (2012) showed that nurses did not adequately assess pain and that NURSING OLDER PEOPLE
they lacked knowledge concerning appropriate analgesic medication. Schofield (2013) concluded that suboptimal management of pain in older patients in hospital settings could be linked to lower educational levels and inadequate staffing and that ‘even the best knowledge may not be translated into practice when there are so many competing demands on nurses’. Similarly, pain management for older adults in nursing homes also presents multifaceted challenges for healthcare practitioners and researchers. Cohen-Mansfield (2014) suggested that further studies of nurses’ pain management of individuals with dementia may benefit from employing staff mentoring and using a palliative care or a dementia specialist. All these research findings come from settings where nurses are part of the skill mix. If extrapolated to residential care homes it is easy to appreciate that care leaders, who may not have received specific education or training in relation to pain management, might benefit from the skills of dementia nurse specialists to manage the pain of distressed residents with dementia.
Role of Admiral nurse The Orders of St John Care Trust (OSJCT) is a care home charity with 70 homes, providing care for 3,500 individuals and employing approximately 4,000 mostly part-time staff. Three quarters of the homes are residential, that is, staffed solely by carers who are not registered nurses. These figures are comparable to the national picture cited by Wild (2011), who found that six out of ten people in care homes were in residential units with no on-site nursing, even though nursing needs were reported to be as high as those in nursing homes. The most common nursing support provided to OSJCT residents is from district nursing teams who visit specific residents on their caseload, most commonly to treat leg ulcers, oversee insulin therapy or to assess residents after a referral from the care team in the home or GP. Community psychiatric nurses (CPNs) visit nursing and residential care homes, albeit on a less frequent basis and usually as the result of a crisis referral. In 2010, OSJCT appointed an Admiral nurse (a mental health nurse specialising in dementia care)
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Art & science | education because of the limited dementia specialist nursing support available to OSJCT residential care teams and the need to champion translation of learning into practice. The charity made the appointment in collaboration with My Home Life, a social movement (www.myhomelife.org.uk) to promote quality of life in care homes. The My Home Life Admiral nurse draws on two domains of expertise: the evidence base for best practice in dementia care (Kitwood 1997) and best practice in care homes (Help the Aged et al 2006). Kitwood (1997) emphasised the importance of person-centred care, whereas Help the Aged et al (2006) emphasised relationship-centred care (Nolan et al 2006). Nolan et al (2006) suggested that to deliver individualised relationship-centred care, the needs of older people and their formal and informal carers should be considered. They highlighted the importance of helping older people and their formal and informal carers to fulfil six senses: security, belonging, continuity, purpose, achievement and significance. Nolan et al (2006) proposed that it is only when all participants in the interdependent caring relationship experience these senses that an enriched care environment results. One of the first projects undertaken by the My Home Life Admiral nurse was a review of training provision, which resulted in revision of the existing ‘challenging behaviour training’ to ‘distress reaction training’. Two of the authors (VE, AW) thought that the terminology ‘challenging behaviour’ was negative, implying that the behaviour should be controlled by carers, which was at odds with the relationship-centred care culture being promoted in the organisation. Equally importantly, the term ‘challenging behaviour’ did not help staff to understand that such behaviour can often best be understood as a form of communication based on a person’s perceived and/or actual unmet need(s).
Training The distress reaction training was developed jointly between the My Home Life Admiral nurse and the OSJCT dementia trainer. The training is still facilitated by a My Home Life Admiral nurse and dementia trainer and provided to care teams in the homes in which they work. Evaluation showed that
The facilitator illustrates how negative terminology such as ‘challenging behaviour’, ‘a double’ or ‘a feed’ dehumanises residents 24 September 2014 | Volume 26 | Number 7
this home setting more readily facilitated relevant group discussions, reflection and problem solving in relation to particular individuals in the home who were exhibiting distress reactions and who the care team were trying to support. Learning outcomes for the three-hour distress reaction training are for care teams to be able to understand and recognise a distress reaction, diagnose what might be the cause or feeling behind it, and identify ways to prevent and/or support residents with a distress reaction. The format for the training is: Introduction: At the start of the session, care teams are asked to reflect on what it might feel like to be in a busy, unfamiliar environment with strangers. The analogy of an airport is used, which many people identify with as a confined, confusing place that anyone not familiar with airports might find stressful and intimidating. These feelings may be similar to those experienced by people entering a care home for the first time, irrespective of whether they are a resident, carer or family member. Definition of distress reaction and exploration of behaviours: The definition is considered and examples of various behaviours are discussed at length with the group and their possible causes explored, to illustrate the range of factors that may be prompting any distress reaction. Exploration of culture and terminology in the care home: The culture in some homes, where care is still mainly routine-oriented and task-based is considered. Using examples taken from practice, the facilitator illustrates how negative terminology such as ‘challenging behaviour’, ‘a double’ (where residents require two people to best meet their personal care needs) or ‘a feed’ (the individual needs help at mealtimes) dehumanises residents as individuals, which conflicts with the philosophy of relationship-centred care (Nolan et al 2004). Group work and supporting documentation: The care team are given scenarios to work through in small groups. The value of working with the whole team from one home often becomes evident at this point. The behaviours of individual residents are discussed and the group can be seen working together to give meaning and relevance to the behaviours. During such discussions reference is often made to learning from individual resident life stories and the link is made by care teams to the current behaviours. Finally, supporting NURSING OLDER PEOPLE
Nursing Older People 2014.26:22-26. Downloaded from journals.rcni.com by FLINDERS UNIVERSITY on 01/31/16. For personal use only.
documentation is reviewed, including an algorithm that guides staff about follow-up care, documentation and when to make a referral to the My Home Life Admiral nurses (there are now four funded posts), CPN or GP. At one session, the authors witnessed the care team trying to find meaning behind a female resident’s behaviour. The team discussed how the resident meticulously made her bed every morning and became distressed if it was stripped by them so that the sheets could be changed. In the course of their discussions and with reference to her life story document, the care team postulated that as a result of her childhood spent in an orphanage run by a religious order, the bed being stripped may have been associated with negative repercussions for her as a child. The staff are now more considered in how they approach this activity, and will either engage her in the process or ensure that she is not in the room when the bed sheets are changed.
Evaluation The distress reaction training is evaluated on an ongoing basis by using feedback forms after each session and asking participants to share one aspect of the training they will take away and how they will put it into practice. The training session is summarised into a report by the Admiral nurse for the homes and this is then used as part of supervision and observation of practice in the workplace. Documentation and recording should also reflect what staff have learned from the training. The following qualitative comments from a service manager, subsequent to distress reaction training facilitated by the My Home Life Admiral nurse, illustrate the value of the training to care teams and service managers: ‘Yesterday I held a reflective meeting with the care team, and the result was very positive. A care leader constantly referred to your training session and informed the staff that they all should have attended, as it was very informative and rewarding. She proceeded to share some of your guidance with the staff and gave examples of what Mr X was trying to communicate through their behaviour. This had a positive impact on the team. Two other members of staff who were in the reflective meeting, who did not want to deliver his care, have now said they are willing to try and I will do some shadow visits to see how they get on.’ ‘The care team have really appreciated you being there, and the staff are recommending your training sessions, which is a very positive step.’ NURSING OLDER PEOPLE
Admiral nurses provide ongoing practical role modelling and coaching, which support the translation of learning into practice ‘The Care Quality Commission also commented on the work that you were doing with the care team, as they also informed the inspector that they found the training beneficial.’
Putting learning into practice Despite positive feedback, there is a wealth of literature highlighting the challenges of translating learning into practice, which is often compounded by the high turnover rates of staff in care homes. Nolan et al (2008) identified the barriers and facilitators to change and concluded that education was necessary for success, but that additional measures are also needed. They argued that the role and status of care homes needed to be raised, and that a relationship-centred approach to care adopted, which acknowledged the importance of attending to the needs of all those who live in, work in or visit care homes. Helping staff to reflect on their own day-to-day practice and consider what they might wish to do differently is important. In recognition of some of these factors, OSJCT care teams are also encouraged to use the Quality of Interactions Schedule (QUIS) (Dean et al 1993) to monitor the quality of social interactions between residents and care teams. QUIS helps staff to reflect on whether interaction between staff and residents is positive, neutral or negative, and findings can be used to inform goal setting and then re-auditing. To complement this work, the My Home Life Admiral nurses provide ongoing practical expert role modelling and coaching, which support the translation of learning into practice (Bradley et al 2004). In addition to the My Home Life Admiral nurses’ direct clinical role in supporting care staff and more strategic role in improving the overall culture of care and environment, anecdotal evidence suggests that it is the less tangible aspects of support that are most valued by the OSJCT care teams. For example, ‘being there’ for staff. Working alongside staff helps them to feel a sense of security, belonging, continuity, purpose, achievement and significance, which in turn, makes it easier to develop good relationships with residents and relatives. Innes et al (2006) have highlighted that managers tend to overlook the importance of relationships between carers and residents. Often carers think September 2014 | Volume 26 | Number 7 25
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Art & science | education that they receive little day-to-day support from management and do not feel valued for their work by either their managers or by society.
Conclusion This article proposes that use of the term ‘distress reaction’, rather than ‘challenging behaviour’, is more positive to help care teams understand the possible causes of such communication in residents with a dementia. It highlights the burden that distress reactions in residents with a dementia cause to formal and informal carers and the overall emotional labour of caring which is often underestimated. Furthermore, suboptimal pain management in residential care settings is identified as an often overlooked cause
of distress reactions and an area for further investigation and practice development. Focused interactive training on the causes of distress reactions is valued by care teams to help them understand these behaviours. However, the authors suggest that this training should be in the context of an enriched care environment in order to provide an appreciation of the value of relationship-centred care, as opposed to person-centred care.
Online archive For related information visit our online archive and search using the keywords.
Conflict of interest None declared
References Alzheimer’s Society (2013) Low Expectations: Attitudes on Choice, Care and Community for People with Dementia in Care Homes. www.alzheimers.org.uk/lowexpectations (Last accessed: July 28 2014.)
Dean R, Proudfoot R, Lindesay J (1993) The quality of interactions schedule (QUIS): development, reliability and use in the evaluation of two domus units. International Journal of Geriatric Psychiatry. 8, 10, 819-826.
Borbasi S, Jones J, Lockwood L et al (2006) Health professionals’ perspectives of providing care to people with dementia in the acute setting: toward better practice. Geriatric Nursing. 27, 5, 300-308.
Help the Aged, National Care Forum, National Care Homes Research and Development Forum (2006) My Home Life: Quality of Life in Care Homes. http:// myhomelife.org.uk/media/mhl_report.pdf (Last accessed: July 28 2014.)
Bradley E, Webster T, Baker D et al (2004) Translating research into practice: speeding the adoption of innovative health care programs. Issue Brief 724. The Commonwealth Fund, New York NY. Cohen-Mansfield J (2014) Even with regular use of an observational scale to assess pain among nursing home residents with dementia, pain-relieving interventions are not frequently used. Evidence-Based Nursing. 17, 1, 24-25. Corbett A, Husebo B, Malcangio M et al (2012) Assessment and treatment of pain in people with dementia. Nature Reviews. Neurology. 8, 5, 264-274. Crombie A, Boyd J, Snell T (2008) The ABC of managing behavioural and psychological symptoms of dementia. Geriaction. 26, 2, 14-24.
Innes A, Macpherson S, McCabe L (2006) Promoting Person-Centred Care at the Front Line. Joseph Rowntree Foundation, York. Isaksson U (2013) Exposure to challenging behaviour from nursing home residents is associated with reduced general health and work ability, and increased burnout reported by nurses. Evidence-Based Nursing. 16, 4, 124-125. Isaksson U, Graneheim U, Richter J et al (2008) Exposure to violence in relation to personality traits, coping abilities, and burnout among caregivers in nursing homes: a case-control study. Scandinavian Journal of Caring Sciences. 22, 4, 551-559. Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham.
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Lundström M, Graneheim U, Eisemann M (2007) Personality impact on experiences of strain among staff exposed to violence in care of people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. 4, 1, 30-39. Miyamoto Y, Tachimori H, Ito H (2010) Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatric Nursing. 31, 4, 246-253. National Care Forum (2014) Personnel Survey Report 2014. NCF, Coventry. National Institute for Health and Care Excellence/Social Care Institute for Excellence (2006) Dementia: Supporting People with Dementia and their Carers in Health and Social Care. Clinical guideline 42. NICE, London. Nolan M, Davies S, Brown J et al (2004) Beyond person-centred care: a new vision for gerontological nursing. Journal of Clinical Nursing. 13, 3a, 45-53. Nolan M, Brown J, Davies S et al (2006) The Senses Framework: Improving Care for Older People Through a Relationship-centred Approach. Getting Research into Practice (GRiP) Report No 2. University of Sheffield, Sheffield.
Nolan M, Davies S, Brown J et al (2008) The role of education and training in achieving change in care homes: a literature review. Journal of Research in Nursing. 13, 5, 411-433. Schmidt S, Dichter M, Palm R et al (2012) Distress experienced by nurses in response to the challenging behaviour of residents – evidence from German nursing homes. Journal of Clinical Nursing. 21, 21-22, 3134-3142. Schofield P (2013) Pain management in older adults. Medicine. 41, 1, 34-38. Steinberg M, Sheppard J-M, Tschanz J et al (2003) The incidence of mental and behavioral disturbances in dementia: the Cache County Study. Journal of Neuropsychiatry and Clinical Neurosciences. 15, 3, 340-345. The Princess Royal Trust for Carers (2011) Always on Call, Always Concerned, a Survey of the Experiences of Older Carers. The Princess Royal Trust for Carers, Essex. Wild D (2011) Upskill support workers to meet older people’s needs. Nursing Times. 107, 34, 13. Zwakhalen S, van’t Hof C, Hamers J (2012) Systematic pain assessment using an observational scale in nursing home residents with dementia: exploring feasibility and applied interventions. Journal of Clinical Nursing. 21, 21-22, 3009-3017.
NURSING OLDER PEOPLE
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Supporting staff to care for people with dementia who experience distress reactions Admiral nurses are helping care home staff to understand residents’ behaviour and adopt a relationship-centred culture, say Victoria Elliot and colleagues Correspondence [email protected] Victoria Elliot is principal care consultant (research and innovation), The Orders of St John Care Trust, Wellingore, Lincolnshire Angelena Williams is lead My Home Life Admiral nurse, The Orders of St John Care Trust, Witney, Oxfordshire Julienne Meyer is professor of nursing: care for older people and executive director, My Home Life programme, City University, London Date of submission June 12 2014 Date of acceptance July 23 2014 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines rcnpublishing.com/r/nop-authorguidelines
Abstract This article outlines the development of distress reaction training in a large care home charity, provided by directly employed My Home Life Admiral nurses, who are mental health nurses specialising in dementia. Reference is made to the limitations of a person-centred approach to care, and the importance of relationship-centred care, which underpins the My Home Life social movement for quality improvement in care homes. The authors argue that relationship-centred care is a more helpful approach to improve the lived experience and wellbeing of residents, relatives and staff. Potentially, it might also help to address high staff turnover in the care home sector. Keywords Admiral nurses, care homes, dementia, dementia nurse specialists, distress reactions, mental health, relationship-centred care THERE ARE around 800,000 people with dementia in the UK, a figure that is projected to increase to one million by 2021. In care homes, more than 80% of residents have dementia or significant memory problems (Alzheimer’s Society 2013). Some people with dementia experience distress reactions. These are defined as the behaviour exhibited by people who are experiencing some form of distress, whether that is physical, psychological, social or spiritual, and are unable to resolve that distress. People can communicate their distress in a variety of ways, for example, by showing anxiety,
22 September 2014 | Volume 26 | Number 7
agitation, aggression, repetitive questioning, disruptive vocalisation, sexual inappropriateness, or resistance to care. It is estimated that up to 90% of people with a dementia may experience one or more of these symptoms at some point (Steinberg et al 2003). Historically such behaviour has been referred to as ‘challenging’. The National Institute for Health and Care Excellence/Social Care Institute for Excellence (2006) dementia guideline proposed using the term ‘behaviours that challenge’ as an example of more person-centred language. Use of the term may reduce the stigma of other labels such as ‘challenging behaviour’ and ‘behavioural and psychological symptoms in dementia’. It is interesting to note that despite efforts by these prominent national advisory bodies, the negative terminology persists in many care environments and publications. A literature search found that the term ‘challenging behaviour’ was still far more commonly used than ‘distress reaction’, ‘behaviour that challenges’ or any other more positive derivation.
Effect on staff There is a growing body of research literature from around the world citing the poor management of distress reactions in residents with a dementia in acute and care home settings (Borbasi et al 2006, Crombie et al 2008) and the resultant negative effects on the health and wellbeing of care teams and increased burnout rates (Schmidt et al 2012). In a study to identify the effect of the behavioural, psychological and NURSING OLDER PEOPLE
Nursing Older People 2014.26:22-26. Downloaded from journals.rcni.com by FLINDERS UNIVERSITY on 01/31/16. For personal use only.
functional symptoms of dementia on the burden of formal carers, Miyamoto et al (2010) identified how disruptive behaviours among residents with dementia, such as aggression, screaming and low functional levels of activities of daily living, were significantly correlated with higher formal carer burden. Isaksson (2013) found that aggressiveness and depressive behaviours caused the most distress to nursing home staff. Similarly, Lundström et al (2007) and Isaksson et al (2008) found that staff who had to cope with violent behaviour rated high on burnout. Isaksson (2013) highlighted the need for managers and supervisors to ensure staff are supported and also suggested that support may reduce sickness absence and turnover. Average staff turnover in the care home sector is reported to be just under 20% (National Care Forum 2014). It makes sense, from a financial perspective and to safeguard the wellbeing of the workforce, for employers to support care teams in understanding why people with dementia may experience distress reactions and how these can be avoided. There is also a need to provide ongoing support to care teams with what is generally recognised as ‘carer burden’. This is an important development as the needs of informal or unpaid carers have previously been recognised (The Princess Royal Trust for Carers 2011), without much attention to the needs of formal paid carers.
Managing pain Distress reactions have important implications for practice. Undetected or inadequately controlled pain is one of the main causes of distress reactions among residents with dementia. Studies suggest that 50% of older adults in the community experience pain and that this increases to 80% in care homes (Schofield 2013). In a commentary on Zwakhalen et al’s (2012) study on systematic pain assessment in nursing home residents with dementia, Cohen-Mansfield (2014) highlighted the limitations of observational scales to assess pain in this group and argued that the under detection of pain in people with dementia is common, resulting in reduced quality of life and increased behavioural problems. Schofield (2013) suggested that organisational aspects of care delivery influence the choice of pain management strategies for nurses. For example, it is more time consuming to engage a second person to check and administer a controlled drug than to dispense a non-opioid from the drug trolley. Corbett et al (2012) showed that nurses did not adequately assess pain and that NURSING OLDER PEOPLE
they lacked knowledge concerning appropriate analgesic medication. Schofield (2013) concluded that suboptimal management of pain in older patients in hospital settings could be linked to lower educational levels and inadequate staffing and that ‘even the best knowledge may not be translated into practice when there are so many competing demands on nurses’. Similarly, pain management for older adults in nursing homes also presents multifaceted challenges for healthcare practitioners and researchers. Cohen-Mansfield (2014) suggested that further studies of nurses’ pain management of individuals with dementia may benefit from employing staff mentoring and using a palliative care or a dementia specialist. All these research findings come from settings where nurses are part of the skill mix. If extrapolated to residential care homes it is easy to appreciate that care leaders, who may not have received specific education or training in relation to pain management, might benefit from the skills of dementia nurse specialists to manage the pain of distressed residents with dementia.
Role of Admiral nurse The Orders of St John Care Trust (OSJCT) is a care home charity with 70 homes, providing care for 3,500 individuals and employing approximately 4,000 mostly part-time staff. Three quarters of the homes are residential, that is, staffed solely by carers who are not registered nurses. These figures are comparable to the national picture cited by Wild (2011), who found that six out of ten people in care homes were in residential units with no on-site nursing, even though nursing needs were reported to be as high as those in nursing homes. The most common nursing support provided to OSJCT residents is from district nursing teams who visit specific residents on their caseload, most commonly to treat leg ulcers, oversee insulin therapy or to assess residents after a referral from the care team in the home or GP. Community psychiatric nurses (CPNs) visit nursing and residential care homes, albeit on a less frequent basis and usually as the result of a crisis referral. In 2010, OSJCT appointed an Admiral nurse (a mental health nurse specialising in dementia care)
Disruptive behaviours among residents with dementia were significantly correlated with higher formal carer burden September 2014 | Volume 26 | Number 7 23
Nursing Older People 2014.26:22-26. Downloaded from journals.rcni.com by FLINDERS UNIVERSITY on 01/31/16. For personal use only.
Art & science | education because of the limited dementia specialist nursing support available to OSJCT residential care teams and the need to champion translation of learning into practice. The charity made the appointment in collaboration with My Home Life, a social movement (www.myhomelife.org.uk) to promote quality of life in care homes. The My Home Life Admiral nurse draws on two domains of expertise: the evidence base for best practice in dementia care (Kitwood 1997) and best practice in care homes (Help the Aged et al 2006). Kitwood (1997) emphasised the importance of person-centred care, whereas Help the Aged et al (2006) emphasised relationship-centred care (Nolan et al 2006). Nolan et al (2006) suggested that to deliver individualised relationship-centred care, the needs of older people and their formal and informal carers should be considered. They highlighted the importance of helping older people and their formal and informal carers to fulfil six senses: security, belonging, continuity, purpose, achievement and significance. Nolan et al (2006) proposed that it is only when all participants in the interdependent caring relationship experience these senses that an enriched care environment results. One of the first projects undertaken by the My Home Life Admiral nurse was a review of training provision, which resulted in revision of the existing ‘challenging behaviour training’ to ‘distress reaction training’. Two of the authors (VE, AW) thought that the terminology ‘challenging behaviour’ was negative, implying that the behaviour should be controlled by carers, which was at odds with the relationship-centred care culture being promoted in the organisation. Equally importantly, the term ‘challenging behaviour’ did not help staff to understand that such behaviour can often best be understood as a form of communication based on a person’s perceived and/or actual unmet need(s).
Training The distress reaction training was developed jointly between the My Home Life Admiral nurse and the OSJCT dementia trainer. The training is still facilitated by a My Home Life Admiral nurse and dementia trainer and provided to care teams in the homes in which they work. Evaluation showed that
The facilitator illustrates how negative terminology such as ‘challenging behaviour’, ‘a double’ or ‘a feed’ dehumanises residents 24 September 2014 | Volume 26 | Number 7
this home setting more readily facilitated relevant group discussions, reflection and problem solving in relation to particular individuals in the home who were exhibiting distress reactions and who the care team were trying to support. Learning outcomes for the three-hour distress reaction training are for care teams to be able to understand and recognise a distress reaction, diagnose what might be the cause or feeling behind it, and identify ways to prevent and/or support residents with a distress reaction. The format for the training is: Introduction: At the start of the session, care teams are asked to reflect on what it might feel like to be in a busy, unfamiliar environment with strangers. The analogy of an airport is used, which many people identify with as a confined, confusing place that anyone not familiar with airports might find stressful and intimidating. These feelings may be similar to those experienced by people entering a care home for the first time, irrespective of whether they are a resident, carer or family member. Definition of distress reaction and exploration of behaviours: The definition is considered and examples of various behaviours are discussed at length with the group and their possible causes explored, to illustrate the range of factors that may be prompting any distress reaction. Exploration of culture and terminology in the care home: The culture in some homes, where care is still mainly routine-oriented and task-based is considered. Using examples taken from practice, the facilitator illustrates how negative terminology such as ‘challenging behaviour’, ‘a double’ (where residents require two people to best meet their personal care needs) or ‘a feed’ (the individual needs help at mealtimes) dehumanises residents as individuals, which conflicts with the philosophy of relationship-centred care (Nolan et al 2004). Group work and supporting documentation: The care team are given scenarios to work through in small groups. The value of working with the whole team from one home often becomes evident at this point. The behaviours of individual residents are discussed and the group can be seen working together to give meaning and relevance to the behaviours. During such discussions reference is often made to learning from individual resident life stories and the link is made by care teams to the current behaviours. Finally, supporting NURSING OLDER PEOPLE
Nursing Older People 2014.26:22-26. Downloaded from journals.rcni.com by FLINDERS UNIVERSITY on 01/31/16. For personal use only.
documentation is reviewed, including an algorithm that guides staff about follow-up care, documentation and when to make a referral to the My Home Life Admiral nurses (there are now four funded posts), CPN or GP. At one session, the authors witnessed the care team trying to find meaning behind a female resident’s behaviour. The team discussed how the resident meticulously made her bed every morning and became distressed if it was stripped by them so that the sheets could be changed. In the course of their discussions and with reference to her life story document, the care team postulated that as a result of her childhood spent in an orphanage run by a religious order, the bed being stripped may have been associated with negative repercussions for her as a child. The staff are now more considered in how they approach this activity, and will either engage her in the process or ensure that she is not in the room when the bed sheets are changed.
Evaluation The distress reaction training is evaluated on an ongoing basis by using feedback forms after each session and asking participants to share one aspect of the training they will take away and how they will put it into practice. The training session is summarised into a report by the Admiral nurse for the homes and this is then used as part of supervision and observation of practice in the workplace. Documentation and recording should also reflect what staff have learned from the training. The following qualitative comments from a service manager, subsequent to distress reaction training facilitated by the My Home Life Admiral nurse, illustrate the value of the training to care teams and service managers: ‘Yesterday I held a reflective meeting with the care team, and the result was very positive. A care leader constantly referred to your training session and informed the staff that they all should have attended, as it was very informative and rewarding. She proceeded to share some of your guidance with the staff and gave examples of what Mr X was trying to communicate through their behaviour. This had a positive impact on the team. Two other members of staff who were in the reflective meeting, who did not want to deliver his care, have now said they are willing to try and I will do some shadow visits to see how they get on.’ ‘The care team have really appreciated you being there, and the staff are recommending your training sessions, which is a very positive step.’ NURSING OLDER PEOPLE
Admiral nurses provide ongoing practical role modelling and coaching, which support the translation of learning into practice ‘The Care Quality Commission also commented on the work that you were doing with the care team, as they also informed the inspector that they found the training beneficial.’
Putting learning into practice Despite positive feedback, there is a wealth of literature highlighting the challenges of translating learning into practice, which is often compounded by the high turnover rates of staff in care homes. Nolan et al (2008) identified the barriers and facilitators to change and concluded that education was necessary for success, but that additional measures are also needed. They argued that the role and status of care homes needed to be raised, and that a relationship-centred approach to care adopted, which acknowledged the importance of attending to the needs of all those who live in, work in or visit care homes. Helping staff to reflect on their own day-to-day practice and consider what they might wish to do differently is important. In recognition of some of these factors, OSJCT care teams are also encouraged to use the Quality of Interactions Schedule (QUIS) (Dean et al 1993) to monitor the quality of social interactions between residents and care teams. QUIS helps staff to reflect on whether interaction between staff and residents is positive, neutral or negative, and findings can be used to inform goal setting and then re-auditing. To complement this work, the My Home Life Admiral nurses provide ongoing practical expert role modelling and coaching, which support the translation of learning into practice (Bradley et al 2004). In addition to the My Home Life Admiral nurses’ direct clinical role in supporting care staff and more strategic role in improving the overall culture of care and environment, anecdotal evidence suggests that it is the less tangible aspects of support that are most valued by the OSJCT care teams. For example, ‘being there’ for staff. Working alongside staff helps them to feel a sense of security, belonging, continuity, purpose, achievement and significance, which in turn, makes it easier to develop good relationships with residents and relatives. Innes et al (2006) have highlighted that managers tend to overlook the importance of relationships between carers and residents. Often carers think September 2014 | Volume 26 | Number 7 25
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Art & science | education that they receive little day-to-day support from management and do not feel valued for their work by either their managers or by society.
Conclusion This article proposes that use of the term ‘distress reaction’, rather than ‘challenging behaviour’, is more positive to help care teams understand the possible causes of such communication in residents with a dementia. It highlights the burden that distress reactions in residents with a dementia cause to formal and informal carers and the overall emotional labour of caring which is often underestimated. Furthermore, suboptimal pain management in residential care settings is identified as an often overlooked cause
of distress reactions and an area for further investigation and practice development. Focused interactive training on the causes of distress reactions is valued by care teams to help them understand these behaviours. However, the authors suggest that this training should be in the context of an enriched care environment in order to provide an appreciation of the value of relationship-centred care, as opposed to person-centred care.
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Conflict of interest None declared
References Alzheimer’s Society (2013) Low Expectations: Attitudes on Choice, Care and Community for People with Dementia in Care Homes. www.alzheimers.org.uk/lowexpectations (Last accessed: July 28 2014.)
Dean R, Proudfoot R, Lindesay J (1993) The quality of interactions schedule (QUIS): development, reliability and use in the evaluation of two domus units. International Journal of Geriatric Psychiatry. 8, 10, 819-826.
Borbasi S, Jones J, Lockwood L et al (2006) Health professionals’ perspectives of providing care to people with dementia in the acute setting: toward better practice. Geriatric Nursing. 27, 5, 300-308.
Help the Aged, National Care Forum, National Care Homes Research and Development Forum (2006) My Home Life: Quality of Life in Care Homes. http:// myhomelife.org.uk/media/mhl_report.pdf (Last accessed: July 28 2014.)
Bradley E, Webster T, Baker D et al (2004) Translating research into practice: speeding the adoption of innovative health care programs. Issue Brief 724. The Commonwealth Fund, New York NY. Cohen-Mansfield J (2014) Even with regular use of an observational scale to assess pain among nursing home residents with dementia, pain-relieving interventions are not frequently used. Evidence-Based Nursing. 17, 1, 24-25. Corbett A, Husebo B, Malcangio M et al (2012) Assessment and treatment of pain in people with dementia. Nature Reviews. Neurology. 8, 5, 264-274. Crombie A, Boyd J, Snell T (2008) The ABC of managing behavioural and psychological symptoms of dementia. Geriaction. 26, 2, 14-24.
Innes A, Macpherson S, McCabe L (2006) Promoting Person-Centred Care at the Front Line. Joseph Rowntree Foundation, York. Isaksson U (2013) Exposure to challenging behaviour from nursing home residents is associated with reduced general health and work ability, and increased burnout reported by nurses. Evidence-Based Nursing. 16, 4, 124-125. Isaksson U, Graneheim U, Richter J et al (2008) Exposure to violence in relation to personality traits, coping abilities, and burnout among caregivers in nursing homes: a case-control study. Scandinavian Journal of Caring Sciences. 22, 4, 551-559. Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham.
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Lundström M, Graneheim U, Eisemann M (2007) Personality impact on experiences of strain among staff exposed to violence in care of people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. 4, 1, 30-39. Miyamoto Y, Tachimori H, Ito H (2010) Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living. Geriatric Nursing. 31, 4, 246-253. National Care Forum (2014) Personnel Survey Report 2014. NCF, Coventry. National Institute for Health and Care Excellence/Social Care Institute for Excellence (2006) Dementia: Supporting People with Dementia and their Carers in Health and Social Care. Clinical guideline 42. NICE, London. Nolan M, Davies S, Brown J et al (2004) Beyond person-centred care: a new vision for gerontological nursing. Journal of Clinical Nursing. 13, 3a, 45-53. Nolan M, Brown J, Davies S et al (2006) The Senses Framework: Improving Care for Older People Through a Relationship-centred Approach. Getting Research into Practice (GRiP) Report No 2. University of Sheffield, Sheffield.
Nolan M, Davies S, Brown J et al (2008) The role of education and training in achieving change in care homes: a literature review. Journal of Research in Nursing. 13, 5, 411-433. Schmidt S, Dichter M, Palm R et al (2012) Distress experienced by nurses in response to the challenging behaviour of residents – evidence from German nursing homes. Journal of Clinical Nursing. 21, 21-22, 3134-3142. Schofield P (2013) Pain management in older adults. Medicine. 41, 1, 34-38. Steinberg M, Sheppard J-M, Tschanz J et al (2003) The incidence of mental and behavioral disturbances in dementia: the Cache County Study. Journal of Neuropsychiatry and Clinical Neurosciences. 15, 3, 340-345. The Princess Royal Trust for Carers (2011) Always on Call, Always Concerned, a Survey of the Experiences of Older Carers. The Princess Royal Trust for Carers, Essex. Wild D (2011) Upskill support workers to meet older people’s needs. Nursing Times. 107, 34, 13. Zwakhalen S, van’t Hof C, Hamers J (2012) Systematic pain assessment using an observational scale in nursing home residents with dementia: exploring feasibility and applied interventions. Journal of Clinical Nursing. 21, 21-22, 3009-3017.
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