Pain Management for Patients With Dementia

Introduction

This essay aims to critically review the ten selected primary research articles. Studies were collected based on their ability to answer the research question. Therefore, their appraisal will be based on multiple inquiries relating to the topic. First of all, the collected information will be examined to show the understanding of the needs that patients with dementia have in palliative care. Second, the effectiveness of pain management for these patients will be reviewed. Finally, the state of the current pain management practices will be evaluated, followed by recommendations for future improvements. The following investigation into the coverage of the topic of pain management in patients with dementia will be based on the framework created by Caldwell, Henshaw, and Taylor (2011). This framework was chosen because it assesses the quality and thoroughness of research for both qualitative and quantitative studies. Aveyard (2014), defines the literature review as a systematic and comprehensive approach that addresses and interprets a specific topic. As a result, this literature review will show whether the existing scholarship highlights problems in healthcare provision for patients with dementia and offers informed solutions.

Critical Appraisal

As mentioned above, the critiquing framework developed by Caldwell, Henshaw, and Taylor (2011) will serve as the foundation for the review. This approach to assessing health research covers all data collection and analysis methods and considers each aspect of research articles in detail. The strategy developed by the authors proposes to start the appraisal by looking at such elements as the title of the study, its abstract, the literature review, and the rationale for choosing a certain topic. However, the present review seeks to assess the rigor of research itself which means that these aspects can be mentioned briefly.

All studies have a title that describes the chosen themes precisely, including enough information for scholars to interest them (Tuffaha, Gordon, and Scuffham, 2014; Cals and Kotz, 2013). Abstracts are informational and detailed, allowing one to see the key data from each study (Derntl, 2014; Jalalian, 2012). The literature review is brief in all studies, as they focus on new information and research (Ferrari, 2015; Aveyard, 2014). All articles include statistics relevant to the general topic, such as the growing numbers of people with dementia and the failure of nurses to treat pain in patients with this condition (Hadjistavropoulos et al., 2014; Kunz et al., 2009). Overall, these parts of each paper provide a solid foundation for further investigation.

According to the National Health Service (NHS), there exist several principles that should be followed when conducting health research. One of the guidelines states that all studies have to be approved by a research ethics committee (REC) or a similar organization (NHS, 2018b). A REC is accountable for providing a self-governing appraisal of research relating to service users, care professionals, volunteers, or their data, organs, or tissues. This includes considering the rights, dignity, safety, and wellbeing of contributors, confirming that informed consent is recognized and that data protection legislation is preserved (The Stationery Office, 2018). All research approved in NHS premises requires to be accepted by REC, however, decisions to continue with research rest with the care administration.

Aveyard (2014) specified that before conducting any study it is essential to obtain ethical approval from the ethics committee. She also pointed out that this approval will protect participants from harm, ensure justice and beneficence. Also, ethics committees generally outline patient rights, code of ethics, and professional conduct, and guidelines for bioethical issues. For example, as NHS (2018b) requires, all studies have to ask their participants to provide informed consent – thus, authors cannot ask volunteers to agree to a study without educating them on possible risks. Moreover, every person taking part in research should be able to withdraw their consent without reprisal (NHS, 2018b). Ethics committees have arisen in the last three decades and are constantly reforming, mostly with the persistent development of health care technology and the related bioethics issues that have arisen with these progressions. The standards for REC are outlined by the NHS (2018a), including the composition of members, operating procedures, and legal requirements.

All explored studies were approved by an ethics committee, and they demonstrate a commitment to protecting patients’ data (Ulrich et al., 2010). In their article, Sampson et al. (2010) acknowledge that their research encountered significant barriers to accessing patient information since carers for people with dementia were hesitant to provide general practitioner’s records (Coorevits et al., 2013). Jansen et al. (2017b) comment on the privacy of patients and state that data used in the research is not available to the public to avoid participant identification (Jansen et al., 2017b). Other researchers express similar concerns and ensure that people who took part in the investigation would not be identified in any manner.

The process of collecting data was addressed by the scholars as well. In their article, Jansen et al. (2017c) point out that they began each interview with an explanation of the questions and the ethical approval that they received before asking for written, informed consent. All participants could withdraw their agreement based on this document and stop providing information (McInerney et al., 2018). A similar procedure happened during research studies that involved direct interactions with individuals from the sample population.

In all studies, the population is clearly defined and described. The investigation into the samples used in these studies reveals two main directions in which the scholars choose to go when examining palliative care. The first population is represented by healthcare workers, including nurses, assistants, physicians, and caretakers. Medical specialists participated in both qualitative and quantitative studies, and seven studies relied on their knowledge and experience. The article by Van der Steen et al. (2013) can be reviewed separately because it appraised the quality of research and asked professionals to share their expertise (Van der Steen et al., 2013). Other studies were more interested in examining the knowledge of nurses and physicians and their ability to care for patients. For instance, Jansen et al. (2017a) gathered data from 24 registered nurses who worked with patients with advanced dementia. Douglas, Haydon, and Wollin (2016) recruited physicians with similar responsibilities to examine their procedures for pain management. Overall, this type of sample was present in works that aimed to view existing systems of training and knowledge acquisition.

The other population is the patients themselves as well as their family members. Here, the center of discussion was shifted from specialists’ personal opinions about pain management to clients’ experiences with receiving care. For example, the study by Sampson et al. (2010) gathered information from 33 patients and carers to see how many people were in pain or were experiencing the outcomes of improper care. The study’s choice of participants was explained by availability, frailty, and stage of dementia (Sampson et al., 2010). Here, one can see that the focus on patients as the main population allowed scholars to evaluate the points of care that are important for people who receive it rather than provide it. This approach to the research question of nurses’ skills is also important since it opens the discussion about how their training can be modified to tackle specific issues arising during treatment.

The sampling in most qualitative studies is purposive because they investigate a specific problem that concerns particular portions of the population (Kuper, Lingard, and Levinson, 2008). Qualitative research is concerned with narrow topics, and purposive sampling is suitable for analyzing in-depth questions about unique experiences. The inclusion of nurses who work with patients with dementia, for example, is necessary for relation to the research topic, because other nurses would not be able to provide useful information from personal experience. Thus, in the article by Jansen et al. (2017a), a sample of 24 registered nurses is chosen because of their knowledge about patients with advanced dementia.

As for quantitative research, the scholars used criterion purposive sampling and recruited an adequate number of individuals (Jansen et al., 2017b; O’Reilly and Parker, 2013). The advantages of purposive selection in qualitative studies are similar to those of qualitative ones -it makes the findings more precise. However, this method also has limitations – the randomization of the sample increases diversity, while purposive sampling can lower the results’ findings (). Therefore, it is vital to consider the demographics of the population that is chosen in such studies to see which characteristics are prevalent or absent from the sample and how this selection may impact the final calculations.

Several examined studies employ quantitative design, while the majority utilize a qualitative approach. Some researchers collect data with the help of questionnaires and interviews, while others gain access to hospitals’ records to obtain information about patients’ health and the quality of provided care (Gill et al., 2008). Studies with qualitative methodologies employed semi-structured interviews with thematic analysis (Lewin, Glenton, and Oxman, 2009; Gysels, Shipman, and Higginson, 2008). Jansen et al. (2017a) talked with nurses to record their experiences in treating patients with dementia in palliative care. The process of recruiting participants is described clearly, but the questions themselves are not provided in the text – this omission lowers the transparency of the study’s methods and raises an issue of sample selection.

In contrast, Jansen et al. (2017b) present all inquiries that guided the discussion, making their approach audible and replicable. Parahoo (2009), advocates that the use of questionnaires as part of the gathering of data seems less invasive than interviewing. Greenhalgh (2014), however, argue that the use of poorly designed questionnaire will result in the collection of poor-quality data hence, leading to misleading conclusions. However, Aveyard (2014), points that questionnaires as a data collection procedure will be beneficial if it has been well tested and directed. Riachi (2017) interviewed care workers, collecting data about the specific method of communication. McInerney et al. (2018) used a course that assessed participants’ understanding of palliative care about dementia. The courses answers are not available, making the ideas presented in the article less transparent.

Quantitative studies collected information through surveys and data documented in medical records. The study by Chen et al. (2018) used the Questionnaire of Palliative Care for Advanced Dementia to collect data about the nurses’ knowledge about patients’ treatment. The use of pre-existing tools in quantitative research has some advantages – the findings of this research can be compared to similar studies, and its standard results can be analyzed further in the future by applying the same method. All steps and methods are explicitly stated and referenced, confirming their reliability (McCusker and Gunaydin, 2015; Proctor et al., 2015). Douglas, Haydon, and Wollin (2016) specify how pretest and posttest data were gathered using surveys and separating participants into baseline and comparison groups. This information is useful as it suggests a method for professionals who want to assess the quality of nursing care in their establishment and introduce a training intervention. To sum up, all studies justified and explained their information collection methods.

Both data analysis methods seem to answer the posed question effectively, either through calculations and statistics or the analysis and presentation of key themes. In quantitative studies, the focus is kept on patient outcomes and their quality of life during the last months of palliative care. Here, it is vital to select a suitable framework for analysis to avoid arriving at incorrect conclusions (Polit and Beck, 2010). Sampson et al. (2018) designed a prospective cohort study to analyze patients’ pain and distressing symptoms as well as the presence of advance care plans. The scholars presented mean values or medians, using a reliable and straightforward calculation. Douglas, Haydon, and Wollin (2016) specified that they used SPSS Statistics version 21.0, acknowledging additional screenings for missing data, outliers, and normality. Chen et al. (2017) relied on multiple regression analysis and simple descriptive statistics.

In qualitative articles, nurses’ perceptions of pain management practices become the center of discussion. All studies perform a thematic analysis, a reliable and well-examined qualitative approach (Vaismoradi, Turunen and Bondas, 2013). The research by Jansen et al. (2017b) demonstrates the logical progression of using participants’ answers to outline the key ideas. Jansen et al. (2017a) use Braun and Clarke’s paradigm for thematic analysis. The confirmability of research depends on the authors’ ability to identify and overcome their personal biases (). In the present qualitative studies, the authors use established methodologies and provide in-depth discussions that indicate that the utilized models allowed the scholars to tackle the thematic analysis in an unbiased way.

The outcomes of both qualitative and quantitative studies are presented clearly and concisely. In their article, Van der Steen et al. (2013) separate the results into five rounds, each of them improving upon the previous set of recommendations for pain management. In the end, the framework with the most supported advice is developed. The results of qualitative studies are displayed in the form of a text with citations from participants, providing clarity and increasing the conclusions’ trustworthiness. Jansen et al. (2017a) identify core themes and integrated descriptive statistics with the interviewees’ responses to demonstrate the challenges of nurses’ experiences with pain management.

The authors of quantitative studies are thorough in showing the results of their investigation as well. Douglas, Haydon, and Wollin (2016), for example, show pretest-posttest group means with standard deviations and explain what each calculation means. The prospective cohort study by Sampson et al. (2018) includes a variety of visual aids for explaining the results, such as tables and graphs. To sum up, all articles devote significant attention to transparently displaying results.

Discussion

Overall, the results of most studies reveal a need for improvement in the field of pain management for patients with dementia residing in palliative care facilities. All articles have a separate ‘Discussion’ part in their texts. In it, the authors analyze the results and compare them to the previous studies. Sampson et al. (2010) separate the discussion further to address particular concerns that the study revealed. A major portion of the text under this subheading is devoted to explaining the transferability and generalisability of the results. The authors show which populations were recruited (people with dementia in palliative care) and which details of the proposed intervention are essential to success. Moreover, qualitative studies discussing the knowledge that healthcare providers possess show that additional education is vital to the patients’ quality of life.

Based on the results of the studies, the authors conclude that the current state of pain management in palliative care remains unsatisfactory. Jansen et al. (2017b) compare their findings with previous research. They agree that pain assessment in people with dementia is a complicated topic that places additional responsibilities on medical workers (Breivik et al., 2008). Their results also demonstrate the same problems outlined in earlier studies – pain management for patients with dementia cannot rely on self-reporting (Corbett et al., 2014; Achterberg et al., 2013; Zwakhalen et al., 2009). Overall, all researched articles follow the same process of using existing research as a point of comparison and a measure of reliability.

The lack of knowledge by nurses persists as one of the main topics in the examined articles. This conclusion aligns with the older scholarship that highlighted the challenging nature of pain management in dementia patients (McAuliffe et al., 2009; Scherder et al., 2009). The articles indicate that their findings are vital for clinical practice. Jansen et al. (2017c) argue that optimal pain management practices should be reviewed because their universal nature fails to accommodate the complex patient population. The scholars note that their study may encourage hospitals to implement cross-specialty knowledge into medical professionals’ programs (Jansen et al., 2017c). Qualitative studies demonstrate that their contribution to healthcare lies in the revealed issues and gaps in knowledge.

Quantitative articles come to similar conclusions, providing implications for policy change and theory. Sampson et al. (2018) find that people with advanced dementia have many comorbidities and their pain is complex, thus posing that such patients require multidisciplinary care. As can be seen, the implications of most studies align with previous research and each other. Some studies also show that the current interpretation of pain assessment scores may be flawed because it does not account for personal relations between staff and patients (Jansen et al., 2017b). Thus, the present research also offers some topics for future consideration.

The suggestions made by the authors of the examined articles revolve around the same concepts. First of all, the scholars outline the necessity of training and better programs for future nurses that specialize in palliative care. Chen et al. (2017) show that nurses have to learn that patients with dementia cannot be treated in similar ways to other individuals because the patients’ physical pain is also exacerbated by dementia’s symptoms. Jansen et al. (2017a) also point out that nurses may encounter problems with treating patients if they do not feel prepared to address particular end-of-life needs.

The patient-centered approach is another recommendation outlined in multiple studies. Riachi (2017) introduces and assesses the effectiveness of SPECIAL communication methods that create caring relationships and acknowledge the patients’ need for moral support. Sampson et al. (2018) show that services that are not tailored to patients’ specific needs cannot guarantee comfort and pain relief. They base their recommendation on the aspect of patient satisfaction which is inherent in healthcare delivery evaluation (Baalbaki et al., 2008). Thus, this advice can be considered a part of the previous one since nurses’ education can include developing interpersonal skills.

Moreover, some studies ask for interdisciplinary collaboration, highlighting the effect of the pain on patients’ health and stability. Specifically, Douglas, Haydon, and Wollin (2016) stress the need to educate clinicians to use the knowledge from different specialties to address the needs of the vulnerable population. Van der Steen et al. (2013) create recommendations for each domain, highlighting shared decision-making, education, person-centered care as well as emotional and faith-based support. The recommendation for better education is present in all studies, although some authors focus only on some of its aspects.

It is vital to consider the limitations that may stagger the implementation of the discussed recommendations in the field of health care. First of all, changes in education to teach nurses how to address the needs of specific populations require significant financial support. The development of new training programs that provide the necessary information and adhere to the programs’ standards also requires time. Moreover, to change how the information about pain management practices is provided to people, the UK should improve its national policies. The standards outlined by the Nursing and Midwifery Council (2018) support these recommendations by updating the requirements for achieving nursing proficiency.

The main limitation of all examined research is the lack of randomized quantitative studies that would show reliable and comprehensive data about nurses’ skills in palliative care. Qualitative studies provide a foundation on which recommendations for nurses can be developed. Nonetheless, these investigations consider small samples, thus representing instances of nurses’ experiences instead of capturing the state of the nationwide healthcare quality. The strengths of these articles are their transparent data analysis and consistent findings.

This review demonstrates that additional research is necessary to determine the issues that lead to nurses’ and patients’ negative experiences of pain management. The examined literature revealed that nursing education and continuous training should be improved to help the professionals deliver high-quality care. It also identified the lack of interprofessional collaboration – this topic requires further investigation to identify barriers to its enhancement. The findings of the review indicate that the national policy should pay more attention to education and the specific needs of people with dementia. The process of conducting the literature search did not take much time, suggesting that there exists a plethora of resources analyzing the concerns related to pain management in dementia patients.

Conclusion

The topic of pain management for patients with dementia in palliative care has been researched for many years, but it remains a tentative subject in the field of healthcare. The provision of quality care is vital for all patients, but the condition of people with dementia is extremely fragile, making the outcomes of improper care significant. The examined studies are of high quality, acknowledging previous research and constructing hypotheses on earlier scholarly findings. The aspects of articles such as their choice of methods, data collection, and data analysis vary depending on the view that the researchers take. It should be noted that both qualitative and quantitative studies provide new information in the field, addressing different points and closing gaps in knowledge. Moreover, the involvement of healthcare providers in such research is as vital as that of patients. Overall, the use of questionnaires and interviews in qualitative studies reveals the level of nurses’ knowledge. Quantitative studies focus on interventions, providing an insight into the future of research.

The review of the ten primary studies answers the posed question, demonstrating that nurses’ pain management skills often do not match the needs of patients with dementia. While medical specialists have adequate knowledge to care for the general population, the specific problems encountered in palliative care are challenging for many health providers. All articles have several themes that support this notion. Their comprehensive data analysis greatly contributes to the existing research and reveals weaknesses in the current healthcare system. Furthermore, the studies’ recommendations align with each other as well – education, patient-centered care, and interprofessional collaboration are improvement initiatives found in each text. Future research should focus on the outcomes of implementing the designed interventions in different settings and focusing on turning the newly introduced programs into the national standard of care.

Reference List

1. Achterberg, W.P., Pieper, M.J., van Dalen-Kok, A.H., De Waal, M.W., Husebo, B.S., Lautenbacher, S., Kunz, M., Scherder, E.J. and Corbett, A. (2013) ‘Pain management in patients with dementia’, Clinical Interventions in Aging, 8, pp. 1471-1482.
2. Baalbaki, I., Ahmed, Z.U., Pashtenko, V.H. and Makarem, S. (2008) ‘Patient satisfaction with healthcare delivery systems’, International Journal of Pharmaceutical and Healthcare Marketing, 2(1), pp. 47-62.
3. Breivik, H., Borchgrevink, P.C., Allen, S.M., Rosseland, L.A., Romundstad, L., Breivik Hals, E.K., Kvarstein, G. and Stubhaug, A. (2008) ‘Assessment of pain’, BJA: British Journal of Anaesthesia, 101(1), pp. 17-24.
4. Caldwell, K., Henshaw, L. and Taylor, G. (2011) ‘Developing a framework for critiquing health research: an early evaluation’, Nurse Education Today, 31(8), pp. 1-7.
5. Cals, J.W. and Kotz, D. (2013) ‘Effective writing and publishing scientific papers, part II: title and abstract’, Journal of Clinical Epidemiology, 66(6), p. 585.
6. Chen, I.H., Lin, K.Y., Hu, S.H., Chuang, Y.H., Long, C.O., Chang, C.C. and Liu, M.F. (2018) ‘Palliative care for advanced dementia: knowledge and attitudes of long-term care staff’, Journal of Clinical Nursing, 27(3-4), pp. 848-858.
7. Coorevits, P., Sundgren, M., Klein, G.O., Bahr, A., Claerhout, B., Daniel, C., Dugas, M., Dupont, D., Schmidt, A., Singleton, P. and De Moor, G. (2013) ‘Electronic health records: new opportunities for clinical research’, Journal of Internal Medicine, 274(6), pp. 547-560.
8. Corbett, A., Husebo, B.S., Achterberg, W.P., Aarsland, D., Erdal, A. and Flo, E. (2014) ‘The importance of pain management in older people with dementia’, British Medical Bulletin, 111(1), pp. 139-148.
9. Derntl, M. (2014) ‘Basics of research paper writing and publishing’, International Journal of Technology Enhanced Learning, 6(2), pp. 105-123.
10. Douglas, C., Haydon, D. and Wollin, J. (2016) ‘Supporting staff to identify residents in pain: a controlled pretest-posttest study in residential aged care’, Pain Management Nursing, 17(1), pp. 25-37.
11. Ferrari, R. (2015) ‘Writing narrative style literature reviews’, Medical Writing, 24(4), pp. 230-235.
12. Gill, P., Stewart, K., Treasure, E. and Chadwick, B. (2008) ‘Methods of data collection in qualitative research: interviews and focus groups’, British Dental Journal, 204(6), pp. 291-295.
13. Gysels, M., Shipman, C. and Higginson, I.J. (2008) ‘Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?’, BMC Medical Ethics, 9(1), p. 7.
14. Hadjistavropoulos, T., Herr, K., Prkachin, K.M., Craig, K.D., Gibson, S.J., Lukas, A. and Smith, J.H. (2014) ‘Pain assessment in elderly adults with dementia’, The Lancet Neurology, 13(12), pp. 1216-1227.
15. Jalalian, M. (2012) ‘Writing an eye-catching and evocative abstract for a research article: a comprehensive and practical approach’, Electronic Physician, 4(3), pp. 520-524.
16. Jansen, B. D.W., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfatrick, S.J., Morgan, S.M., Watson, M. and Parsons, C. (2017b) ‘Exploring healthcare assistants’ role and experience in pain assessment and management for people with advanced dementia towards the end of life: a qualitative study’, BMC Palliative Care, 16(6), pp. 1-11.
17. Jansen, B. D.W., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfatrick, S.J., Morgan, S.M., Watson, M. and Parsons, C. (2017c) ‘“There’s a Catch-22” – The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives’, Palliative Medicine, 31(8), pp. 734-742.
18. Jansen, B.D.W., Brazil, K., Passmore, P., Buchanan, H., Maxwell, D., McIlfactrick, S.J., Morgan, S.M., Watson, M. and Parsons, C. (2017a) ‘Nurses’ experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study’, Journal of Clinical Nursing, 26(9-10), pp. 1234-1244.
19. Kunz, M., Mylius, V., Scharmann, S., Schepelman, K. and Lautenbacher, S. (2009) ‘Influence of dementia on multiple components of pain’, European Journal of Pain, 13(3), pp. 317-325.
20. Kuper, A., Lingard, L. and Levinson, W. (2008) ‘Critically appraising qualitative research’, BMJ, 337, p. a1035.
21. Lewin, S., Glenton, C. and Oxman, A.D. (2009) ‘Use of qualitative methods alongside randomised controlled trials of complex healthcare interventions: methodological study’, BMJ, 339, p. b3496.
22. McAuliffe, L., Nay, R., O’Donnell, M. and Fetherstonhaugh, D. (2009) ‘Pain assessment in older people with dementia: literature review’, Journal of Advanced Nursing, 65(1), pp. 2-10.
23. McCusker, K. and Gunaydin, S. (2015) ‘Research using qualitative, quantitative or mixed methods and choice based on the research’, Perfusion, 30(7), pp. 537-542.
24. McInerney, F., Doherty, K., Bindoff, A., Robinson, A. and Vickers, J. (2018) ‘How is palliative care understood in the context of dementia? Results from a massive open online course’, Palliative Medicine, 32(3), pp. 594-602.
25. National Health Service [NHS] (2018a) Governance arrangements for Research Ethics Committees. Web.
26. National Health Service [NHS] (2018b) UK policy framework for health and social care research. Web.
27. Nursing and Midwifery Council (2018) Standards of proficiency for registered nurses. Web.
28. O’Reilly, M. and Parker, N. (2013) “‘Unsatisfactory Saturation”: a critical exploration of the notion of saturated sample sizes in qualitative research’, Qualitative Research, 13(2), pp. 190-197.
29. Parahoo, K. (2009) ‘Grounded theory: what’s the point’, Nurse Researcher, 17(1), pp.4-7.
30. Polit, D.F. and Beck, C.T. (2010) ‘Generalization in quantitative and qualitative research: myths and strategies’, International Journal of Nursing Studies, 47(11), pp. 1451-1458.
31. Proctor, E., Luke, D., Calhoun, A., McMillen, C., Brownson, R., McCrary, S. and Padek, M. (2015) ‘Sustainability of evidence-based healthcare: research agenda, methodological advances, and infrastructure support’, Implementation Science, 10(1), p. 88.
32. Riachi, R. (2018) ‘Person-centred communication in dementia care: a qualitative study of the use of the SPECAL® method by care workers in the UK’, Journal of Social Work Practice, 32(3), 303-321.
33. Sampson, E.L., Candy, B., Davis, S., Gola, A.B., Harrington, J., King, M., Kupeli, N., Leavey, G., Moore, K., Nazareth, I. and Omar, R.Z. (2018) ‘Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life’, Palliative Medicine, 32(3), pp. 668-681.
34. Sampson, E.L., Jones, L., Thune-Boyle, I.C., Kukkastenvehmas, R., King, M., Leurent, B., Tookman, A. and Blanchard, M.R. (2010) ‘Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention’, Palliative Medicine, 25(3), pp. 197-209.
35. Scherder, E., Herr, K., Pickering, G., Gibson, S., Benedetti, F. and Lautenbacher, S. (2009) ‘Pain in dementia’, Pain, 145(3), pp. 276-278.
36. The Stationery Office (2018) Data Protection Act 2018. Web.
37. Tuffaha, H.W., Gordon, L.G. and Scuffham, P.A. (2014) ‘Value of information analysis in healthcare: a review of principles and applications’, Journal of Medical Economics, 17(6), pp. 377-383.
38. Ulrich, C.M., Taylor, C., Soeken, K., O’Donnell, P., Farrar, A., Danis, M. and Grady, C. (2010) ‘Everyday ethics: ethical issues and stress in nursing practice’, Journal of Advanced Nursing, 66(11), pp. 2510-2519.
39. Vaismoradi, M., Turunen, H. and Bondas, T. (2013) ‘Content analysis and thematic analysis: implications for conducting a qualitative descriptive study’, Nursing & Health Sciences, 15(3), pp. 398-405.
40. Van der Steen, J.T., Radbruch, L., Hertogh, C.M., de Boer, M.E., Hughes, J.C., Larkin, P., Francke, A.L., Jünger, S., Gove, D., Firth, P. and Koopmans, R.T. (2014) ‘White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care’, Palliative Medicine, 28(3), pp. 197-209.
41. Zwakhalen, S.M., Koopmans, R.T., Geels, P.J., Berger, M.P. and Hamers, J.P. (2009) ‘The prevalence of pain in nursing home residents with dementia measured using an observational pain scale’, European Journal of Pain, 13(1), pp. 89-93.