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.

No / Memories on film is the outcome of an 18-month study funded by the National Institute for Health Research’s School for Social Care Research. Based on the principles of Participatory Video (Milne et al 2012), the study used digital storytelling and co-production techniques to create short films with 10 participants in a Leeds dementia care facility. Choice of images and narrative content were decided by the participants, who were aged between 76 and 99 years, and had lived in Leeds for most if not all of their lives. Almost all of them decided to tell the story of their own early life and its defining events, and the participants’ own voices, both speaking and singing, feature on the soundtrack to their films. We made extensive use of local history websites, and archives such as Leodis, when putting the films together. We were particularly keen to find out whether the creation of digital stories with this group of people – who can experience isolation and marginalisation – would help to increase their social participation. As a result we are now interested, not only in discussing the film-making process and the study outcomes, but also in identifying opportunities to have the completed films hosted by other websites and community groups. The summative focus groups for the study identified a number of potential uses for the films, including inter-generational work with schools, staff development initiatives, and raising public awareness.

Yes / Visual sociology often relies for its content on researcher-created or participant-created images. In this article we discuss our use of existing local history archive images in a participatory film-making project with ten people living in residential dementia care in the Northern UK. We draw on the concept of archaeology in two ways: first, as used by Foucault (1972), who contends that archaeology is a metaphor for exploring traces left by the past in order to understand the present. Secondly, in a more obvious sense–many of the most salient cultural references for our participants related to public buildings and local landmarks that had been demolished, repurposed, or dramatically changed in appearance since their youth. / UK National Institute for Health Research – School for Social Care Research

No / This case outlines the rationale and methods used when carrying out ethnographic fieldwork in a care home environment with research participants who were living with a dementia diagnosis. Although concerns had been raised at ethics approval about the use of such methods – visual ethnography in particular – we found that there were ethical benefits for the participants whose capacity for research participation, and for social participation generally, was, in every case, higher than anticipated at the outset. By comparison we found that formal methods for assessing ability to give informed consent often appeared to create excess disability, and to exacerbate ill-being for people with dementia. The case draws on specific examples to show how issues related to methods and to ethical conduct of research are frequently intertwined, and should be considered together rather than in isolation.

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.

In this study, certified nursing assistants (CNAs) who work regularly with long-term care residents with dementia were interviewed to investigate whether they considered providing social and emotional support to people with dementia an important part of their jobs. They were given an online survey, then each participated in an in-person interview that was recorded and later transcribed and analyzed for common themes. Through data analysis, I found that the participating CNAs unanimously considered social support to be an important aspect of caring for someone with dementia, and several personal values were associated with this perspective. They also reported the trainings they had received in preparation for dementia care were largely not sufficient to prepare them for interacting effectively with the residents. Additionally, they cited various other barriers that impede their ability to provide the social support they feel is necessary to provide. Overall, this sample of CNAs did not provide great diversity, and future research should compare these results to more diverse groups.

Within Assisted Living Facilities (ALFs), high staff turnover and the foreseeable future shortage in the workforce population have created a growing urgency to increase the retention of workers in this field. This study examines the experiences of care workers in the dementia care units (DCUs) of ALFs. The specific aims are to learn: 1) what these workers find frustrating and satisfying about their job; and 2) what are the individual-level (e.g., race, education, employment history) and facility-level (e.g., size of unit, workload) factors that affect how they feel about their job. We used qualitative data from interviews with 45 staff and observations gathered in DCUs in five ALFs that varied in size, location, and race of staff. Findings show that workers' sources of dissatisfaction included heavy workloads, lack of teamwork, and residents' racist remarks and other problem behaviors. Positive relationships with residents were a primary source of satisfaction.

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.

Bakgrund: Demenssjukdom är en obotlig progressiv sjukdom som medför olika beteendemässiga förändringar. Sjukdomens ständiga förändringar kräver ökad kunskap och kompetens från hälso- och sjukvård där vårdpersonal står för bemötande och omvårdnad som kan skapa skillnad och betydelse. Hundar i vården med syfte att skapa positiva effekter är en icke farmakologisk behandlingsmetod där aktuell forskning är begränsad. Med detta ansågs det värdefullt att genomföra en litteraturöversikt som undersöker betydelsen av vårdhundar för personer med demenssjukdom. Syfte: Att beskriva betydelsen av hundar i vården för personer med demenssjukdom. Metod: En litteraturöversikt med 13 originalartiklar från databaserna Cinahl Complete, MEDLINE och PubMed enligt Fribergs analysmetod. Resultat: Resultatet visade på positiva effekter vid depression samt välbefinnande för personer med demens. Även fysisk aktivitet och balans förbättrades. Signifikanta känslomässiga skillnader såsom ökad glädje och välbehag samt minskad ångest, oro och sorg uppmärksammades. Effekten av hundar i vården kunde även liknas med taktil massage. Diskussion: Huvudfynden diskuteras med utgångspunkt från Virginia Hendersons teori om vårdens grundprinciper av att tillfredsställa behov. / Background: Dementia is an incurable progressive disease that causes various behavioral changes. The constantly changing nature of dementia requires an increased knowledge and competence level in the care system where care staff supplies treatment and care that can create meaning and make a difference. Dogs in healthcare with the aim of creating positive patient effects are a non-pharmacological treatment method where current research is limited. Therefore it was considered valuable to carry out a literature review examining the importance of care dogs for people with dementia. Aim: To describe the importance of dogs in the care of patients with dementia. Method: A literature review with 13 original articles from the databases Cinahl Complete, MEDLINE and PubMed were used and analyzed using Friberg´s method. Results: The results showed positive effects on depression, well-being, physical activity and balance. Significant emotional differences such as increased joy and overall well-being, reduction in apathetic states as well as reduced anxiety and sadness has been noticed. The effect of dogs in care could be likened to tactile massage. Discussion: The authors discussed and reflected jointly on the main findings of the result based on Virginia Henderson's theory of the basic principles of care to satisfy human needs.