The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

Consolidating political leadership in healthcare: a mediating institution for priority-setting as a political strategy in a local health system.

The allocation of resources is a crucial part of political decision-making in healthcare, but explicit priorities are rarely set when resources are distributed. Two areas that have received some attention in research about legitimacy and priority-setting decisions in healthcare are the role of technical expert agencies as mediating institutions and the role of elected politicians. This paper investigates a political priority-setting advisory committee within a regional authority in Sweden. The aim is to explore how a political body can serve as a mediating institution for priority-setting in healthcare by disentangling the arrangements of its work in terms of what role it performs in the organisation and what it should do. The findings illustrate that promoting the notion of explicit priority-setting and the political aspects inherent in priority-setting in political healthcare management can contribute to consolidating political governance and leadership. There is, however, a complex tension between stability and conflicting values which has implications for the role of politicians as citizens' democratic representatives. This paper enhances our understanding of the role of mediating institutions and political properties of healthcare priority-setting, as well as our understanding of political and democratic healthcare governance in local self-government.

Nurses' priority-setting for older nursing home residents during COVID-19.

BACKGROUND: Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses' prioritizations in their work to achieve well-being and health for nursing home residents. AIM: The aim of this study was to explore nursing home nurses' priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. ETHICAL CONSIDERATIONS: Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). FINDINGS: We identified an overarching theme-nursing home nurses struggling on multiple fronts, "just do it"-and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives' expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. CONCLUSIONS: Nurses' priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses' priorities. Nursing home nurses need organizational and managerial support to prioritize.

What happens when people develop dementia whilst working? An exploratory multiple case study.

PURPOSE: This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them. METHODS: A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach. RESULTS: The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants' experiences. CONCLUSIONS: Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.

How health care professionals handle limited resources in primary care - an interview study.

INTRODUCTION: Health care systems around the world are struggling with limited resources, in relation to the prevailing health care need. An accessible primary care is an important part of the solution for how to provide affordable care for the population and reduce pressure on the overall health care system such as unnecessary hospital stays and associated costs. As primary care constitutes an important first line of healthcare, the task of prioritising and deciding what to do and for whom lies in practice, primarily with the primary care professionals. Thus, the decisions and behaviour of primary care professionals have a central role in achieving good and equal health in the population. The aim of this study is to explore how primary health care professionals handle situations with limited resources and enhance our knowledge of priorities in practice.  METHODS: Semi-structured interviews with 14 health care professionals (7 nurses, 7 physicians) working in Swedish primary care were interviewed. Data were analysed inductively with content analysis. FINDINGS: Three main categories were found: Influx of patients; Structural conditions; and Actions. Each category illustrates an important aspect for what primary care professionals do to achieve good and equal care. The influx of patients concerned what the professionals handled in terms of patients' healthcare needs and patient behaviour. Structural conditions consisted of policies and goals set for primary care, competence availability, technical systems, and organisational culture. To handle situations due to limited resources, professionals performed different actions: matching health care needs with professionals' competency, defining care needs to suit booking systems appointments, giving care at the inappropriate health care level, rearranging workhours, and passing on the decision making. CONCLUSION: Priorities in primary care are not, "one fits all" solution. Our study shows that priorities in primary care comprise of ongoing daily processes that are adapted to the situation, context of patient influx, and structural conditions. Healthcare professional's actions for how influx of patients' is handled in relation to limited resources, are created, and shaped within this context which also sets the boundaries for their actions.

Policy Narratives on Palliative Care in Sweden 1974-2018.

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life.

The introduction of a value-based reimbursement programme-Alignment and resistance among healthcare providers.

Reimbursement programmes are used to manage care through financial incentives. However, their effects are mixed and the programmes can motivate behaviour that goes against professional values. Value-based reimbursement programmes may better align professional values with financial incentives. The aim of this study is to analyse if and how healthcare providers adapt their practices to a value-based reimbursement programme that combines bundled payment with performance-based payment. Forty-one semi-structured interviews were conducted with representatives from healthcare providers within spine surgery in Sweden. Data were analysed using thematic analysis with an abductive approach and a conceptual framework based on neo-institutional theory. Healthcare providers were positive to the idea of a value-based reimbursement programme. However, during its introduction it became evident that some aspects were easier to adapt to than others. The bundled payment provided a more comprehensive picture of the patients' needs but to an increased administrative burden. Due to the financial impact of the bundled payment, healthcare providers tried to decrease the amount of post-discharge care. The performance-based payment was appreciated. However, the lack of financial impact and transparency in how the payment was calculated caused providers to neglect it. Healthcare providers adapted their practices to, but also resisted aspects of the value-based reimbursement programme. Resistance was mainly caused by lack of understanding of how to interpret and act on new information. Providers had to face unfamiliar situations, which they did not know how to handle. Better IT-facilitation and clearer definition of related care is needed to strengthen the value-based reimbursement programme among healthcare providers. A value-based reimbursement programme seems to better align professional values with financial incentives.

Collaboration and coordination of health and care services for older people with dementia by multidisciplinary health and care providers: a scoping review protocol.

INTRODUCTION: Collaboration and coordination of health and care services are key to catering for the diverse needs of a growing population of older people with dementia. When multidisciplinary health and care providers work together, they have the possibility to use resources in a fair, accurate and effective way and thereby do the right thing, at the right time, for the right individual. The aim of this scoping review is to map how different care-providing agencies collaborate and coordinate health and care services for older people with dementia. METHODS AND ANALYSIS: A scoping review will be carried out following the proposed methodology by Joanna Briggs Institute and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-Scoping Review Extension guidelines. Systematic searches will be carried out in scientific databases. Studies published within the last 10 years will be included based on certain eligibility criteria. All included studies will be critically appraised using the Research Pyramid. Data from included studies will be charted and subjected to content analysis. ETHICS AND DISSEMINATION: Ethics approval is not required for scoping reviews. The dissemination of findings will be conducted through conference presentations and publication in international scientific journals.

Withdrawing or withholding treatments in health care rationing: an interview study on ethical views and implications.

BACKGROUND: When rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a 'grandfather clause' when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians' and patient organization representatives' experiences- and perceptions of withdrawing and withholding treatments in rationing situations of relative scarcity. METHODS: Fourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used. RESULTS: Participants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients' need for treatment (e.g., the treatment's effectiveness and the patient's medical condition) withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers. CONCLUSIONS: We conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatment's effect, and to provide guidelines on a national level.

The patient as a policy problem: Ambiguous perceptions of a critical interface in healthcare.

The interface between the patient and the health service has changed, which constitutes a potential problem for various policy-makers. Using a critical policy perspective and drawing on the theory of problem framing, this paper explores how actor groups with different responsibilities perceive the patient as a constructed policy problem. This is a qualitative study where data consists of single episode interviews with healthcare politicians, senior administrators, service strategists, and unit mangers from one regional health authority in Sweden. A thematic content analysis of the interviews was carried out in accordance with "the framework approach". The study illustrates how the actors interpret their reality using diverse problem frames. This becomes more visible when the framing is disentangled with regard to what perspective they employ in relation to different accounts: society or the individual, or the (healthcare) system or the (healthcare) professional. The actor groups are part of the same institutional context, which explains certain tendencies of similarities in terms of the accounts being used, but still they approach the constructed problem differently which is visible as shifts-scaling up and down-between different accounts. By analyzing and structuring the various problem frames (including its policy styles) we can enhance our knowledge about how those responsible for the governance of healthcare approach the patient as a policy problem, as something that concerns only the patient and/or the provider, or as something that needs to be addressed in broader strategic terms.

Self-initiated management approaches in everyday occupations used by people with acquired cognitive impairment.

BACKGROUND: Striving to cope with day-to-day challenges is a basic human behaviour. Self-initiated management approaches provide a resource that has yet to be discovered and systematically used in occupational therapy practice. This resource might be especially important for people with dementia who are less likely to adopt management approaches initiated by others. AIMS/OBJECTIVES: Based on the findings of former studies on management and problem-solving actions among people with cognitive impairment, this article aims to identify and categorize the study participants' self-initiated management approaches and how these may be manifested in strategies in everyday occupations. MATERIAL AND METHODS: The study utilized a form of meta-synthesis; an aggregated analysis, where findings from 11 studies published 2004-2020 were compared and categorized, incorporating the views of participants with dementia/mild cognitive impairment, or acquired brain injury. RESULTS: Thirty strategies were identified and grouped into seven categories of management approaches, used in a variety of everyday occupations and situations. A majority of the strategies were found in both populations, suggesting that management approaches are more similar than different across populations with cognitive impairment. CONCLUSIONS AND SIGNIFICANCE: Attending to the rich variation of self-initiated management approaches/strategies among persons with cognitive impairment offers possibilities for developing occupational therapy interventions.

Working towards inclusion: Creating technology for and with people living with mild cognitive impairment or dementia who are employed.

Earlier diagnosis and longer working careers is resulting in more individuals being identified as having Mild Cognitive Impairment or Early Onset Dementia (MCI/EOD) when they are still in the workforce. While there is growing interest in the dementia research community and beyond to develop technologies to support people with dementia, the use of technology for and by people with MCI/EOD in the workplace has had very little attention. This paper presents a two-part study involving interviews and participatory sessions to begin to understand the workplace experiences and the role of technology among people living with MCI/EOD. We present our findings from working with seven people with MCI/EOD and two care partners to explore technology design. Our results indicate several similarities as well as a few differences between MCI/EOD and later-onset dementia with respect to challenges using technology and design considerations for supporting engagement and use of technology. Lessons learned through the process of working with people with MCI/EOD through participatory methods is presented along with recommendations to foster an inclusive, respectful, and empowering experience for participants with MCI/EOD.

Centrality and compatibility of institutional logics when introducing value-based reimbursement.

PURPOSE: Using financial incentives has been criticised for putting too much focus on things that can be measured. Value-based reimbursement may better align professional values with financial incentives. However, professional values may differ between actor groups. In this article, the authors identify institutional logics within healthcare-providing organisations. Further, the authors analyse how the centrality and compatibility of the identified logics affect the institutionalisation of external demands. DESIGN/METHODOLOGY/APPROACH: 41 semi-structured interviews were conducted with representatives from healthcare providers within spine surgery in Sweden, where a value-based reimbursement programme was introduced. Data were analysed using thematic content analysis with an abductive approach, and a conceptual framework based on neo-institutional theory. FINDINGS: After the introduction of the value-based reimbursement programme, the centrality and compatibility of the institutional logics within healthcare-providing organisations changed. The logic of spine surgeons was dominating whereas physiotherapists struggled to motivate a higher cost for high quality physiotherapy. The institutional logic of nurses was aligned with spine surgeons, however as a peripheral logic facilitating spine surgery. To attain holistic and interdisciplinary healthcare, dominating institutional logics within healthcare-providing organisations need to allow peripheral institutional logics to attain a higher centrality for higher compatibility. Thus, allowing other occupations to take responsibility for quality and attain the feeling of professional pride. ORIGINALITY/VALUE: Interviewing spine surgeons, physiotherapists, nurses, managers and administrators allows us to deepen the understanding of micro-level behaviour as a reaction (or lack thereof) to macro-level decisions.

Dying as an issue of public concern: cultural scripts on palliative care in Sweden.

In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve "good palliative care". The aim of this study has been to analyse how experts make sense of the development and the current state of palliative care. Departing from this aim, focus has been on identifying how personal experiences of 'the self' are intertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliative care. Twelve qualitative interviews were conducted. Four scripts were identified after analysing the empirical material: 1. script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain definitions. The findings of this study illustrate how experts in complex ways intertwine experiences of 'the self' with meta-levels concepts in order to make sense of the field of palliative care. The participants did not endorse one "right way" of "good" deaths. Instead, palliative care was considered to be located in a complex state where the historical development, consisting of both desirable ideals, death denials and lack of guidelines, and more recent developments of strives towards universal concepts, "improvement" and increased bureaucracy altogether played a significant role for how palliative care has developed and is organised and conducted today.

To live with a wagging tailed assistant - Service and hearing dog ownership from the perspective of Swedish owners.

Individuals who have a functional or health impairment, are often in great need of conventional healthcare, social care and support, as well as help from family and friends. The use of dogs may be an important assistive support for this population. Assistance dogs are trained to assist with their owners' specific needs. The aim of this study is to explore service and hearing dog ownership from the owner´s perspective, by examining the owner's expectations before training a dog, and experiences after having a certified dog. This study was designed as a longitudinal intervention study with pre-post design. The participants included in the study trained their own dogs to become service or hearing dogs. A number of open-ended questions were answered by the participants before the training of the dog started, three months after the dog was certified, and 1-3 years after the first follow-up. Data were analysed using thematic content analysis. The participants' expectations of what the dog would contribute after being certified was high. Their perceived experiences in many ways reflected their expectations. For example, they perceived that the dog contributed to improved health status, a more active lifestyle, improved ability to feel secure, and that they had become more independent. They also felt that the dog had strengthened their social relationships. Negative experiences were also identified. Not being allowed to bring their dog into public places and negative attitudes from other people were examples of this. This study shows that individuals being supported by an assistance dog experience the dog as an invaluable help in their everyday life. By improving the owners' lives in many ways, a certified service or hearing dog is a novel and important assistive support for people with a functional or health impairment.

Health promotion initiative: A dementia-friendly local community in Sweden.

Dementia is a great public health concern worldwide. Despite this, little is known from a health-promoting perspective about dementia in general as a public health issue, in dialog with people living with dementia, applicable at individual, group, and societal levels with regard to policies and practice. This study therefore aims to explore the experiences related to living with dementia in the local community by advancing a health-promoting perspective. Semi-structured individual and group interviews were conducted with participants (n = 22) with lived, professional, and personal experiences of dementia living in a medium-sized municipality in Sweden. Transcripts were analyzed by thematic analysis. Four themes emerged: health promotion through knowledge and public awareness, health promotion through opportunities to be active, health promotion through meaningful meeting places, and health promotion through improvements in the welfare system. We found that more knowledge and public awareness about dementia are needed to advance a health-promoting perspective and increase the prominence of dementia as a public health issue. Further research and policy need to focus more on how professionals in dementia care practice could be involved in promoting health and well-being for people with dementia.

Political strategies in difficult times - The "backstage" experience of Swedish politicians on formal priority setting in healthcare.

This paper contributes to the knowledge on the governing of healthcare in a democratic context in times of austerity. Resource allocation in healthcare is a highly political issue but the political nature of healthcare is not always made clear and the role of politicians is often obscure. The absence of politicians in rationing/disinvestment arrangements is usually explained with blame-shifting arguments; they prefer to delegate "the burden of responsibility" to administrative agencies or professionals. Drawing on a case where Swedish regional politicians involved themselves in setting priorities at a more detailed level than previously, the findings suggest that the subject of "blame avoidance" is more complicated than usually assumed. A qualitative case study was designed, involving semi-structured interviews with 14 regionally elected politicians in one Swedish health authority, conducted in June 2011. The interviews were analysed through a thematic analysis in accordance with the "framework approach" by Ritchie and Lewis. Findings show that an overarching strategy among the politicians was to appear united and to suppress conflict, which served to underpin the vital strategy of bringing the medical profession into the process. A key finding is the importance that politicians, when appearing "backstage", attach to the prevention of blame from the medical profession. This case illustrates that one has to take into account that priority settings requires various types of skills and knowledges - not only technical but also political and social. Another important lesson points toward the need to broaden the political leadership repertoire, as leadership in the case of priority setting is not about politicians being all in or all out. The results suggest that in a priority-setting process it is of importance to have politics on-board at an early stage to secure loyalty to the process, although not necessarily being involved in all details.

To protect and to support: How citizenship and self-determination are legally constructed and managed in practice for people living with dementia in Sweden.

Since living with dementia implies increasing difficulties in taking charge of rights due to cognitive as well as communicative impairments, many people with dementia are vulnerable and in need of support in order to realize full citizenship. In Sweden, all adults right to self-determination is strongly emphasized in law, regulations, and policies. Further, and in contrast to the situation in many other countries, people living with dementia cannot be declared as incompetent of making decisions concerning social care and their right to self-determination cannot legally be taken away. The article shows that in the Swedish welfare system, the focus is more on protecting the self-determination of citizens than on supporting people in making decisions and exercising citizenship. Subsequently, this causes legally constructed zones of inclusion and exclusion. This article examines and problematizes how different institutional contexts, legal constructions, norms, and practices in Sweden affect the management of issues concerning guardianship, supported decision-making and self-determination, and outline the implications for people living with dementia.

Crafting citizen(ship) for people with dementia: How policy narratives at national level in Sweden informed politics of time from 1975 to 2013.

This article explores how policy narratives in national policy documents in Sweden inform associated politics on people with dementia. This is disentangled in terms of how people with dementia have been defined, what the problems and their imminent solutions have been, and if and how these have differed over time. Based on a textual analysis of policy documents at national level in Sweden, covering nearly 40 years the study shows how divergent policy narratives shape the construction of citizens with dementia as policy target groups. This study shows the temporal character of people with dementia as a political problem, the implications of policy narratives on people with dementia as a citizen group, and policy narratives as something being crafted rather than shaped by fixed pre-existing "facts". Dementia, and further citizens living with dementia, does not have a once and for all stabilised meaning. Instead, the meanings behind the categories continue to evolve and to be crafted, which affects the construction of citizens living with dementia, the space in which to exercise their citizenship and further belonging to the society.