Throughout Europe the most damaging consequences of the coronavirus have fallen disproportionately on older people who live in care homes. This study involves the analysis of secondary data sources relating to deaths, and related harms, in European care homes from seven countries between March and December 2020. The findings are reviewed using the framework of the European Convention on Human Rights to identify examples of human rights violations - namely the right to life, liberty and security, respect for private and family life, and prohibition of torture, and general prohibition of discrimination. A significant contributing factor to the scale and nature of deaths and harms is the abject disregard of older people's human rights. Based on the findings, the authors, a group of social work academics, call for an urgent re-examination of the role of social work in relationship to care homes and the importance of re-engaging with human rights issues for care home residents.

Living with dementia, care and social care systems The aim of this article is to find out what impact national guidelines have on municipality dementia care. Furthermore, the aim is to compare organization of social care to the local adaptation of nationally invoked values. This article is connected to Living with dementia, care and social care systems , an interdisciplinary project between Health Sciences at Lund University and Social Sciences at Linnaeus University. The national guidelines for care and services to people with dementia recommend specialized units, and professional specialization in dementia care. Based on values of self-determination, integrity, accessibility, equity, rights and safety, they are meant to guide the dementia care in the community. In this article the organization of care is compared to how nationally invoked values are discussed in local policy documents in nine municipalities. These two aspects of dementia care are central to the national guidelines. The organization of care was explored by a mapping study of 19 municipality services. Type of organization was determined based on when, throughout the progression of the disease, services were made available, the existence of specialized dementia care units, and level of professional specialization. Information about values in local policies was examined by utilizing policy as discourse analysis of local policy documents. Four types of relationships between organization and value implementation were found. Eight out of nine municipalities failed to adapt to both aspects of the national guidelines.

This article addresses the dilemmas concerning legislation, individual autonomy and the reality of everyday life for people coping with dementia. We describe and analyse decision-making in relation to older people with dementia in Sweden, within the area of social work regulated by the Social Services Act and the Parental Act. Swedish legislation is based on the individual's autonomy and capacity to consent to services without anyone having legal authority to decide on behalf of the individual. Based on data from interviews with family caregivers living at home, decision-making through family caregivers is discussed and formal guardianship is also considered. Swedish legislation leaves individuals with dementia and family caregivers in a vacuum between self-determination and full autonomy with the ideal of citizenship emphasised and recognised in the Social Services Act on the one hand, and on the other, a strong need for support in everyday life and with decision-making.

This thesis addresses dementia care in Sweden and the function family caregivers are given. The aim of the thesis is to analyse critically the system of municipal eldercare and the function of family caregivers in this system, and in various types of organisations. In the thesis, both organisational perspectives and the experiences of family caregivers are in focus. Eldercare has been a focus of the welfare state from its early days. Throughout the years both the organisation of care and the understanding of responsibility between family and state has changed several times. Today, family caregivers in Sweden have no formal responsibility for people with dementia, but many family caregivers still take on a caregiver responsibility. This raises questions about the function family caregivers play in dementia care and the reasons behind the choice of caregiving. The thesis consists of four papers on which a cumulative analysis was made. The empirical material is based on interviews with 146 family caregivers, of which 55 answered additional questions. Furthermore, a mapping study of activities and professional specialisation was used to study variations between municipalities. Text material was also utilised, both in the form of policies and formal documentation on a municipal level, and on research on family caregiving in dementia care on a national level. The cumulative analysis was made from the perspective of critical systems theory and resulted in three paradoxes: The welfare paradox, the value paradox and the responsibility paradox. The paradoxes are closely connected, and limit agency among family caregivers. Opposition in processes of familisation (the welfare paradox), individual values rather than family values (the value paradox), and the limitations in factual choice in taking on a caregiver responsibility (the responsibility paradox) cooperate in shaping the function of family caregiving and simultaneously limiting family caregiver agency. Since it is in the interest of dementia care to involve family caregivers the paradoxes also contribute to a solution to challenges in dementia care.

The methodology from the RightTimePlaceCare study of dementia care was tested locally in terms of relevance, acceptability and attrition. Comparing persons with dementia (PwDs) receiving home care (HC) with PwDs living in nursing homes (NHs), in urban versus rural areas, regarding their health conditions and informal caregiver burden was also done. Standardized measurements regarding sociodemographic, and physical and mental health was used. Questions related to legal guardianship were added. Interviews were conducted with PwDs and their caregivers in HC (n = 88) and in NHs (n = 58). Bivariate and multivariate logistic regression analysis was used. The attrition rate was higher in HC. In the bivariate regression model, for HC and NH, living at home was significantly associated with more severe neuropsychiatric symptoms (p <= 0.001) and being cared by a spouse (p = 0.008). In NH, the informal caregivers were significantly younger (p = 0.003) and living in rural areas (p = 0.007) and more often in paid work (p <= 0.001). In the multivariate regression model, informal caregivers were significantly younger (p = 0.007) when caring for a PwD in an NH and caregiver burden was significantly higher in HC and in urban areas (p = 0.043). Legal guardianship was very low. Professionals should acknowledge that PwDs in HC have more behavioural problems and caregivers in urban areas report higher caregiver burden.

The aim of this study was to examine whether professional collaboration in home health care is associated with clear boundaries between principals' areas of responsibility and the professions areas of responsibility, respectively. Data were derived from a web-based survey that was carried out in one county in the middle of Sweden during spring 2013. Participants were health professionals and managers from the county council and from all the municipalities in the county. Both structured and open-ended questions were utilised. A total of 421 individuals (90% women) answered the structured questions, and 91 individuals (22% of the 421) answered the open-ended questions. Quantitative data were analysed with descriptive statistics methods, tests of independence and of correlation strength. Qualitative data were analysed with content analysis. The results from the structured questions showed that well-functioning collaboration was associated with clear boundaries between principals in the county overall, and for respondents in two of three parts of the county. Association between clear boundaries between professions and well-functioning collaboration was found in the county overall among the municipality population. However, in one part of the county, we did not find any correlations between well-functioning collaboration and clear boundaries between professions or principals, with the exception of home help services. The analysis of the open questions gave similar results as the quantitative analysis, illustrated within three themes: The significance of concepts, trust and interdependence, and collaboration as a means for well-being. The results indicate that, recently after an organisational change, clear boundaries between the principals' areas of responsibility and professions' area of responsibility respectively are necessary for effective cooperation between professionals. If the organisation and professionals have previous positive experience of colocated activities, clear boundaries do not share the same importance.

BackgroundIn dementia care, it is crucial that the chain of care is adapted to the needs of people with dementia and their informal caregivers throughout the course of the disease. Assessing the existing dementia care system with regard to facilities, availability and utilization may provide useful information for ensuring that the professional dementia care and service system meets the needs of patients and their families from disease onset to end of life.MethodsThe aim of this study was to further develop and test a mapping system, and adapt it to a local context. In addition, the aim was to assess availability and utilization of care activities as well as professional providers' educational level in nine municipalities under the categories of Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care. This cross-sectional study was conducted in April through May 2015. Data was derived from the health care and social service systems in nine rural and urban municipalities in two counties in Sweden. The mapping system covered seven categories with altogether 56 types of health care and social service activities.ResultsThe mapping system was found to be reliable with minor adaptations to the context mainly in terms of activities. Availability of care activities was common with low utilization regarding Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care and dementia trained staff was rare. Availability and utilization of care activities and professionals' educational level was higher concerning screening, the diagnostic procedures and treatment compared with outpatient care facilities, institutional care and palliative care.ConclusionsThe mapping system enables policy makers and professionals to assess and develop health care and social service systems, to be offered proactively and on equal terms to people with dementia and their informal caregivers throughout the course of the disease. The educational level of professionals providing care and services may reveal where, in the chain of care, dementia-specific education for professionals, needs to be developed.

Purpose The purpose of this paper is to explore the lived experiences of adapting to care dependency among adults receiving health and social care in ordinary housing. Design/methodology/approach This was done by conducting a phenomenological study by interviewing ten adults, receiving home care services in ordinary housing. Findings Participants not only adapted by becoming a ?good patient? but they had four strategies they used: sociability, distance, competence and compliance, contributing to a sense of dignity and personal safety. Research limitations/implications Further research is needed regarding how to preserve quality of care with adults with various ways of adapting to care dependency. Practical implications The relationship between professionals and adults in care dependency is a dynamic process where a need for understanding different modes of adaptation is vital. Good treatment and quality care may be different things to different adults, depending on what aspects of the process of adaptation concern them the most, and depending on their individual adaptation strategy. Originality/value This paper contributes to the understanding of modes of adaptation to care dependency from the perspective of adults indicating that working person centered may include respecting strategies not traditionally being associated with ?the good patient.?

Background: According to Swedish legislation, all citizens have equal rights to receiving care and services when needed. National guidelines have been developed in order to secure regimentation, quality and clarity in the management of dementia care and services and other prioritized fields.   

Aim: The aim of this ongoing study is to describe and analyse differences and similarities in care and services towards citizens with dementia. Further, the aim is to discuss possible reasons for differences and similarities.   

Methods: A mapping study was conducted in nine Swedish municipalities. It covered 56 possible services, either generalized or specialized in the field of dementia or geriatric psychiatry. Specialization in terms of professional education was also covered. Approval of the study was granted by the regional Ethics committee in Lund (2010/538 and 2014/168).

Results: Several differences were found between municipalities. Hence, the care and services provided aren’t equal between municipalities. An explanation may be found in the institutional logics used to explain and choose local priorities.