Yes / The reuse of existing datasets to identify mechanisms for improving healthcare quality has been widely encouraged. There has been limited application within dementia care. Dementia Care Mapping (DCM) is an observational tool in widespread use, predominantly to assess and improve quality of care in single organisations. DCM data has the potential to be used for secondary purposes to improve quality of care. However, its suitability for such use requires careful evaluation. This study conducted in-depth interviews with 29 DCM users to identify issues, concerns and challenges regarding the secondary use of DCM data. Data was analysed using modified Grounded Theory. Major themes identified included the need to collect complimentary contextual data in addition to DCM data, to reassure users regarding ethical issues associated with storage and reuse of care related data and the need to assess and specify data quality for any data that might be available for secondary analysis. / This study was funded by the Faculty of Health Studies, University of Bradford.

No / Copying or distributing in print or electronic forms without written permission of IGI Global is prohibited. There is growing emphasis on sharing and reusing dementia care-related datasets to improve the quality of dementia care. Consequently, there is a need to develop data management solutions for collecting, integrating and storing these data in formats that enhance opportunities for reuse. Dementia Care Mapping (DCM) is an observational tool that is in widespread use internationally. It produces rich, evidence-based data on dementia care quality. Currently, that data is primarily used locally, within dementia care services, to assess and improve quality of care. Information-rich DCM data provides opportunities for secondary use including research into improving the quality of dementia care. But an effective data management solution is required to facilitate this. A rationale for the warehousing of DCM data as a technical data management solution is suggested. The authors also propose a data model for a DCM data warehouse and present user-identified challenges for reusing DCM data within a warehouse.

The secondary use of Dementia Care Mapping (DCM) data, if that data were held in a data warehouse, could contribute to global efforts in monitoring and improving dementia care quality. This qualitative study identifies requirements for the secondary use of DCM data within a data warehouse using a user-driven approach. The thesis critically analyses various technical methodologies and then argues the use and further demonstrates the applicability of a modified grounded theory as a user-driven methodology for a data warehouse. Interviews were conducted with 29 DCM researchers, trainers and practitioners in three phases. 19 interviews were face to face with the others on Skype and telephone with an average length of individual interview 45-60 minutes. The interview data was systematically analysed using open, axial and selective coding techniques and constant comparison methods. The study data highlighted benchmarking, mappers’ support and research as three perceived potential secondary uses of DCM data within a data warehouse. DCM researchers identified concerns regarding the quality and security of DCM data for secondary uses, which led to identifying the requirements for additional provenance, ethical and contextual data to be included in a warehouse alongside DCM data to meet requirements for secondary uses of this data for research. The study data was also used to extrapolate three main factors such as an individual mapper, the organization and an electronic data management that can influence the quality and availability of DCM data for secondary uses. The study makes further recommendations for designing a future DCM data warehouse.

The secondary use of Dementia Care Mapping (DCM) data, if that data were held in a data warehouse, could contribute to global efforts in monitoring and improving dementia care quality. This qualitative study identifies requirements for the secondary use of DCM data within a data warehouse using a user-driven approach. The thesis critically analyses various technical methodologies and then argues the use and further demonstrates the applicability of a modified grounded theory as a user-driven methodology for a data warehouse. Interviews were conducted with 29 DCM researchers, trainers and practitioners in three phases. 19 interviews were face to face with the others on Skype and telephone with an average length of individual interview 45-60 minutes. The interview data was systematically analysed using open, axial and selective coding techniques and constant comparison methods. The study data highlighted benchmarking, mappers’ support and research as three perceived potential secondary uses of DCM data within a data warehouse. DCM researchers identified concerns regarding the quality and security of DCM data for secondary uses, which led to identifying the requirements for additional provenance, ethical and contextual data to be included in a warehouse alongside DCM data to meet requirements for secondary uses of this data for research. The study data was also used to extrapolate three main factors such as an individual mapper, the organization and an electronic data management that can influence the quality and availability of DCM data for secondary uses. The study makes further recommendations for designing a future DCM data warehouse.

Aims: The aim of this study was to understand the eating and drinking experiences of people living with dementia and dysphagia in care homes from their perspective and those of their family members, formal care staff and Speech and Language Therapists (SLT). Design and methods: In this multi-method qualitative study, semi-structured interviews were carried out with 14 care home residents, seven family members of people living with dementia and dysphagia, and 13 care home staff with a variety of roles. Structured observations, using Dementia Care Mapping, were carried out with eight people living with dementia and dysphagia. Additionally, focus groups were carried out with a total of 31 SLTs. Data were analysed using thematic analysis. Findings: The findings of this study highlighted the changes experienced by people living in care homes, and those living with dementia and dysphagia, in relation to eating and drinking. In particular an impact on identity was found. This study highlighted the challenges of multiple people being involved in dysphagia care, with unclear roles and responsibilities and ineffective channels of communication. Despite the challenges identified, there were also examples of positive eating and drinking experiences through connections with others and the celebration of meaningful events. Conclusion: This was the first study that sought to explore and understand the eating and drinking experiences of people living with dementia and dysphagia from multiple perspectives. The findings highlight the challenges involved and possible solutions to promote a more person-centred approach to eating and drinking for people living with dementia and dysphagia. / Alzheimer’s Society; Compass Group