Dementia is one of the primary causes of ill health worldwide (Public Health England (PHE), 2017). Because of the intricate array of behavioural and cognitive symptoms manifested in those with dementia, the care needs of this population differ widely from those of others. At present, the focus of research and consultations is identifying a cure for dementia, but it is necessary to be practical, and equal importance must be placed on the care provided to those with dementia and the support given to their families and carers.
Due to the symptoms experienced by people living with dementia, most with this condition will require palliative care (World Health Organization (WHO), 2017). Unlike the steady decline and predictability of end-of-life (EoL) symptoms associated with cancer or other disorders such as respiratory disease, the end-of-life symptoms associated with dementia, such as changes in behaviour, disorientation, weight loss and swallowing problems, follow a less predictable trajectory. The fact that people are living longer implies that the prevalence of dementia will no doubt rise. This will impose challenges in dementia care and in turn warrant a change in the demands of the role of community nurses, who provide this care. It is, therefore, essential that the workforce is trained, and that health professionals are able to engage in evidence-based practice in order to provide optimum care. There is, however, a gap in the management of EoL care for patients living with dementia, with substantial evidence showing that these patients have problems accessing palliative care services (National Council for Palliative Care (NCPC), 2007; PHE, 2015; Department of Health and Social Care (DHSC), 2016).
The impact of providing EoL care to patients with dementia has been researched by a number of qualitative studies, and each of these has shown a distinctive view of the barriers associated with providing EoL care to those with dementia.
Aim
This qualitative systematic review explores the evidence surrounding the views of health professionals working in the community who provide palliative care to patients diagnosed with dementia.
Methods
A comprehensive systematic search of the literature was carried out. This involved a widespread and iterative search identifying published literature from Medline, CINAHL, the British Nursing Index, Google Scholar, the Scopus database and Pubmed; keywords identified within the SPICE framework were utilised in the databases. Boolean logic was used to link individual search terms and thereby identify papers that were specifically linked to the topic. No limitation was set on the publication date, which broadened the search and enabled the capture of all relevant research; grey literature was not searched in this review.
A total of 4625 papers were retrieved. To guarantee that all papers retrieved were specific to the research question, they were reviewed again alongside the inclusion and exclusion criteria shown in Table 1. This resulted in seven papers being selected (Figure 1).
| Inclusion | Exclusion |
|---|---|
| Qualitative studies | Quantitative studies |
| Palliative care | Mixed-method studies |
| Views of professionals of all grades | Student nurses as subjects |
| Community-based studies, mixed primary, secondary and tertiary studies will be included, but data will only be extracted that includes primary care | Studies written in a language other than English |
| Studies carried out in the UK and those countries who have equivalent healthcare to the UK | Studies that did not include health care professionals as participants |
| Patients diagnosed with dementia | Review papers |
| Studies investigating a topic relevant to providing palliative care to those patients with dementia; mixed studies will also be included, but only data related to dementia care will be extracted | Studies that focused solely on secondary care |
| Barriers encountered to the delivery of palliative care to those patients with dementia | Studies solely researching patients diagnosed with cancer who do not have a diagnosis of dementia |
Critical appraisal
All papers underwent a quality review based on the Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research. Examination of the seven papers showed wide variations in the quality of the studies, in terms of their strengths and limitations.
All papers used the qualitative paradigm but adopted different approaches; three papers had limited or no link between their perspective and research methodology (Kaasalainen et al, 2007; Davies et al, 2014a; 2014b). This lack of congruency between the philosophical perspective and the methodology used leads to questions about the validity of the data presented. Despite this, the data collection methods used in all the studies corresponded with their methodology, with all objectives providing knowledge that can be used within this systematic review. Yet, in Kupeli et al's (2016) study, the method used was not clearly identified. The researchers did state that they used the realist framework evaluation of context, mechanisms and outcomes, although the lack of a mixed-methods approach affected the validity of the findings.
With regard to papers exploring a suitable environment for such research, all but two papers (Chang et al, 2009; Davies et al, 2014b) discussed this. Sample methods that are commonly used for the identification of participants in health research vary from purposive to random. Non-probability sampling methods were used in all the included studies. It was clear that this was the most appropriate way to identify the sample population, as the researcher consciously selects specific elements or subjects for inclusion in a study in order to ensure relevance. However, non-probability sampling has the disadvantage of not representing the entire population, which affects the rigour and transferability of the research findings. Yet, if done correctly, non-probability sampling can produce similar if not the same quality of results (Denscombe, 2010). In all included studies, the sampling strategy was consistent with the objectives of the method used, as with all qualitative methods, achieving depth of understanding of the phenomena is the main aim.
With regard to data collection and analysis, data were independently reviewed by more than one researcher in five out of the seven studies, which ensured the rigour and trustworthiness of the findings. In all studies, data collection was consistent, systemised and detailed, ensuring that the research process was credible.
Two research papers looking to capture a robust and comprehensive account by using triangulation were Lawrence et al (2011) and Kupeli et al (2016). Lawrence et al (2011) used a form of triangulation where the research question was examined from different angles, but this was only explored through the usual method of source triangulation. Kupeli et al (2016) used triangulation to review their interview field notes and coding. Although this provided consensus within the research, Flick (2017) indicated that it should not be used for this purpose, but rather to capture different elements of the same phenomenon.
| Research papers | Methodology | Method used | Sampling method |
|---|---|---|---|
| Dening et al (2012) | Qualitative rapid participatory/action research | Focus groups – six in total, led by researcher with clinical experiences in the field, structured guide, healthcare professionals only Semi-structured interviews – seven in total, for carers only | Purposive and snowball |
| Kupeli et al (2016) | Qualitative realist approach | Semi-structured interviews – 13 interviews | Purposive |
| Lawrence et al (2011) | Qualitative phenomenology | Semi-structured interviews – 50 interviews | Purposive |
| Chang et al (2009) | Qualitative rapid participatory/action research | Focus groups – five in total Semi-structured interviews – 20 interviews | Purposive |
| Davies et al (2014b) | Qualitative descriptive design | Semi-structured interviews – 21 in total, five included two participants; two groups interviews one with six participants and one with seven participants; and two telephone interviews | Purposive and snowball |
| Kaasalainen (2007) | Qualitative descriptive design | Focus groups – three in total | Purposive |
| Davies et al (2014a) | Qualitative descriptive design | Semi-structured interviews – 67 in total, Focus groups – one in total | Purposive |
The studies included had several limitations: First, five out of the seven papers did not use member checking, and therefore denied participants the opportunity to comment on the accuracy of the findings. However, it is necessary to consider how member checking was undertaken and for what purpose in regard to the research carried out by Kaasalainen et al (2007) and Chang et al (2009). In Kaasalainen et al's (2007) study, the transcripts of the focus groups were sent to members, yet the authors failed to discuss how or who reported back, making it difficult to assess the credibility of the process. Finally, although Chang et al (2009) stated that transcripts were verified, they do not discuss if the transcripts were verified or if the data needed modification; the congruency of the data collected is therefore questionable. Chang et al's (2009) study was the only study not to specify within their results the source of the participant quotations. This therefore made it difficult to assess how representative they are of the views expressed by participants involved, due to the inability to link each quotation to the individual participant. Out of the seven included studies, Lawrence et al (2011) was the only one that mentioned participation. Therefore, it remains unclear in the remaining six studies if all relevant data on the topic were captured and discussed appropriately.
Data extraction and synthesis
Information on methodology, methods, setting, geographical area, culture, participants, data analysis and conclusions was extracted from the seven research papers. This information was then analysed and synthesised using an integrated approach and meta-synthesis analysis, from which the main themes were highlighted. Narrative synthesis was used to synthesise the data.
Results
Even though limitations were identified in all the studies included, the authors felt that the findings of all studies had an element of trustworthiness and credibility. These findings were themed under the categories of service and financial implications; training, education and staff support; communication and family support; and dementia care.
Services and financial implications
Five of the seven papers reviewed identified challenges associated with health services providing care to patients with dementia within the community. Difficulties arose with pathways of care, the structural and functional dimensions of integrated services and finances. Davies et al (2014a) reported a rigid structure with no direct system in place for providing care to patients with dementia at the EoL. The extent of integration was variable, with the structural and functional abilities of the integration of services being inconsistent and delays in care, poor coordination and organisational issues (Davies et al, 2014b; Kupeli et al, 2016). This is not only evident in UK services but seems to be a consistent theme across European countries, such as Germany, Italy and Norway (Davies et al, 2014b). The lack of coordination in palliative care seems to contribute to the poor integration of services and, although this was a problem for all health conditions, it seemed particularly acute for patients with dementia (Davies et al, 2014b).
Pressures on budgets and the high demand for care put added strain on integrated services and affected collaboration between services in both health and social care (Humphries et al, 2016). This led to fragmentation of support, not just across the UK but also within individual health boards. Consequently, the delivery of integrated, continuous EoL care to patients with dementia is delayed. Many of the studies also suggested that, given the variety of needs among patients with dementia at the EoL, there is confusion about who is responsible for funding the care of these individuals (Davies et al, 2014b; Humphries et al, 2016; Kupeli et al, 2016).
Kupeli et al's (2016) study was unique in reporting on services providing seamless care, with good referral techniques and good relationships among staff members. Despite its limitations, this study demonstrated that an integrated approach that views dementia as a health and social care issue can work effectively. In the context of financial constraints to the delivery of palliative care, Kupeli et al (2016) and Davies et al (2014b) concluded that the impact of some services being run as a business and as only ‘profit driven’ is not always shown on service delivery, making a complex system that can be unclear.
Training, education and staff support
It was recognised that training and education played a significant role in the delivery of effective, high-quality EoL care. Again, this theme emerged from the findings of six of the seven included papers, which found a lack of or poor knowledge and skills within community and primary care staff regarding EoL care. Some participants revealed that this was due to the variability of staff, high turnover or lack of staff (Dening et al, 2012; Davies et al, 2014a; Kupeli et al, 2016). However, it needs to be acknowledged that UK national policy states that people should receive appropriate EoL care regardless of their condition (DHSC, 2016), and the Welsh Government (2018) has adopted a number of initiatives to coincide with this, such as the palliative and EoL care delivery plan. Davies et al (2014a) did report that staff used certain tools to improve their knowledge and followed guidelines such as the Gold Standard Framework, with some implementing ‘after-death analysis’, although this was limited and vague.
Challenges associated with staff support were reported in all the included studies. Dening et al (2012) identified that participants felt an element of fear when trying to provide EoL care to people with dementia. Lack of staff and increased workload were barriers that resulted in issues associated with continuity of care (Kaasalainen et al, 2007). With the growing population, there is expected to be an increase in the number of people living with dementia. With the demand on workload and issues around risk and continuity, caring for people with dementia at the EoL represents a key health and social care challenge. Alzheimer's Disease International (2016) reported that, in fact, it is the main challenge in healthcare today.
Communication and family support
Lack of communication hampering collaborative working and the importance of effective communication between staff were reported in some reviewed studies (Kaasalainen et al, 2007; Davies et al, 2014b; Kupeli et al, 2016). Kupeli et al (2016) found that key roles that needed improvement in this aspect were out-of-hours and specialist palliative care nurses, with poor communication and care provision sometimes resulting in ineffective care. Ineffective communication affected not only collaboration but also the image of services and the confidence of some staff (Kupeli et al, 2016). Health professionals also reported facing challenges associated with family members' uncertainty about death and EoL care. Due to this uncertainty, the best approach to EoL care was sometimes missed (Kupeli et al, 2016).
Family support, education and reassurance had an impact on staff and patients. Several of the studies mentioned that staff found this to add to their workload (Kaasalainen et al, 2007; Dening et al, 2012; Kupeli et al, 2016). However, they also mentioned that they found support from specialist nurses, such as Admiral nurses, invaluable when providing care for patients with dementia at the EoL, and that this support resulted in high-quality EoL care.
Dementia care
The findings of the reviewed studies indicated a lack of awareness among staff regarding advance care planning. Although staff agreed on the importance of this, there was little evidence of how, where or when this was being carried out (Lawrence et al, 2011; Kupeli et al, 2016). This mirrors findings from other research, where the lack of completion of advance care plans for patients with dementia is clearly indicated (Goodman et al, 2015; Robinson et al, 2015).
Specifically regarding care provision, symptom management was reported as a challenge in many included studies (Kaasalainen et al, 2007; Chang et al, 2009; Lawrence et al, 2011; Dening et al, 2012; Davies et al, 2014b; Kupeli et al, 2016). Recent local and national guidance has highlighted that all areas of dementia care at the EoL need to be addressed and managed in order to ensure and maintain effective care and quality of life (National Institute for Health and Care Excellence (NICE), 2015; Welsh Government, 2018). However, personal care and dementia-related symptoms and behaviours were emphasised as areas in need of improvement in all of the papers mentioned above.
Discussion
It has been recognised that dementia is one of the primary causes of ill health worldwide (WHO, 2017), and it is seen as a significant contributor to both morbidity and mortality globally (WHO, 2012). Additionally, there is growing evidence to suggest that palliative care needs are not identified at the correct time, resulting in poor access to palliative care services and consequently poor EoL care being delivered (Sachs et al, 2004; Lawrence et al, 2011). The findings of this systematic review draw attention not only to health professionals' continuing to face barriers to providing palliative care to patients living with dementia, but also to some facilitators of good care.
Problems with both structural and functional integrated services were apparent, with care structure being rigid and no direct system being in place for providing care to patients with dementia at the EoL (Davies et al, 2014b). Interestingly, the background literature in these studies acknowledged that there were many services that cared for this group of patients, including a mixture of private and public healthcare. Most of these services came under the commissioning and contracting models used within healthcare. However, due to greater pressures on budgets and with the demand for care increasing, integrated services faced added strain, and the collaboration between health and social care was affected (Humphries et al, 2016). The fragmentation of services ultimately leads to failure to deliver adequate and appropriate EoL care for patients with dementia. Regardless of research showing that non-profit care homes provide better care than for-profit ones (Commondore et al, 2009; Xu et al, 2013), the lack of funding still affected the overall palliative care provided in both types of care homes (Davies et al, 2014b).
In all reviewed articles, training and education were mentioned as being important, from the perspective of linking education to effective good-quality EoL care. Six out of the seven papers found a knowledge and skills gap among community and primary care staff at all levels with regard to EoL care for people living with dementia. Dementia has considerable care requirements, and identifying the right time for palliative care to begin can, therefore, be very challenging. Recent local and national guidelines have highlighted that all areas of dementia care at the EoL need to be addressed and managed in order to ensure and maintain effective care and quality of life (NICE, 2015; Welsh Government, 2018). However, awareness of advance care planning is inconsistent, as is staff confidence to specifically provide the right care to manage symptoms including those specific to dementia, such as psychosocial and spiritual care and pain control (Lawrence et al, 2011).
This systematic review highlighted that lack of communication was the main issue related to all but one of the themes discussed. Effective communication is essential in most nursing activities and is even more crucial in area such as palliative care. Difficulties in communication and ineffective communication between health professionals and patients or their families and among health professionals themselves and family hamper collaborative working, affect the confidence of some staff providing palliative care and hinder service integration. Communication is also strongly linked to the support provided to family and friends, and health staff do find this to be an unwelcome addition to their workload (Kaasalainen et al, 2007; Dening et al, 2012; Kupeli et al, 2016). Some community nurses reported that they found the support offered by specialist nurses to be invaluable and that it increased their confidence. However, this was not readily available to everyone and, due to the challenges associated with effective communication and the resulting uncertainty, the best approach to EoL care was sometimes missed.
Strengths
The main strength of this review was the thematic analysis, as the procedure of summarising and synthesising the evidence ensured effective reporting of the coding for each key finding. This, alongside the information regarding trends within the studies, helped to capture the complexities within a textual dataset. Thematic analysis also proved useful, as it allowed the combining of evidence to better understand factors that affect how the findings can be implemented. To add to the transparency and logic of the data synthesis, a framework was used to provide guidance. The recurrence of themes among the studies also added to the validity of the review (Baxter et al, 2010).
Limitations
A disadvantage of using a narrative synthesis is the lack of transparency due to the absence of formal guidance. Additionally, the review only included studies that were published in the English language, which excluded potentially relevant literature. Studies were also excluded if they were not conducted in a country with a similar health system to the UK, so the review might not reflect the practices of other cultures. Additionally, using thematic analysis can be viewed as unreliable due to the subjective nature of establishing themes (Braun and Clarke, 2006; Nowell et al, 2017). However, a standardised appraisal tool such as JBI Critical Appraisal Checklist for Qualitative Research can be used to overcome this issue and ensure the transparency and validity of a systematic review.
Conclusion
This systematic review offers evidence of the views of health professionals working in the community to provide palliative care to patients living with dementia. Analysis of the research evidence indicated that the provision of good-quality palliative care for patients with dementia remains hindered by many challenges, including poor communication and family support, lack of awareness in dementia care, poor or limited training and education and services that are stretched by financial strain. Even though some reviewed studies showed good practice and care, this was found to be inconsistent and fragmented. Emphasis needs to be placed on further rigorous research on the gaps identified in the evidence and on addressing the specific challenges identified with providing palliative care to patients with dementia.
Recommendations
The evidence generated from this review can provide health professionals with an understanding of the barriers and challenges associated with palliative care and dementia. More qualitative research is needed to enhance understanding of the views of professionals with regard to EoL care for patients with dementia, specifically using either interviews or focus groups involving participants who work within primary and community care and have hands-on experience. A full review of qualitative and quantitative studies including grey literature and unpublished studies is recommended to enhance these findings and strengthen the evidence base. Future research should include evaluation of changes in practice that have eliminated the barriers to EoL care for those with dementia, and developments in this care should be monitored to ensure evidence-based care.