Caring for patients with dementia in the acute care setting Lesley Butcher This article highlights the vulnerability of people with dementia in the acute hospital setting, where they are more likely to experience clinical incidents such as falls, contract infections and be prescribed neuroleptic drugs. This patient group has a significantly longer length of hospital stay and higher mortality rate following discharge compared with those without dementia. As many as one third are discharged to institutionalised care. The article explores the knowledge gap concerning the complexity of caring for a person with dementia and highlights factors that can lead to staff detaching themselves from engaging in meaningful communication with patients. It also discusses the syndrome of ‘cascade iatrogenesis’ in relation to patients’ physical and cognitive decline. More emphasis needs to be placed on addressing these issues to ensure the safety and welfare of people with dementia in hospitals. A case study from the author’s clinical practice is used to illustrate the issues. Key words: Dementia ■ Vulnerable patients ■ Communication with patients ■ Cognitive impairment ■ Risk factors ■ Adverse events ■ Acute settings D ementia is a progressive clinical condition that is experienced as an array of symptoms, including memory loss, difficulty expressing language, impaired communication and ability to reason effectively. It can also be characterised by changes to personality and mood. The main types are Alzheimer’s disease (a condition that increases in severity), vascular dementia, frontotemporal dementia, and dementia with Lewy bodies (National Collaborating Centre for Mental Health, 2007; Alzheimer’s Society, 2013). There is no known cure for dementia (Livingston and Frankish, 2015). Each form manifests in different ways and disease progression varies between types of dementia. Lewy body dementia, which is often associated with Parkinson’s disease, may cause the person to experience visual hallucinations. Disturbances to sleep patterns such as moving around or speaking at night are also a feature of this disease (Walker et al, 2015). Those with frontotemporal dementia may experience a significant change in personality and behaviour, problems with language production and verbal expression of words (Bang et al, 2015). Lesley Butcher, Lecturer in Adult Nursing, Cardiff University, School of Healthcare Sciences, Cardiff, ButcherL3@cardiff.ac.uk Accepted for publication: January 2018 358 People with vascular dementia may have issues with urinary urgency, frequency and urinary incontinence (Sakakibara, 2012). They may become depressed, apathetic and more emotional than is usual for them (Nina, 2014).These are just a few examples of a complex condition that affects about 850 000 people in the UK (Alzheimer’s Society, 2015). Research suggests that one quarter of acute hospitals in the UK are occupied by patients who have the condition, and it highlights barriers to caring for people with dementia in this setting (Alzheimer’s Society, 2009).These include environmental unsuitability, staffing issues and lack of staff education in dementia care (Houghton et al, 2016). Hospital staff feel inadequately prepared to care for people with dementia (Allwood et al, 2017) and some experience feelings of guilt regarding failure to meet the needs of these patients (Clisset et al, 2013). Poor outcomes associated with the hospitalisation of people with cognitive impairment are well documented (Care Quality Commission (CQC), 2013; Glover et al, 2014; George et al, 2013). The reasons for this are not straightforward and consist of factors that often feed into one another through the process of ‘cascade iatrogenesis’ (Thornlow et al, 2009). From a nursing perspective, it is vital to be aware of the vulnerability of those with dementia who are hospitalised. It is essential for all staff to have an up-todate working knowledge of dementia, which should include an understanding of the lived emotional experience of the person. It is only then that we may communicate, support, advocate and work in partnership with people living with this condition. Setting the scene: an example from practice Mrs M was admitted to a UK hospital after a fall. She was 82 years old, had vascular dementia and had been living at home with her husband. Mrs M had moderate cognitive impairment, but was mobile and was able to carry out her activities of daily living with prompting and with support from her husband. The assessment in hospital did not find a fracture, but the fall had caused some soft tissue injuries and affected her confidence. Mrs M also had a urinary tract infection (UTI), which had most likely contributed to the fall, for which she was treated with antibiotics. Physiotherapy was arranged, with a view to drawing up a plan to go home. However, 7 weeks later Mrs M remained in hospital and was referred for a nursing home assessment. On review of the hospital notes over the 7 weeks, there unfolded a story of decline, which changed the course of Mrs M’s hospital stay, discharge plans and, ultimately, her life. It was found that she: © 2018 MA Healthcare Ltd ABSTRACT British Journal of Nursing, 2018, Vol 27, No 7 Downloaded from magonlinelibrary.com by 134.148.005.068 on April 23, 2018. CLINICAL FOCUS ■■ Had poor eyesight, but had left her glasses in A&E, which were subsequently lost ■■ Became agitated and more confused in the hospital environment ■■ Had no physiotherapy input as was deemed ‘non‑compliant’ ■■ Was prescribed benzodiazepines for anxiety and restlessness ■■ Became sleepy and confined to bed ■■ Developed skin tears, requiring daily dressings to her legs ■■ Was given a urinary catheter for onset of incontinence ■■ Developed slight dysphagia and was prescribed a texture-E (fork-mashable) diet ■■ Declined food and fluid, and lost 15 kg in 7 weeks ■■ Developed a grade-3 pressure ulcer on her sacrum ■■ Became tearful, withdrawn and non-communicative with staff. It was evident that Mrs M’s condition had been reviewed regularly during the ward round. However, each entry included the phrase ‘Awaiting placement’, as opposed to any intervention or input received. Disturbingly, on one occasion, a doctor had written in the notes: ‘Mrs M is very tearful and upset because she hasn’t seen her mother today. I reassured her that her mother would have died quite some time ago.’ The word ‘reassured’ in this context was a paradox. There appeared to be no understanding of Mrs M’s reality and how best to communicate with her empathetically. Rather, there was the expectation that a person with impaired cognition, in an emotional state, should somehow accept a disturbing revelation, forcing them into a reality within which they are unable to function nor understand. Mrs M was discharged to a nursing home and died within a few months. This scenario is not an isolated or rare event. Background Historically, dementia care has not been prioritised by health commissioners and government policymakers, which, in Banerjee’s (2010) view, has been influenced by negative and incorrect beliefs associated with dementia among both the general public and health professionals. Myths such as ‘dementia is a part of old age and nothing can be done’ have been perpetuated, resulting in people with dementia missing out on essential care to promote their wellbeing, crisis prevention and support for families. © 2018 MA Healthcare Ltd Dementia care in acute settings Outcomes for people with dementia are markedly poorer than for other people, and they will have significantly longer length of stays after an acute hospital admission than those admitted for the same reason who do not have dementia (CQC, 2013). They are more likely to be readmitted following discharge, and a substantial number of people with dementia die in hospital compared with those without dementia.An increased length of stay in hospital for this group also worsens symptoms of cognitive impairment, as well as physical health, and the probability of discharge to a nursing home is high (Alzheimer’s Society, 2009). Sampson et al (2013) showed that long-term survival is poor in people with dementia, with almost half (48.3%) of those admitted to an acute general hospital dying within a year of discharge.This is half the survival rate of those without dementia. Morrison and Siu (2000) studied the survival rate of patients with and without British Journal of Nursing, 2018, Vol 27, No 7 dementia admitted following a hip fracture. After 6 months, 55% of those with dementia had died compared with 12% of other patients. Likewise, the death rate for patients admitted for pneumonia was 53% for those with dementia compared with 13% without after 6 months. Admissions of frail adults with dementia are complex and often ‘complicated by falls, immobility, pain, delirium, dehydration or incontinence’ (Glover et al, 2014). Hospital acquired-delirium is common in patients with dementia, but it is often not recognised or treated appropriately (George et al, 2013). Likewise, adverse events such as medication errors, infection and pressure ulcers are common with this condition (Watkin et al, 2012). Despite this, review of clinical incident reports revealed that staff appeared to have little understanding that cognitive impairment was a risk factor for such events (Watkin et al, 2012). The CQC (2013) has raised concerns that 29% of people with dementia admitted to hospital do not have their dementia status recorded. Such under-recording can affect not only the patient’s care, but the way hospitals ultimately prioritise funding, staffing and training support for staff. People with dementia are also more likely to have a poor experience of end-of-life care (Davies et al, 2017): they are less likely to have advanced end-of life care planning, be referred to palliative care services and prescribed palliative care medications. Why does this happen? Thornlow et al (2009) describes a syndrome of ‘cascade iatrogenesis’, whereby one relatively minor action or event can trigger an ongoing progression of complications during the hospital stay. It may begin with a nursing or medical intervention, which unintentionally brings about a negative consequence: one adverse event will lead to another, then another and so on. In Mrs M’s case, her decline in function may have been initiated by something as simple as losing her glasses.The subsequent lack of vision, combined with unfamiliar people and surroundings, was a recipe for severe anxiety for someone like Mrs M. In such cases, if the anxiety is not met with appropriate support, this can escalate to agitation. Misinterpretation of the agitation can result in negative staff interactions, the introduction of sedatives and decisions made as to the lack of rehabilitation potential. Withdrawal of physiotherapy, plus the sedatives, inevitably leads to reduced mobility, increased confusion and drowsiness. This, in turn, can cause reduced appetite, dysphagia, poor nutrition and eventually the development of pressure ulcers. All these issues affect a patient’s cognitive impairment, leading to more complications.The cascade effect continues, with medical problems growing daily as the patient’s length of stay increases. Unfamiliar environment People living with dementia in their own homes may struggle, but will cope well with the support of familiar people in a familiar environment. However, hospital wards can be particularly frightening places for anyone with dementia (Alzheimer’s Society, 2015). Changes to an environment can intensify confusion and anxiety (Badrakalimuthu and Tarbuck, 2012). Someone like Mrs M will already have heightened anxiety and confusion due to the UTI and finding herself in alien surroundings. 359 Downloaded from magonlinelibrary.com by 134.148.005.068 on April 23, 2018. Communication difficulties between staff and patient can be caused by both parties misinterpreting the intended message and give rise to ‘difficult behaviours’ (Young, 2012). Initial anxiety may be exacerbated by personal care. For example, patients might find themselves suddenly being stripped of clothing and changed into a hospital gown by strangers, who fail to take adequate time to explain what they are doing. Likewise, it would be easy for a person living with cognitive impairment to misinterpret an attempt to take blood for a test as an attempt to cause harm, if the need for explanation and reassurance is not considered. Similarly, a patient’s frustration at not being able to express that he or she is looking for the toilet might be compounded by a member of staff ushering the person ‘safely’ back to bed, without attempting to ascertain their need. In such cases, the patient’s response might, understandably, be one of frustration. The expression of agitation can often be a symptom of an unmet care need causing distress (Dewing, 2010), which a staff member without adequate knowledge and skills in dementia care may misjudge as something else. Misunderstanding and failing to communicate effectively with a person with dementia can often be the trigger for aggressive outbursts (Chater and Hughes, 2012). Unmet care needs can also manifest as refusal to accept interventions. For example, someone who needs the toilet, but who is assisted to bed instead, might then have an episode of urinary or faecal incontinence. If, at that time, a care worker places a plate of food in front of the patient, the most likely response would be to decline it. If the care worker then attempts to physically assist the person to eat, the patient might push the spoon away or hit out in agitation. They might shout for their partner, daughter or anyone they associate with understanding them. Due to the behaviours expressed, the person with dementia will be at risk of being labelled as ‘challenging’ or ‘non-compliant’. Although the use of such phraseology is now recognised as inappropriate, documentation might suggest ‘refused food and fluid’, ‘patient is wandering’ or ‘shouting and disrupting other patients’ (Price, 2014). Ironically, the introduction of sedatives might be considered to help ‘calm’ the person so they are more amenable to accepting ‘care’. Use of benzodiazepines and antipsychotics The Alzheimer’s Society (2009) notes that antipsychotic medication is used more commonly with people who have dementia to treat behavioural symptoms. However, these drugs are known to cause significant side effects such as oversedation, dysphagia, Parkinsonism and stroke (George et al, 2013).They are also known to increase mortality (Kales et al, 2012). Despite the common use of antipsychotics, there is ‘limited evidence of clinically meaningful benefit’ (Corbett et al, 2014). Only risperidone is recommended in patients with severe aggression or pre-existing psychiatric conditions, for a maximum of 12 weeks. Benzodiazepines are most commonly prescribed in older people, however, paradoxically, this age group is more susceptible to their adverse effects, such as drowsiness and fatigue, and they are associated with a ‘5-fold increase of cognitive events’ 360  (McMillan et al, 2013) and a greater risk of falls (Echt et al, 2013). Prescribing these medications for people with dementia would appear to be incongruous with their condition. Personal barriers Person-centred care is widely seen as the gold standard to caring for those with dementia in any setting (National Institute for Health and Care Excellence, 2016). However, a qualitative observational study (Clissett et al, 2014) noted that staff were missing opportunities to provide person-centred care. Health professionals seemed ‘unable or unwilling’ to make a connection with the person with dementia and chose to end interactions quickly.There were observed incidences where attempts made by patients to interact were invalidated by the staff member by failing to acknowledge the person. In the acute setting, the fact that the person has dementia is often seen as ancillary to the reason for admission. Priority is therefore given to medical care and nursing tasks, with the extra needs of a person with dementia being seen as disruptive to workload (Clissett et al, 2013). Health professionals admit that they struggle to cope with cognitively impaired patients who present with communication problems, confusion and ‘challenging behaviour’ (Alzheimer’s Society, 2009). Sheard (2010) emphasised that people with dementia rely more on ‘feelings’, as opposed to reason and logic, and explained the importance of engaging in the emotional care of the person with cognitive impairment. He also asserted that some health professionals find emotional care threatening and tend to mask their fear with ‘detached professionalism’. Dignity, respect and compassion have always been central to nursing care (Blackhall et al, 2011), however, they are not always demonstrated in the care of people with dementia (Alzheimer’s Society, 2009). Some nurses express feelings of guilt knowing that they are not meeting the needs of patients with dementia, as they have to prioritise people who are more medically unwell (Clissett et al, 2014). Takai et al (2009) explain that emotional strain, leading to burnout, is common among caregivers of people with dementia, stating that ‘extreme physical and mental fatigue, emotional exhaustion, decreased work motivation and lack of empathy towards others’ may be observed. Factors that affect a health professional’s tendency to ‘burnout’ are complex and can be influenced by external factors, life situation, as well as the individual’s emotional resilience (Jackson et al, 2007). However, given that health professionals struggle to cope well with caring for a person with dementia, it is reasonable to assert that more support and training is required not only to help patients but also to retain staff and prevent burnout. Knowing the theory behind dementia is only the tip of the iceberg when it comes to enabling a person to feel confident in working effectively with a person who has dementia.While knowledge of different types of dementia and their specific manifestations can be helpful, it is crucial to be competent in the practical aspects of communication and approaches to the delivery of care. In the view of Chater and Hughes (2012), most nurses do want to learn the practical approaches to communication and care. © 2018 MA Healthcare Ltd Misunderstandings in communication British Journal of Nursing, 2018, Vol 27, No 7 Downloaded from magonlinelibrary.com by 134.148.005.068 on April 23, 2018. CLINICAL FOCUS Organisational barriers Despite the desire many nurses have to improve care, without organisational support, progress toward positive change in dementia care will be limited (Sheard, 2014). Chief executives and hospital managers need to promote a culture of change to ensure that staff are well supported and trained appropriately, and to minimise the risks to people with dementia. Implementing a person-centred approach to the care of patients with dementia can sometimes be undermined by staffing shortages (Argyle, 2012).This can lead staff to feel under pressure to provide adequate care for all patients. Organisations often resort to using agency staff to provide one-to-one support for patients with cognitive impairment who exhibit challenging behaviours.A pilot study by Champion (2014) estimated that the cost of such agency care amounted to £25 000 over a 6-month period. This is not only costly, but fails to provide continuity of care for patients with dementia, who need familiarity. Using agency staff could also cause more confusion and distress for patients. Arguably, the £25 000 might be better spent on employing a regular member of staff for an entire year. This would offer better continuity not only for patients, but also within staff teams. Staffing in the NHS is a complex issue, and it is crucial to ensure that there is provision to ensure people with dementia receive high-quality care. Consistent and stable staffing is key to this (National Collaborating Centre for Mental Health, 2007), and will also contribute to reducing adverse events and costly length of stay. 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It includes a selection of case studies to illustrate the main points. 362 Order your copies by visiting or call our Hotline www.quaybooks.co.uk +44(0)1722 716 935 © 2018 MA Healthcare Ltd ISBN 13: 978-1-85642-308-3; 190 x 245mm; paperback; 400 pages; publication 2006; £39.99 British Journal of Nursing, 2018, Vol 27, No 7 Downloaded from magonlinelibrary.com by 134.148.005.068 on April 23, 2018.