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No / In a developing country such as South Africa, where needs surpass resources, elderly persons living in institutional care due to dementia are generally viewed as well-cared for if their basic needs for security, food and personal hygiene are met. Due to the disabling effect of the condition, residents are often unable to engage independently in occupations that they find meaningful, requiring staff support to enable them to do this. In South Africa staff training on dementia and person-centred care (PCC) is limited, which in turn impacts on how staff interact with residents. This often results in persons with dementia being deprived of opportunities for engagement and occupation that have the potential to bring about well-being. The first author conducted an initial pilot feasibility study to assess Dementia Care Mapping (DCM), a method used internationally to help improve the quality of formal dementia care, at three identified residential care facilities in South Africa. DCM is an observational tool that involves observing care from the perspective of the person with dementia. This paper examines whether DCM could be used as a means to develop quality dementia care in formalcare settings in South Africa despite a lack of human and financial resources.

No / Person-centred care can improve the well-being of patients and is therefore a key driver in healthcare developments in the UK. The current study aims to investigate the complex relationship between cognitive impairment, dependency and well-being in people with a wide range of acquired brain and spinal injuries. Sixty-five participants, with varied acquired brain and spinal injuries, were selected by convenience sampling from six inpatient clinical neuroscience settings. Participants were observed using Dementia Care Mapping – Neurorehabilitation (DCM-NR) and categorised based on severity of cognitive impairment. A significant difference in the behaviours participants engaged in, their well-being and dependency was found between the severe cognitive impairment group and the mild, moderate or no cognitive impairment groups. Dependency and cognitive impairment accounted for 23.9% of the variance in well–ill-being scores and 17.2% of the variance in potential for positive engagement. The current study highlights the impact of severe cognitive impairment and dependency on the behaviours patients engaged in and their well-being. It also affirms the utility of DCM-NR in providing insights into patient experience. Consideration is given to developing DCM-NR as a process that may improve person-centred care in neuroscience settings.

Yes / Introduction: Stigmatising language concerning people living with dementia can cause potentially harmful and dehumanising consequences. Language used about people living with dementia in mental health wards may focus on medical perspectives and suggest custodial relationships with patients rather than person-centred accounts of individuals. This language could have a devastating impact on the provision of person-centred care. This study investigated the relationship between accounts of people living with dementia written in healthcare case notes and clinical practice at three dementia specialist wards in Wales, UK. Language guidance was provided to ward staff to assess whether stigmatising language could be reduced and whether this influenced the provision of person-centred care. Methodology: Dementia Care Mapping was adapted to analyse case note entries for enhancing and detracting accounts of people living with dementia at three data collection points. These were compared to the results of routine DCM observations of care across the three wards. The healthcare case notes of 117 people living with dementia, encompassing 4, 522 entries over ten months were analysed. DCM observations of 38 people living with dementia within the three wards were compared against the case note results. Person-centred language guidance was shared with care staff following each data collection point. Results: Following the provision of person-centered language guidance, the use of personally enhancing language was observed to increase across all three wards. Non-person-centred case note entries predominantly focussed on Labelling language, whilst language concerning Invalidation and Objectification also occurred frequently compared to other DCM domains. Person centred language typically concerned Acknowledgement. A relationship between case note entries and practice was evident in some domains although findings were inconsistent. Discussion and Implications: The findings highlight the importance of addressing stigmatising language in healthcare and suggest that further studies to support the anti-stigma agenda in dementia care are required. / This work was supported by Improvement Cymru, CADR (Centre for Ageing & Dementia Research), Bangor University and the University of Bradford.

This thesis considers the provision of person-centred care (PCC) in acute healthcare. In recent years it has been increasingly recognised that healthcare should be delivered in a person-centred manner and that staff should receive training and support in relation to this. There is a growing body of literature investigating the potential benefits of PCC in relation to both patient and service level outcomes. Paper one of this thesis is a systematic review of the literature examining staff training interventions for improving PCC in acute healthcare settings. The findings offer preliminary support for the positive impact of such training interventions on patient and service level outcomes in hospital environments. The research in this area is not of a uniformly high standard and this paper concludes that further research in this area is required. Paper two is an examination of a modified version of Dementia Care Mapping (Care Mapping – Neurorehabilitation: DCM-NR), an observational tool for measuring and improving PCC. Results provide evidence of the feasibility and validity of DCM-NR in a range of Clinical Neuroscience settings. Future research should examine the impact of DCM-NR on person-centred practices over time.The critical reflection paper considers both the systematic review and the empirical study. It aims to consider both the strengths and limitations of the research, challenges encountered, clinical implications and highlights areas for future research.

Background. Paper I: Published guidelines and policies continually promote the importance of increasing service-user involvement in health care services. Q-methodology has become a popular method for revealing the subjective perspectives of patients who use health services, yet there is currently no review considering the potential issues of using Q-methodology with clinical populations. Paper II: Measuring the quality of care for people using neurorehabilitation services is a complex area requiring reliable methods. Dementia Care Mapping (DCM) is used widely in dementia care settings to help improve person-centred care and with appropriate evaluation may be usefully applied to neurorehabilitation settings. Aims. Paper I [literature review] examined studies which used Q-methodology with clinical populations, with a particular emphasis on the potential adaptations required to ensure its reliable use. Paper II [research study] explored the acceptability views of staff and patients for the pilot use of DCM in a neurorehabilitation setting. Paper III attempted to critically appraise these papers, as well as the research process overall. Methods. Paper I reviewed 29 studies, published over a 20-year period, using a narrative synthesis. Paper II conducted DCM on an acute neurorehabilitation ward, and evaluated the acceptability of DCM using Q-methodology with 23 staff and 10 patients on the ward. Results. Paper I identified a number of considerations for the effective application of Q-methodology with clinical populations. Paper II, reporting on the factor analysis, indicated a 'consensus' viewpoint, where all participants indicated positive acceptability for the use of DCM in a neurorehabilitation setting, with additional factors indicating some potential changes to the tool for increasing acceptability in the future. Paper II also indicated the potential for Q-methodology to be useful with a neurorehabilitation in-patient population. Conclusion. Paper I indicated the potential worth of Q-methodology for use with clinical populations. It also indicated guidelines which researchers might consider when using this method with clinical populations in the future. Paper II revealed promising results for the acceptability of DCM in a neurorehabilitation setting, though further research is required to explore this further. It also confirmed the value of Q-methodology with patients within a neurorehabilitation setting, similarly to those in Paper I. Paper III explored the relevance of Papers I and II in adding to the literature independently, but also the unequivocal link regarding the use of Q-methodology with clinical populations.

Information Technology (IT) plays a vital role in improving health care systems by enhancing the quality, efficiency, safety, security, collaboration and informing decision making. Dementia, a decline in mental ability which affects memory, concentration and perception, is a key issue in health and social care, given the current context of an aging population. The quality of dementia care is noted as an international area of concern. Dementia Care Mapping (DCM) is a systematic observational framework for assessing and improving dementia care quality. DCM has been used as both a research and practice development tool internationally. However, despite the success of DCM and the annual generation of a huge amount of data on dementia care quality, it lacks a governance framework, based on modern IT solutions for data management, such a framework would provide the organisations using DCM a systematic way of storing, retrieving and comparing data over time, to monitor progress or trends in care quality. Data Governance (DG) refers to the implications of policies and accountabilities to data management in an organisation. The data management procedure includes availability, usability, quality, integrity, and security of the organisation data according to their users and requirements. This novel multidisciplinary study proposes a comprehensive solution for governing the DCM data by introducing a data management framework based on a data warehousing approach. Original contributions have been made through the design and development of a data management framework, describing the DCM international database design and DCM data warehouse architecture. These data repositories will provide the acquisition and storage solutions for DCM data. The designed DCM data warehouse facilitates various analytical applications to be applied for multidimensional analysis. Different queries are applied to demonstrate the DCM data warehouse functionality. A case study is also presented to explain the clustering technique applied to the DCM data. The performance of the DCM data governance framework is demonstrated in this case study related to data clustering results. Results are encouraging and open up discussion for further analysis.

No / Over the years there have been advances in the quality of care provision for people with dementia. How to measure the impact of care on the person with dementia has challenged researchers as, until recently, no evaluation tool offered a comprehensive overview of the behaviour patterns and well-being of persons with dementia. Dementia Care Mapping (DCM) is a tool used by care practitioners and researchers to capture both the process (behaviours) and outcome (well-being) of care and is therefore of use as a tool to evaluate quality of care. This study aims to assess, through DCM, the experience of dementia care provision in residential and nursing homes in two voluntary organizations in England. The data illustrates similarities in the well-being and behaviour patterns of 76 persons with dementia living in six care settings throughout England. Examples of instances when people with dementia were "put down" and when well-being was enhanced, are outlined. The homes in the study were meeting the physical care but not the broader psychosocial care needs of the observed residents. The action taken by the organizations as a result of the DCM evaluations is summarized.

No / Introduction Dementia Care Mapping (DCM) was originally developed as a clinical tool but has attracted interest as a potential observational measure of quality of life (QOL) and well-being of long-term care residents with dementia. DCM coding involves continuous observation over a 6-h period, with observers recording a Behavior Category Code (BCC, a recording of activity/interaction) and a Well/Ill Being (WIB) score at 5 min intervals. Method Descriptive data from several different research teams on the distribution and psychometric properties of DCM data were compiled and summarized. Results Issues and problems identified include: complex scoring algorithms, inter-rater reliability of the BCCs, limited variability of WIB values, associations between resident characteristics and DCM assessments, rater time burden, and comparability of results across study settings. Conclusions Despite the identified limitations, DCM has promise as a research measure, as it may come closer to rating QOL from the perspective of persons with dementia than other available measures. Its utility will depend on the manner in which it is applied and an appreciation of the measure's strength and limitations. Possible changes that might improve the reliability, validity, and practicality of DCM as a research tool include coding the predominant event (rather than the best event), shortening the observation period, and adding 0 as a neutral WIB coding option.

No / Objectives This paper describes DCM 8 and reports on the initial validation study of DCM 8. Methods Between 2001-2003, a series of international expert working groups were established to examine various aspects of DCM with the intention of revising and refining it. During 2004-2005 the revised tool (DCM 8) was piloted in seven service settings in the UK and validated against DCM 7th edition. Results At a group score level, WIB scores and spread of Behavioural Category Codes were very similar, suggesting that group scores are comparable between DCM 7 and 8. Interviews with mappers and focus groups with staff teams suggested that DCM 8 was preferable to DCM 7th edition because of the clarification and simplification of codes; the addition of new codes relevant to person-centred care; and the replacement of Positive Events with a more structured recording of Personal Enhancers. Conclusions DCM 8 appears comparable with DCM 7th edition in terms of data produced and is well received by mappers and dementia care staff.