Ann-Charlotte Nedlund

• PhD, MS Public Administration and Economics
• Associate Professor in Political Science at Linköping University

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....

This qualitative study, based on 19 interviews with care managers, explores the experiences of care-managers involved in assessing the need for social services for people with dementia. The study shows that social workers, as care managers, face several dilemmas in their practice concerning people with dementia, in relation to the exchange of infor...

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 pol...

This paper focuses on problem frame differences among actors (members of an advisory body, senior administrators and clinical unit managers) who are concerned with the introduction of new health technology at the regional level in Sweden. It explores issues related to problem framing, puzzling, powering, participation and the various rationales art...

This paper discusses the rights of people with young onset dementia in their everyday lives. It does this by collaborating with co-author Petri, who was diagnosed with dementia whilst of working age. Petri shares his story of navigating the system to find resources for living a good and valuable life with dementia, starting with the challenges he f...

Objective The study’s aim was to better understand how persons, diagnosed with dementia while still working, strived to make sense of and come to terms with their changing everyday lives during the process of exiting work life. Methods The study has an explorative, longitudinal design, following five persons who developed dementia while still work...

Purpose Publicly funded healthcare systems struggle to govern and determine how finite resources should be allocated in relation to political goals within a pre-determined budget. Primary healthcare (PHC) has a central multipurpose function, not least in terms of political strategies, but PHC governance is still largely underexplored. The aim is to...

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 resid...

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...

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...

Background People who develop young onset dementia while they are working face multiple challenges staying in employment. Technology could provide some support for example, scheduling, tracking, and completing tasks, depending on occupation and environment. This study aimed to learn from the experiences of people with young onset dementia. Method...

Background People who develop young onset dementia while they are working face multiple challenges staying in employment. Technology could provide some support for example, scheduling, tracking, and completing tasks, depending on occupation and environment. This study aimed to learn from the experiences of people with young onset dementia. Method...

Background Individuals who develop Young Onset Dementia (YOD) or Mild Cognitive Impairment (MCI) when they are working, experience difficulties completing work tasks. Most legislative guidelines for workplace accommodations, are geared toward physical and mental health problems, and are not easily transferable to individuals with cognitive impairme...

Responsibility for health and care services for people with dementia is often divided between various professionals, agencies, and authorities, causing a fragmentation of care and an unclear division of responsibility between different stakeholders. In relation to this, collaboration and coordination of health and care services are often described...

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 longitud...

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 pal-liative 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 mate...

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 as...

Medicine is organized around specific kinds of patients. In the cross-section of overarching biomedical narratives, international and national regulations and guidelines, and local practices, a particular kind of “ideal” patient is produced. The ideal patient embraces the larger biomedical paradigm, fits standardized diagnostic or treatment protoco...

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 t...

Dementia is a progressive, irreversible neurological disorder that causes changes in cognitive function and behaviour. While at least 5% of people who develop dementia every year are under the age of 65, dementia in the workplace is currently not well recognised or supported. The changes associated with dementia present multiple challenges for indi...

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 healthcar...

This article reports the results of a socio-legal investigation into how continued work among people living with progressive cognitive impairments such as mild cognitive impairment (MCI) or early onset dementia (EOD) can be supported. This study that makes use of empirical data collected in Finland, Sweden and Canada seeks to give voice to people l...

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 treatme...

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 treatme...

Objective As more new- and high-cost treatments become available, there will be a greater need to decide whether the healthcare should withdraw and withhold these treatments from patients or not. When rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatme...

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 experienc...

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 t...

Having opportunities to make decisions and choices regarding one's life is crucial when living with dementia. This inter-disciplinary study draws on the concept of relational autonomy to explore how working-age people living dementia seek to influence their lives, and what makes it easier or more difficult for them in their everyday life. The data...

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-providi...

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 ini...

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...

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 exp...

The number of people with early-onset dementia (EOD) and mild cognitive impairment (MCI) is rising rapidly worldwide. Literature suggests that work can promote social well-being, physical health, and cognitive functioning for this population. However, to date, the majority of technology, services, and policies to support dementia and MCI have been...

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...

Everyday Citizenship and People with Dementia prioritises the ordinary lives of people with dementia, and thereby broadens the agenda towards everyday citizenship. The contributors bring to the fore the idea that a person living with dementia has multiple opinions, identities and a stake in society. The notion of everyday citizenship is used to shi...

The aim of this study is to explore the public's view on the importance of various decision-making components in relation to the reimbursement of drugs aimed at patients with rare diseases, so called orphan drugs. Four focus group discussions were carried out in Sweden. Participants were asked to discuss decision-making components relevant for reim...

Reimbursement of orphan drugs for treatment of rare diseases has become a highly topical issue. Decision-makers are faced with particularly complex and difficult decisions due to urgent patient needs, very high prices and weak scientific evidence. This study aims to explore the challenges with and the solutions for managing reimbursement of orphan...

A highly significant element in politics and policies is the process of constructing, categorizing and imaging – such as categorizing citizens as target groups. In governing documents, distinctions are drawn to distinguish deserving and undeserving categories of citizens. This paper explores the construction of citizenship for people with dementia...

Abstract: This paper explores the practice of evidence-based policy in a Swedish healthcare context. The study focused on how policymakers in the specific working group, the Priority-Setting Group (PSG), handled the various forms of evidence and values and their competing rationalities, when producing the Swedish National Guidelines for heart disea...

The concept of legitimacy is often used and emphasized in the context of setting limits in health care, but rarely described is what is actually meant by its use. Moreover, it is seldom explicitly stated how health-care workers can contribute to the matter, nor what weight should be apportioned to their viewpoints. Instead the discussion has focuse...

Priority settings and limit settings within the publicly financed health care system are necessary and inevitable. These kinds of decisions are often tangent to complicated ethical questions that not always result in order of precedence but also in some cases leads to an exclusion which can imply great consequences for people's life and health. The...

Denna rapport redovisar hur Landstinget i Östergötland, under medverkan av representanter för Institutionen för medicin och hälsa (IMH) vid Linköpings universitet, under åren 2010 till 2012 utvecklade och prövade ett program där forskningsbaserad kunskap sammanställdes och presenterades vid dialogmöten bland kliniska enheter i landstinget. Avsikten...

Hur en prioriteringsprocess organiseras har betydelse både för hälso- och sjukvårdens medarbetare och för allmänheten. Organiseringen ger tydliga signaler till omvärlden vilket kan resultera i en reflektion kring prioriteringsarbetet som medför att detta uppfattas negativt eller positivt. Öppenhet i samband med prioriteringar leder ofta tankarna mo...

I november 2008 beslutade Landstinget Kronoberg att genomföra en process med öppna prioriteringar, som ett inslag av flera i en plan för strategisk utveckling av hälso- och sjukvården mellan 2009 och 2015. PrioriteringsCentrum fick i maj 2009 i uppdrag av landstingsdirektören att genomföra en uppföljning av Landstinget Kronobergs arbete med priorit...

Under senare år har ”rättvisa” procedurer alltmer kommit att uppmärksammas som ett sätt att stärka legitimiteten vid prioriteringar. Vad som avses är utformningen av beslutsprocessen och betydelsen av denna för uppfattningen av ett fördelningsbeslut. Daniels och Sabins förslag till strategi för att stärka uppfattningen om rättvisa vid prioritering...