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 av Sveriges största folksjukdomar som är vanligast bland personer äldre än 65 år. Sjukdomen medför kognitiv nedsättning, påverkar talförmågan, tidsorienteringen samt påverkar en persons förmåga till aktivitetsutförande som har en direkt koppling till individens upplevda livskvalitet. Arbetsterapeutiska interventioner kan hjälpa till att möjliggöra aktivitersutförandet, förbättra eller bibehålla fysisk och social förmåga öka delaktigheten och bidra till förbättring i upplevd livskvalitet med hjälp av välanpassade interventioner. Syfte: Syftet med studien var att beskriva arbetsterapeutiska interventioner för äldre personer med demens i särskilda boenden och vilken påverkan dessa interventioner har haft på äldres livskvalitet. Metod: Designen för studien var en scoping review med datainsamling från de akademiska databaserna Cinahl, PubMed, Medline och Scopus och litteratur från Google Scholar som resulterade i sammanlagt nio artiklar som inkluderades i studien. Artiklarna analyserades med numerisk och tematisk analys. Resultat: Artiklarna presenterades från olika länder och designen varierade. Majoriteten utav studierna visar på en förbättrad livskvalitet, ökad delaktighet och engagemang samt förbättring i sociala färdigheter bland äldre personer med demenssjukdom på särskilda boenden. Slutsats: Arbetsterapeutiska interventioner för personer med demenssjukdom kan förbättra den upplevda livskvaliteten men det finns ytterligare behov av forskning inom området. / Title: Occupational therapy interventions for improved quality of life among elderly people in dementia units in nursing homes. Background: Dementia is one of Sweden's biggest public diseases, most common in people older than 65. The disease causes cognitive impairment, affects the ability to speak, time orientation and an individual's ability to perform activities. All these symptoms are directly connected to the individual's perceived quality of life. Thus, occupational therapy interventions can help to enable the occupational performance, improve, or maintain physical and social ability and improve perceived quality of life with the help of well-adapted interventions. Purpose: The purpose of the study was to map and describe occupational therapy interventions in nursing homes regarding the impact these have on the quality of life of older people with dementia. Method: The study's design was a scoping review with data collection from the academic databases CINAHL, PubMed, Medline and Scopus and literature from Google Scholar which resulted in a total of nine articles included in the study. The articles were analyzed using numerical and thematic analysis. Results: The articles were presented from different countries, and the design varied. Most of the studies show an improved quality of life, increased participation and commitment, and improvements in social skills among older people with dementia in special housing. Conclusion: Occupational therapy interventions for people with dementia can improve the perceived quality of life but there is a need for further research in the area.

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No / This paper considers the situation of people with dementia who are living in long-term care from two rarely-applied theoretical perspectives. The first, Agamben’s theory of biopolitical life versus bare life, demonstrates that the situation of people with dementia living in care homes or hospitals approximates to that of prisoners, internees and refugees, deprived of full citizenship or biopolitical life. In popular imagery people with dementia are frequently referred to, first in terms of numbers, as a ‘rising tide’, in a way that has historically been used to justify discrimination and social exclusion. In many, care environments it is, moreover, still the case that people with dementia are reduced to a condition of ‘bare life’ only: given little choice, having few rights, lacking freedom of movement, and subjected to almost constant surveillance. In other contexts, such treatment is known to cause or exacerbate many of the problems which – following a biomedical model – are constructed as ‘symptoms of dementia’, such as disorientation in time and space, sleep disturbance, hallucinations and repetitive movement. The second body of theory is Bakhtin’s work on cultural resistance. This demonstrates that many of the so-called ‘challenging behaviours’ manifested by people with dementia, can better be understood as coping, sense-making and self-determining strategies adopted in order to survive within prevailing organisational cultures. Based on a series of studies carried out in intermediate and long-term care since 2009, the paper draws on a range of narrative and film-based examples to demonstrate the ‘courage, humour, fortitude and cunning’ with which, as Walter Benjamin noted, the oppressed have always met the conditions of their oppression. In the process, ‘challenging behaviour’ is given political and ideological meaning, as protest, perpetrated by people who are struggling against extreme odds to be reinstated as full citizens. / Conference website: http://www.aginggraz2017.com/conference-schedule

published_or_final_version / Social Work / Master / Master of Social Work

This study is a mixed-method study that seeks to develop a set of institutional dementia care indicators to evaluate quality of care and inform the improvement of quality of life (QOL) for Taiwanese people with dementia living in care homes. It also uses comparative analysis to compare the different features of policy and its delivery in dementia care between Scotland and Taiwan, a comparison designed to aid the development of dementia care policy, and the establishment of quality indicators for institutional dementia care, in Taiwan. This study employed the person-centred care approach at the micro perspective, and the total quality management (TQM) approach at the macro perspective, in order to inform a seamless care model for people with dementia living in care homes. Data were collected in two stages: comments from experts in dementia care were recorded in an exercise using “Delphi” methodology; subsequently the opinions of service receivers were recorded in a fieldwork exercise. The Delphi exercise (stage one) acted as the pre-test, involving 24 experts in dementia care in Scotland and Taiwan in evaluating the usefulness and applicability of proposed quality indicators for institutional dementia care. Quantitative and qualitative data from the Delphi panel were analyzed. The fieldwork (stage two) collected 237 questionnaires (from 122 residents with dementia and 115 family members) in 14 Taiwanese care homes for people with dementia (including special care units within care homes). The field test data were analyzed using reliability and item analysis, confirmatory factor analysis (CFA), and descriptive and inferential statistics. Initially, 43 proposed quality indicators for institutional dementia care were identified through literature review. However, after two Delphi rounds, only six key dimensions (41 quality indicators) were identified by consensus as the important items for use in measurement of quality of care for people with dementia living in Taiwanese care homes. Through reliability and item analysis, and CFA, this research developed a model which is a three-factor structure (social care, health and personal care, and environment) with 18 quality indicators. The 18 quality indicators have high reliability, validity, and credibility and load onto a second order factor which represents quality of care for people with dementia living in care homes. Further analysis was then conducted to explore how relative ratings on these three factors differed according to measured characteristics of the residents and their family members. In general, only a few strong patterns of difference emerged and multiple linear regression analysis suggested that differences in ratings could not be attributed to influences of socio-economic and socio-demographic differences between respondents. The study concludes that the Delphi method could be used as a methodology for health services research to integrate the opinions of multidisciplinary dementia experts and that CFA is an effective technique to study the empirical factor structure. The findings suggest that the 18 quality indicators could be suitable criteria for people with dementia and their family members to evaluate care quality and select an appropriate care home. The indicators also have important policy implications for the Taiwanese Government and regulations intended to ensure that care homes meet the requirements of service receivers.

The aim of this study was to explore how musicking (a term denoting any music related activity, see Small 1998, p. 9) could be used locally to support people with dementia and their caregivers in a sustainable manner. The data for the study came primarily from a group known as “Song Birds”, a community-based volunteer music group working with people with dementia and their caregivers in the south of England. Participant observation was combined with interviews and an extensive ethnographic study of the music and care world surrounding the group. The data was explored using a grounded theory approach investigating three time phases, “preparation for the events”, “during the events” and “in-between and after the events”. The main findings related to the lay crafting of the events and the emergence of pathways between “music and care nodes” in a local, social network. The preparatory physical and social crafting of Song Birds events created a transitional time and place that guided the participants from everyday life into their collective musicking. This crafting was essential to the success of the musicking and produced inclusive activities that considered the different capabilities of all participants. As a result of these carefully crafted events, dementia identities were temporarily displaced and relationships were transformed. The musical repertoire was an important resource in this crafting and evolved according to the participants’ changing situations. The positive musical benefits and affordances (see DeNora 2000) from such weekly events could be transferred into participants’ everyday lives through multiple music and care groups and the pathways that connected those groups which constituted a “music and care world”. Such musically fostered networks helped generate a virtuous cycle that maintained the music group as a sustainable activity. As dementia care was a long-term activity, such sustainability was important to the on-going community support for people affected by dementia. Community musicking thus allowed people affected by dementia, their relatives and friends to remain together.

La majorité des personnes atteintes de démence en soins de longue durée (SLD) souffre d’une détérioration de la cognition, des interactions sociales, de la santé mentale et de la qualité de vie (QdV). Par conséquent, les proches aidants et les soignants de cette population peuvent éprouver des difficultés, tel que le stress, en raison de la complexité du syndrome. Il s’avère essentiel de valider des interventions psychosociales adaptées à la population atteinte de démence et à ses aidants. La réminiscence, une intervention psychosociale misant sur les capacités résiduelles des personnes atteintes de démence, se fonde sur la remémoration des souvenirs anciens agréables. L’objectif général du mémoire était de valider la mise en œuvre d’une intervention de réminiscence menée par le personnel soignant auprès des personnes atteintes de démence et leurs familles dans un centre de SLD, en faisant appel aux avis experts des soignants et des familles des personnes atteintes de démence dans le contexte d’entrevues. Une évaluation pré-post intervention a permis de mesurer la santé mentale et la QdV des personnes atteintes de démence avant l’intervention, une semaine après et trois mois après l’intervention. Les résultats indiquent que la réminiscence a été bien appréciée par les soignants, les personnes atteintes de démence et leurs familles, et valident sa mise en œuvre en SLD. Des améliorations significatives (Wilcoxon p < 0,025) à court et à long terme ont été observées au niveau de la santé mentale et la QdV des personnes atteintes de démence. / The majority of older adults with dementia living in long-term care (LTC) suffer from a decline in cognition, social interactions, mental health, and quality of life (QoL). As a result, family members and caregivers of this population tend to undergo difficulties, such as stress, due to the complexity of the syndrome. It is therefore essential to validate psychosocial interventions that are suitable for both individuals with dementia and their caregivers. Reminiscence, which involves retrieval of past and pleasurable memories, is a psychosocial intervention that focuses on the residual faculties of individuals with dementia. The overall objective of the thesis was to validate the implementation of a reminiscence intervention led by caregivers for individuals with dementia and their family members in an LTC setting, by collecting the expert opinions of professional caregivers and family members through interviews. Treatment effectiveness was also examined using a pre-post intervention design to measure mental health and QOL of individuals with dementia at baseline, one week after, and three months after intervention. Results indicate that reminiscence was well appreciated by individuals with dementia, caregivers, and family members and validate its implementation in LTC. Findings also show significant short- and long-term improvements (Wilcoxon p < .025) in residents’ mental health and QoL.

La majorité des personnes atteintes de démence en soins de longue durée (SLD) souffre d’une détérioration de la cognition, des interactions sociales, de la santé mentale et de la qualité de vie (QdV). Par conséquent, les proches aidants et les soignants de cette population peuvent éprouver des difficultés, tel que le stress, en raison de la complexité du syndrome. Il s’avère essentiel de valider des interventions psychosociales adaptées à la population atteinte de démence et à ses aidants. La réminiscence, une intervention psychosociale misant sur les capacités résiduelles des personnes atteintes de démence, se fonde sur la remémoration des souvenirs anciens agréables. L’objectif général du mémoire était de valider la mise en œuvre d’une intervention de réminiscence menée par le personnel soignant auprès des personnes atteintes de démence et leurs familles dans un centre de SLD, en faisant appel aux avis experts des soignants et des familles des personnes atteintes de démence dans le contexte d’entrevues. Une évaluation pré-post intervention a permis de mesurer la santé mentale et la QdV des personnes atteintes de démence avant l’intervention, une semaine après et trois mois après l’intervention. Les résultats indiquent que la réminiscence a été bien appréciée par les soignants, les personnes atteintes de démence et leurs familles, et valident sa mise en œuvre en SLD. Des améliorations significatives (Wilcoxon p < 0,025) à court et à long terme ont été observées au niveau de la santé mentale et la QdV des personnes atteintes de démence. / The majority of older adults with dementia living in long-term care (LTC) suffer from a decline in cognition, social interactions, mental health, and quality of life (QoL). As a result, family members and caregivers of this population tend to undergo difficulties, such as stress, due to the complexity of the syndrome. It is therefore essential to validate psychosocial interventions that are suitable for both individuals with dementia and their caregivers. Reminiscence, which involves retrieval of past and pleasurable memories, is a psychosocial intervention that focuses on the residual faculties of individuals with dementia. The overall objective of the thesis was to validate the implementation of a reminiscence intervention led by caregivers for individuals with dementia and their family members in an LTC setting, by collecting the expert opinions of professional caregivers and family members through interviews. Treatment effectiveness was also examined using a pre-post intervention design to measure mental health and QOL of individuals with dementia at baseline, one week after, and three months after intervention. Results indicate that reminiscence was well appreciated by individuals with dementia, caregivers, and family members and validate its implementation in LTC. Findings also show significant short- and long-term improvements (Wilcoxon p < .025) in residents’ mental health and QoL.

Alzheimer’s disease (AD) is the most common form of dementia and affects an individual’s overall cognitive function, including orientation, memory, and executive function. Most AD patients in the United States reside in residential care facilities or private homes under the care of individuals with little education on the challenges of the AD patient. Among the challenges faced by caregivers are behavioral and psychological symptoms related to dementia (BPSD). Education has been shown to improve caregivers’ treatment of BPSD in AD patients and to improve caregiver retention. The purpose of this project was to develop an evidence-based education module guided by Kolcaba’s comfort theory that could be provided to home care nurses who provide care for AD patients with BPSD. A 5-point, 15-item, Likert-scale evaluation survey was developed and administered to a panel of 5 professional content experts who reviewed and scored the educational module for clarity, usability, and applicability. The mean score of 4.6 indicated that the expert panel found the education module to meet the expected standards for use with AD caregivers. Recommendations from the panel of experts were to proceed with the caregiver education module as planned. Implementation of the module may lead to positive social change through the provision of education to caregivers on care of patients with AD and caregiver self-care.