Internationally it is estimated that 21–42% of older people attending an emergency department (ED) will have cognitive impairment or dementia (Gagnon-Roy et al, 2018). The World Health Organization (WHO) identifies dementia as a global public health challenge (Wortmann, 2012). It is predicted that the prevalence of dementia will rise to 131.5 million people worldwide by the year 2050 (Digby et al, 2018).
Dementia is an umbrella term used to describe a progressive decline in cognition. The World Alzheimer Report 2019 describes devastating symptoms that compromise the person's ability to fully and equitably engage in everyday activities (Alzheimer's Disease International, 2019). Older people are mostly affected and in the advanced stages of dementia frequently require hospital admission for complications related to infections (Pinkert et al, 2018). Older people with dementia may be treated unfairly in hospital because of their ability to make decisions, including those related to healthcare, is diminished (Alzheimer's Disease International, 2019). As the condition advances, the older person with dementia may have difficulty explaining their symptoms and communicating their past medical history.
In the ED, rapid assessment to detect life-threatening conditions is emphasised (Parke et al, 2013; McConnell et al, 2016). During the course of a rapid assessment the ED nurse may fail to pick up on subtle signs of illness, misattributing physical symptoms to the dementia rather than an underlying serious condition (Shefer et al, 2014). Moreover, other important elements of care such as pain management, assistance with personal hygiene or pressure area care can become less of a priority (Dahlen et al, 2012). This may lead to a host of negative consequences for the older person with dementia, such as suboptimal pain management, worsening of behavioural symptoms and even delayed or inappropriate treatment. This disparity is unacceptable and adds to the distress of the older person with dementia and their carers (Burgstaller et al, 2018). Carers are defined as adults aged over 18 providing care for another adult who may be a family member, as distinct from paid or voluntary care (National Institute for Health and Care Excellence, 2020). Therefore, identifying research to inform nursing practice is essential in improving ED care experiences for this group.
Background
Three systematic reviews examined what clinical interventions were effective for older people with dementia or cognitive impairment in EDs and whether ED culture and context had an impact on their effectiveness (Parke et al, 2011; Clevenger et al, 2012; Schnitker et al, 2013). These three reviews included research that explored the use of screening tools (falls risk, delirium, pain assessment) and education of staff to enhance dementia care experiences (Parke et al, 2011; Clevenger et al, 2012; Schnitker et al, 2013). In all three reviews there was little evidence of the effectiveness of the tools and the educational interventions. The role of ED nurses in enhancing experiences was considered only as part of screening for delirium or cognitive impairment.
Overall, these reviews highlighted a lack of high-quality evidence to support ED practice development to enhance the care of persons living with dementia admitted to an ED. No studies reported what was important to older people with dementia and their carers in an ED visit (Parke et al, 2011). In addition, no studies examined ED culture and context and the possible impact of that on care processes such as nurse triage assessment and identification of acute illness in an older person with dementia (Clevenger et al, 2012).
Recently, research has piloted the use of hospital readiness communication tools and the Pain Assessment in Advanced Dementia tool (PAINAD) to improve dementia care in ED (Fry et al, 2015a; 2015b; Parke et al, 2019). These tools show promise, but need further development before they are ready for practice. In improving services, those with the greatest insights about what needs to change or what can be improved are those receiving and giving care in frontline practice (Parke et al, 2011; Manley et al, 2011; Dewar and Cook, 2014). These three reviews recommend that the ED experiences of older people with dementia, their carers and nurses must be captured to determine what strategies might enhance care in this context and why. The role of carers and their involvement in more dementia-attuned ED care must also be further explored (Parke et al, 2011; Clevenger et al, 2012; Schnitker et al, 2013).
Aims
The aims of this integrative review were to build on the findings of the three previous systematic reviews and to identify the experiences of older people with dementia, their carers and ED nurses.
Method
An integrative review of primary research studies was conducted using a seven-step systematic approach developed by Wakefield (2014):
Literature search
From a modified PICo tool (Table 1) key search terms were generated to focus the review question (Aromataris and Munn, 2017). A search of the online databases Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline and PsychINFO was performed. Inclusion criteria comprised English language papers published in peer-reviewed journals from 1 January 2012 to 30 April 2019 in order to build on the three previous reviews.
| Population (P) | Older people with dementia, carers, emergency department nurses |
| Phenomenon of interest (I) | Dementia/experiences of giving and receiving care |
| Context (Co) | Emergency department setting |
Eligibility criteria
In keeping with Wakefield (2014), the review focused on primary research exploring the experiences of older people with dementia, their carers and ED nurses. Grey literature and discussion or opinion papers were excluded.
Search strategy
Search terms were used in combination with the Boolean operators ‘AND’ and ‘OR’ to identify all relevant articles (Box 1). Different combinations of the search terms were used to widen the search.
Study selection
Articles were screened initially by title and abstract for relevance and then by reading the full text. As all articles included were qualitative, they were appraised using the Critical Appraisal Skills Programme (CASP) (2018) tool for qualitative research (Box 2). The CASP framework assesses the methodological quality and strength of research using a grading system of 10 questions resulting in a possible CASP score of 10. All papers were of good methodological quality. From each paper, relevant information including study design, country, method, sample characteristics, approach to data analysis and interpretation, impact on clinical practice and information relevant to review aims was extracted (Table 2). Identified articles were thematically analysed using the six-step approach described by Clarke and Braun (2013):
| Authors/year/country/title | Type of study | Research aims | Data collection/analysis | Key findings | Key message |
|---|---|---|---|---|---|
|
Parke et al 2013 Canada
|
Interpretive, qualitative exploratory design |
To identify factors that impede/facilitate safe transitional care for PWD in the ED. To identify potential solutions that would support nurses to provide sensitive care | Three phases: interviews; creation of a photographic narrative journal; photo-elicitation focus groups. Verbatim transcription. Nvivo |
Being under-triaged; time pressures; lack of attention to basic needs; feeling ignored, forgotten and unimportant. Triage system in the ED does not recognise atypical presentations—sets in motion a cascade of vulnerability of older PWD. Family members value the relational aspects of care—recognition of vulnerability, communication, interactions with nurses | Nurses should be advocates for relationship-centred care |
|
Fry et al 2015(a) Australia
|
Exploratory qualitative study. Purposive sampling |
To explore practice of care among ED nurses caring for older people with cognitive impairment who presented in pain from a long bone fracture | Focus groups (4) |
CI is a barrier to pain management and often leads to suboptimal care because of lack of verbal response. ED nurses need high levels of confidence and self-efficacy (ability to act) to initiate and deliver high-quality care for this group | Being confident and having self-efficacy can help ED nurses to develop a more therapeutic relationship with the older person with CI and their family members. Confidence and self-efficacy is central to caring and a compassionate approach. Need for education and clinical exposure to develop confidence and self-efficacy |
|
Fry et al 2015(b) Australia
|
Qualitative descriptive study |
To understand ED nurses' perceptions of the role of family/carers for older cognitively impaired persons experiencing pain as a result of a long bone fracture | Focus groups (4) |
ED nurses perceive that family members: were valuable in assisting staff to build the clinical picture on arrival in the ED; can provide critical information that would otherwise be unknown; reduce negative impact of the ED environment on patient |
Family members are the hidden workforce. Collaboration between family members and nurses needs further exploration. Role of family members in ED is sometimes unclear |
|
Hunter et al, 2017 Canada
|
Interpretative, descriptive exploratory design: social ecological perspective |
To understand safety and harm in rural ED transitional care for community-dwelling older adults with dementia from perspectives of HPs. HPs asked to describe their experiences of working with older people with dementia and their caregivers in ED | 2 small rural EDs (95 inpatient beds/76 inpatient beds) |
HP perspectives: ED is challenging for older people with dementia. Chaotic and overcrowded. This group not a priority due to priorities of emergency care. HP sometimes too busy to give proper care to this group. Competing pressures in triage. HPs experience moral distress when they cannot provide care that they should be able to give. Negative consequences: no safe space, no quiet environment. HPs sensitive to family member situation. Need to look at older people with dementia and family member as a complete package—obligations to both | Small ED can be of benefit: potential to get older person with dementia out of ED faster due to good community links. Disadvantages: making assumptions or becoming complacent about patients who are well known to HPs |
|
Watkins et al, 2019 Ireland
|
Appreciative inquiry: discovery phase | To generate insights about what matters and is valued by family members of older people with dementia in the ED and to capture the experiences of ED nurses looking after older people with dementia in an episode of care | Single site, large ED |
Two themes: what matters to family members; challenges for family members and nurses in ED. Being triaged quickly enhances experiences. Triage nurse under pressure to see everybody as fast as possible. Priority has to be given to heart attacks/strokes. Cubicle space offers sanctuary. Family members fear way older person with dementia might behave in a chaotic environment. Risk of becoming a public spectacle. ‘Conveyor belt’ nursing. ED nurses remote from personal contact. Some ED nurses managing to integrate technical and relational aspects successfully | Older people with dementia did not take part as in advanced state of the disease |
CI=cognitive impairment; ED=emergency department; Nvivo=data analysis software PWD=person with dementia; Key: HP=health professional; ED=emergency department
Each article was examined and the authors discussed core ideas, concepts and naming of themes.
Results
Summary of characteristics
Initially, 470 papers were retrieved. After screening titles and abstracts for relevance and removing duplicates, five papers from four studies were synthesised in the review (Figure 1). All used interpretative, qualitative designs (Table 2). Countries of origin were Canada (n=2), Australia (n=1) and Ireland (n=1). Two articles were from a single study (Fry et al, 2015a; 2015b). These two papers were part of a large multicentre study that conducted focus groups (n=16) with ED nurses (n=80) across four EDs. Only one study (Parke et al, 2013) included older people with dementia (n=6). After analysis, three main themes emerged. These were as follows:
Carers and older people with dementia: waiting and worrying
A visit to the ED was a stressful experience for carers primarily because they worried about how the older person with dementia might react in a chaotic environment (Parke et al, 2013; Fry et al, 2015a; Watkins et al, 2019). Carers found that waiting to be triaged was challenging. Triage affords priority to those patients who present with an urgent problem such as a heart attack or stroke (Parke et al, 2013; Hunter et al, 2017; Watkins et al, 2019). Under this triage system, if the older person with dementia does not meet this urgent category or if they cannot explain their symptoms because of severe cognitive impairment, they are likely to be given a lower triage category by the triage nurse (Parke et al, 2013; Fry et al, 2015a; 2015b; Hunter et al, 2017; Watkins et al, 2019). The older person with dementia may slip down the priority level because they have dementia. This could result in delayed treatment and their needs being underestimated and unmet. Carers were left feeling that other vital aspects of care, such as effective pain relief, nutrition, hydration or personal hygiene needs were not afforded attention.
Carers also believed that a delay in triage could potentially compromise the dignity of the older person with dementia and their behaviour might deteriorate (Parke et al, 2013; Watkins et al, 2019). Behavioural symptoms such as swearing or shouting drew attention from onlookers and other patients waiting to be seen (Watkins et al, 2019). For this reason, carers wanted the older person with dementia to be given priority to protect them from becoming a ‘spectacle’ (Watkins et al, 2019). From a patient perspective Parke et al (2013) suggested that older people affected by dementia experienced panic in a crowded ED waiting room. Older people with dementia were worried about the physical problem that brought them to ED, but also worried about not being able to cope with high anxiety levels in an environment that was very stressful for them. Nurses in a busy ED did not always appreciate such anxieties and stress.
Nurses juggling priorities
In all four studies, the nurses acknowledged that caring for an older person with dementia in an ED was challenging (Parke et al, 2013; Fry et al, 2015a, 2015b; Hunter et al, 2017; Watkins et al, 2019). The ED nurses highlighted the complexity of caring for patients with diverse needs. This included the older person with dementia who may require additional care such as management of behavioural symptoms, which can be exacerbated by acute illness. The ED nurses described a work environment that was chaotic and congested. They described the pressures of juggling time, space and high numbers of patients with diverse presentations (Parke et al, 2013; Hunter et al, 2017; Watkins et al, 2019). ED nurses thought that the priorities of emergency care were unsympathetic to the more relational elements of care such as relieving anxiety or offering reassurance to the older person with dementia or their carer (Parke et al, 2013; Fry et al, 2015a, 2015b; Hunter et al, 2017; Watkins et al, 2019).
There were times when ED nurses were able to provide a more personal approach, whether this was finding out what pain relief worked for an individual or moving a person to a cubicle space to protect the older person with dementia from the public gaze (Fry et al, 2015a; Watkins et al, 2019). ED nurses stated that they experienced emotional distress when heavy workloads impacted their ability to give the older person with dementia the type of care they needed and deserved (Fry et al, 2015b; Hunter et al, 2017).
Strategies for improvement; taking a partnership approach
The studies in this review highlighted some more negative aspects of the care of the older person with dementia in ED, but also identified potential strategies for improvement. Three studies recommended modifications to the current triage system so that the needs of the older person with dementia could be assessed in a timely manner (Parke et al, 2013; Hunter et al, 2017; Watkins et al, 2019).
Involving carers as part of relationship-centred approaches was another strategy. Relationship-centred care calls for a shift in focus from medical interventions to human connections and relationships as equally important elements in the nursing process (Parke et al, 2013; Watkins et al, 2019). The ED nurses believed that the presence of the carer may calm an older person with dementia who is distressed in a chaotic environment (Parke et al, 2013; Fry et al, 2015a; 2015b). Carers could help with personal care (Hunter et al, 2017) and their knowledge about the older person with dementia as a person could assist ED nurses to get a better sense of care needs (Parke et al, 2013; Fry et al, 2015a; 2015; Hunter et al, 2017; Watkins et al, 2019). The ED nurses stated that carer presence could also reduce their workload and stress (Fry et al, 2015b). All articles suggested, therefore, that a practice partnership between carer and ED nurse could be fostered within a relationship-centred approach to care (Parke et al, 2013; Fry et al, 2015a; 2015b; Hunter et al, 2017; Watkins et al, 2019). The role of carers in partnership with ED nurses appears promising (Fry et al, 2015b; Hunter et al, 2017).
Discussion
The studies in this review provide a snapshot of the experiences of carers accompanying an older person with dementia in ED and the competing demands on nurses caring for them (Parke et al, 2013; Fry et al, 2015a, 2015b; Hunter et al, 2017; Watkins et al, 2019). Few studies were identified by the literature search, suggesting that research in this field is underdeveloped. Three previous systematic reviews recommended more research of the experiences of older people with dementia, their carers and ED nurses to determine what strategies might enhance care and why (Parke et al, 2011; Clevenger et al, 2012; Schnitker et al, 2013). They recognised that the role of carers in ED should be further explored. However, the research evidence to support this has progressed little in the past 7 years. This review suggests that older people with dementia slip down the priority level in ED simply because they have dementia. ED nurses may misattribute exacerbation of behavioural symptoms to cognitive impairment and so the potential for the older person with dementia to have a serious underlying condition is overlooked. This is known as ‘diagnostic overshadowing’ (Shefer et al, 2014). Such discrimination is unacceptable and results in the older person with dementia receiving delayed or inadequate care. It is difficult to say if this is common practice. Increasing awareness among ED nurses of the positive contribution that carers can make to the assessment process could be part of the solution in preventing this.
Practice partnerships between carers and ED nurses is proposed as a strategy to address the needs of older people with dementia in a relationship-centred way. Older people with dementia in ED may be in the advanced stages of the condition (Sleeman et al, 2018) and therefore unable to tell healthcare staff how they feel or what is happening. The practice partnership centralises the needs of the older person with dementia when they are unable to do this for themselves. Relationship-centred care focuses on three components:
It is suggested that nursing aspires to more relationship-centred care (Sharp et al, 2017) and adopting such an approach could have several benefits in an ED context. Older people with dementia may receive care that is sensitive to their needs, promoting their dignity. Carer anxiety will be reduced and the self-worth and sense of purpose of nurses will be increased (Ryan et al, 2008; Dewar and Nolan, 2013; Coffey et al, 2019). Frameworks such the Fundamentals of Care Framework (Kitson et al, 2013) or the Senses Framework (Nolan et al, 2006) may support this in practice. The Senses framework (Nolan et al, 2006) comprises six ‘senses’, of:
The underlying premise is that good relationships and good care can be delivered only when the ‘senses’ are experienced by all groups involved in the episode of caring (Ryan et al, 2008).
However, there remains a tension in providing technically oriented care and relationship-centred care (Dewing and Dijk, 2016; Brooke and Ojo, 2018; Sharp et al, 2017) and perhaps this tension is most apparent in an ED where life-saving interventions must take priority (Mollaoglu and Çelik 2016). The triage nurse, for example, is under pressure to ensure that those patients who present with a heart attack or stroke receive treatment in the fastest time possible (Parke et al, 2013; Watkins et al, 2019). The ED nurse operates within this system, in the knowledge that it may afford the older person with dementia lesser priority with potentially negative consequences (Parke et al, 2011; Clevenger et al, 2012; Coffey et al, 2014).
Nurses in EDs are expected to perform in a highly efficient task-oriented way, yet have to blend this with relationship-oriented care when the situation demands it (Dewar and Nolan, 2013). As it stands, there is little consensus on how this may be achieved or, indeed, whether or not this is possible in the current organisational climate. The ED has been described as a ‘war zone’ (McConnell et al, 2016) and may not be the right place to care for the older person with dementia. It is questionable whether relationship-centred care is even possible in such a setting (de Vries et al, 2019; Dewing and Dijk, 2016). Meanwhile older people with dementia continue to require the services of EDs in increasing numbers and there is little in the way of alternative pathways.
This review has highlighted the potential of practice partnerships between ED nurses and carers of older people with dementia as a strategy to move towards relationship-centred care. However, there are challenges in implementing this in practice. In systematic reviews of dementia care in acute hospital settings other than the ED (acute surgical ward, acute medical wards), education is seen as important to bridge the gap between the rhetoric of relationship-centred care and practice (Godfrey et al, 2018). It is recommended that education strategies should reflect on practice and be context based (Digby et al, 2017; Turner et al, 2017; Dewing and Dijk, 2016). Mandatory education programmes may also be helpful (Houghton et al, 2016; Surr and Gates, 2017). However, group-based learning away from the clinical area and incorporating personal stories of carers appears to be more beneficial (Surr and Gates, 2017). Education should focus on the human dimensions of care to include the experiences and wellbeing of nurses (Coffey et al, 2019). In addition, there is a need for organisations to support nurses in blending technical and relationship-centred care approaches. This support is long awaited in a hospital culture that appears to have devalued human perspectives and relational practices (Dewing and Dijk, 2016; Digby et al, 2017).
Limitations
This review focus was solely on primary research. However, few research articles were identified. Despite this, this review builds on the three existing reviews that conducted a qualitative and quantitative synthesis of over 60 articles from 1980 to 2012. The authors acknowledge publication bias. Grey literature and other potential empirical sources not in peer review publications may have identified unpublished articles relevant to this review. Secondary interpretation of author findings is also a potential limitation.
Conclusion
This review aimed to identify the experiences of older people with dementia and their carers of being in an ED and ED nurses' experiences of caring for them. Admission to an ED is stressful for the older person with dementia whose needs may not be met and for the carers accompanying them. In the articles examined, the ED setting also presented challenges for ED nurses who felt they were not always able to give optimal care to these patients. Those experiences were shaped by the impact of this environment on nurses' capacity to meet the needs of older people with dementia. The studies in this review advocated for relationship-centred approaches to enhance the experience of older people with dementia and their carers in ED. However, more evidence on how this might be negotiated in clinical practice is needed. There is potential, however, in developing practice partnerships between ED nurses and carers as a component of relationship-centred care. Enhancing the ED experiences of older people with dementia will require collective effort to support ED nurses to blend the technical and relational aspects of care. This effort must include organisational support but also practice development strategies that engage ED nurses in shaping how things are done. A strength of this review is that it has identified a dearth of evidence. There is a need for participatory research approaches to determine what matters and is valued by older people with dementia and their carers in the ED. Collaborative and creative research methods may offer an opportunity for older people with dementia to become part of the research process.