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  • 1.
    Brorsson, Anna
    et al.
    Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Öhman, Annika
    Karolinska Institutet, Sweden .
    Lundberg, Stefan
    The Royal Institute of Technology, Sweden .
    Nygård, Louise
    Karolinska Institutet, Sweden .
    Accessibility in public space as perceived by people with Alzheimer's disease.2011In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 10, 587-602 p.Article in journal (Refereed)
    Abstract [en]

    Most people with dementia remain living at home as long as possible after being diagnosed, and hence their lives also include activities in the public space. The aim of this study was to illuminate experiences of accessibility in public space in people with Alzheimer’s disease. A qualitative grounded theory approach with repeated in-depth interviews was used. The core category, accessibility as a constantly changing experience, was characterized by changes in the relationship between informants and public space. Changes in the relationship took place in activities and use of place and related to familiarity and comfort, individual motives and interests, and planning and protecting. Other changes occurred in places and problematic situations related to everyday technologies, crowded places with high tempo and noise, and change of landmarks. These changes reduced feelings of accessibility and increased difficulties in carrying out activities in public space. These findings may be helpful when providing support, and supporting community living.

  • 2.
    Brorsson, Anna
    et al.
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Sweden .
    Öhman, Annika
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Department of Social and Welfare Studies, Division of Occupational Therapy. Linköping University, Faculty of Medicine and Health Sciences.
    Lundberg, Stefan
    School of Technology and Health, The Royal Institute of Technology, Sweden .
    Nygård, Louise
    Department of Neurobiology, Care Sciences and Society, Division of Occupational Therapy, Karolinska Institutet, Sweden .
    Being a pedestrian with dementia: a qualitative study using photo documentation and focus group interviews.2016In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 15, no 5, 1124-1140 p.Article in journal (Refereed)
    Abstract [en]

    The aim of the study was to identify problematic situations in using zebra crossings. They were identified from photo documentations comprising film sequences and the perspectives of people with dementia. The aim was also to identify how they would understand, interpret and act in these problematic situations based on their previous experiences and linked to the film sequences.

    A qualitative grounded theory approach was used. Film sequences from five zebra crossings were analysed. The same film sequences were used as triggers in two focus group interviews with persons with dementia. Individual interviews with three informants were also performed.

    The core category, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus, showed how a problematic situation as a whole consisted of different layers of problematic situations. The first category, adding layers of problematic traffic situations to each other, was characterized by the informants’ creation of a problematic situation as a whole. The different layers were described in the subcategories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. The second category, actions used to meet different layers of problematic traffic situations, was characterized by avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being cautious pedestrians.

    In conclusion, as community-dwelling people with dementia commonly are pedestrians, it is important that health care professionals and caregivers take their experiences and management of problematic traffic situations into account when providing support.

  • 3.
    Ekström, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Arts and Sciences.
    Ferm, Ulrika
    Sahlgrenska University Hospital, Sweden.
    Samuelsson, Christina
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science.
    Digital communication support and Alzheimer’s disease2017In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 16, no 6, 711-731 p.Article in journal (Refereed)
    Abstract [en]

    Communication is one of the areas where people with dementia and their caregivers experience most challenges. The purpose of this study is to contribute to the understanding of possibilities and pitfalls of using personalized communication applications installed on tablet computers to support communication for people with dementia and their conversational partners. The study is based on video recordings of a woman, 52 years old, with Alzheimer’s disease interacting with her husband in their home. The couple was recorded interacting with and without a tablet computer including a personalized communication application. The results from the present study reveal both significant possibilities and potential difficulties in introducing a digital communication device to people with dementia and their conversational partners. For the woman in the present study, the amount of interactive actions and the number of communicative actions seem to increase with the use of the communication application. The results also indicate that problems associated with dementia are foregrounded in interaction where the tablet computer is used.

  • 4.
    Ericsson, Iréne
    et al.
    Jönköping University, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Kjellström, Sofia
    Jönköping University, Sweden.
    Sliding interactions: An ethnography about how person with dementia interacts in special housing for elderly2011In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 10, no 4, 523-538 p.Article in journal (Refereed)
    Abstract [en]

    This ethnography describes how persons with dementia interact with cognitively intact persons in housing with care for the elderly. The results, drawing upon 31 observation sessions and nine interviews, are described under the following themes, which were interpreted from the standpoint of social interaction theory: interaction with expression of satisfaction, disorientation, and dissociation. Interaction provided satisfaction, but did not always reflect a positive experience. Awareness in persons with dementia seemed to be greater than others perceived and, as a result, interaction was adversely affected by frequent well-intentioned corrections and comments. Participation in interaction can be encouraged and feelings of indignation avoided  by assuming that persons with dementia are aware of their situation and how others behave toward them. Sensitivity is required to interpret individuals' expressions of desire not to participate, while simultaneously it is important to try to interpret why they want to refrain.

  • 5.
    Ericsson, Iréne
    et al.
    Jönköping University, Sweden.
    Kjellström, Sofia
    Jönköping University, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Creating relationships with persons with moderate to severe dementia2013In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 1, 63-79 p.Article in journal (Refereed)
    Abstract [en]

    The study describes how relationships are created with persons with moderate to severe dementia. The material comprises 24 video sequences of Relational Time (RT) sessions, 24 interviews with persons with dementia and eight interviews with professional caregivers. The study method was Constructivist Grounded Theory. The categories of 'Assigning time', 'Establishing security and trust' and 'Communicating equality' were strategies for arriving at the core category, 'Opening up', which was the process that led to creating relationships. Both parties had to contribute to create a relationship; the professional caregiver controlled the process, but the person with dementia permitted the caregiver's overtures and opened up, thus making the relationship possible. Interpersonal relationships are significant to enhancing the well-being of persons with dementia. Small measures like RT that do not require major resources can open paths to creating relationships.

  • 6.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal University College, Sweden; Karolinska Institutet, Sweden.
    Hansebo, Görel
    Ersta Sköndal University College, Sweden; Karolinska Institutet, Sweden.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Sweden; Karolinska Institutet, Sweden.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Norberg, Astrid
    Ersta Sköndal University College, Sweden; Umeå University, Sweden.
    How people with Alzheimer's disease express their sense of self: analysis using Rom Harré's theory of selfhood2013In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 6, 713-733 p.Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to use Harré's social constructionist theory of selfhood to describe how people with mild and moderate Alzheimer's disease (AD) express their sense of self. The findings show that Self 1, the embodied sense of being a person, was expressed fluently by participants through the use of first-person indexicals. Self 2, the experienced personal attributes and life narrative, had undergone changes. Those changes were not entirely for the worse; participants had also developed new skills in managing life with AD. In a lifetime perspective, those changes were minor and participants perceived themselves to be basically the same people that they were before having AD. When constructing Self 3, the social personae, participants usually described being supported by others, but sometimes described being exposed to malignant positioning. They also feared that they might become more exposed to negative attitudes as their AD progressed. However, participants were understanding towards the offensive behaviours of others.

  • 7.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Nolan, Mike
    University of Sheffield, UK.
    Lundh, Ulla
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Sustaining 'couplehood': Spouses' strategies for living positively with dementia2007In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 6, no 3, 383-409 p.Article in journal (Refereed)
    Abstract [en]

    This article explores the strategies that spouses use in order to live positively when one partner has dementia. Data were collected from 152 interviews with 20 couples conducted over a period of five years. Using a constructivist grounded theory methodology, data were analysed to capture the main processes involved and charted how these changed over time. Three main phases were identified termed: `sustaining couplehood'; `maintaining involvement'; and `moving on', that operated in an iterative rather than linear fashion. The data highlight the very active role played by both partners, especially in the early stages of the disease, as they strive to maintain the quality and closeness of their relationship by creating what we term a `nurturative relational context'. The diverse strategies that the couples adopt are presented, and the gradual way in which the person with dementia `hands over' or `let's go' of responsibility to their partner is described. The article provides several new insights into the nature of spousal relationships in dementia and the ways in which they seek to maximize their quality of life, and, wherever possible, sustain couplehood.

  • 8.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Nolan, Mike
    University of Sheffield, UK.
    Lundh, Ulla
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    We do things together: A case study of couplehood2005In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 1, 7-22 p.Article in journal (Refereed)
    Abstract [en]

    The value of the single case study is well established in dementiacare with the seminal contributions of Alzheimerand Kitwood being based on the study of individuals.This article presents a case study of an elderly married coupleliving with dementia and explores how theirrelationship has continued to flourish. In drawingon their story we highlight ways in which both partners seekto ‘maintain involvement’ of theperson with dementia (PWD) (Keady, 1999), andconsider the various types of ‘work’ that is required. We suggest that whilst the ‘personhood’of the PWD as an individual has received muchrecent attention, a consideration of ‘couplehood’is also essential to a full understanding of how spouses live with and respond to the impact of dementia.

  • 9.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Nolan, Mike
    University of Sheffield, UK.
    Ulla, Lundh
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
    Awareness context theory and the dynamics of dementia: Improving understanding using emergent fit2005In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 2, 269-295 p.Article in journal (Refereed)
    Abstract [en]

    This article presents the initial results of an ongoing constructivistgrounded theory study (Charmaz, 2000) exploringthe impact of dementia on the everyday life and relationships of older spousal couples. Using a processof ‘emergent fit’ (Glaser, 1978)and drawing upon data from 74 interviews with 20 spouse couples living with dementia, it considers the relevanceof ‘awareness context theory’ (Glaser& Strauss, 1965) and the ‘dynamicsof dementia’ (Keady, 1999) to an understanding of interpersonal relationships among spouses. The combinationof existing literature and new data providefurther insights into how couples actively work to ‘construct’ awareness in a way that, forthe majority, maintains both a sense of ‘self’for the person with dementia (PWD) and the integrityof the relationship between couples. It is suggested that a‘mutual acknowledgement’ of thediagnosis and a subsequent focus on maintaininga meaningful life in the present combine to create a ‘nurturative relational context’ in whichliving with dementia unfolds.

  • 10.
    Hellström, Ingrid
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Torres, Sandra
    Uppsala University, Sweden.
    The "not yet" horizon: Understandings of the future amongst couples living with dementia2016In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 15, no 6, 1562-1585 p.Article in journal (Refereed)
    Abstract [en]

    The way in which persons with dementia and their spouses regard the future could influence how they experience the disease itself. This study aims to explore how the future is understood by couples living with dementia. The analysis reveals different ways in which couples understand the future. The findings show that persons with dementia describe the here and now in ways that take the gloomy future they dread as a point of reference, and as a result of this, they operate in what we term the not yet horizon. But while they take for granted that there is a horizon that they have not yet reached, their spouses always seem to focus on the horizons that they have already crossed. The article discusses the findings in relation to ideas such as critical periods, existential coordinates and possible selves, and problematizes the implicit assumptions about the future that dementia researchers tend to operate from.

  • 11.
    Hydén, Lars-Christer
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
    Storytelling in dementia: Embodiment as a resource2013In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 12, no 3, 359-367 p.Article in journal (Refereed)
    Abstract [en]

    In narrative research about persons with dementia, much research focuses on individual storytellers and their stories often stressing the discursive or textual aspects of stories. As persons with Alzheimer’s disease generally have difficulties in telling stories according to often implicit narrative norms, they may appear to be less competent and agentive than what is actually the case. In the article, I argue for a change of focus from the textual aspects of narratives and the story as a product, to a focus on performative aspects and the embodied aspects of storytelling. A focus on the storytelling activity implies a change from the individual storyteller to the interaction with other participants in the storytelling situation. Drawing on two particular cases of storytelling, I stress the collaborative and embodied aspects of storytelling and argue that embodiment is less an individual expressive phenomenon than it is an interactive resource. 

  • 12.
    Hydén, Lars-Christer
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health and Society. Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Nilsson, Elin
    Linköping University, Department of Social and Welfare Studies, Social Work. Linköping University, Faculty of Arts and Sciences.
    Couples with dementia: Positioning the ‘we’ 2015In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 14, no 6, 716-733 p.Article in journal (Refereed)
    Abstract [en]

    The aim of this article is to investigate how spouses in couples with dementia position themselves in relation to each other by analysing their use of pronouns, especially the we. The study uses joint interviews with 11 couples. Based on a quantitative analysis of pronoun use, it is argued that the pronoun we is used by all the spouses; however, it is used less frequently by the spouses with dementia in comparison with healthy spouses. A qualitative analysis of the use of the pronoun we shows that the spouses position, experience and consider themselves as a couple and that they position and experience themselves as individuals in relation to the couple. One of the challenges for couples with dementia is to be able to retain a we in face of the progression of the dementia disease. By positioning themselves in various ways, the spouses establish and negotiate quite a complex and emotionally charged web of relationships. 

  • 13.
    Käll, Lisa
    Linköping University, Department of Culture and Communication, Arts and Humanities. Linköping University, Faculty of Arts and Sciences.
    Beyond loss: dementia, identity, personhood2015In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 14, no 4, 549-551 p.Article, book review (Other academic)
    Abstract [en]

    n/a

  • 14.
    Mok, Zaneta
    et al.
    La Trobe University, Australia.
    Müller, Nicole
    University of Louisiana at Lafayette, USA.
    Staging casual conversations for people with dementia.2014In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 13, no 6, 834-853 p.Article in journal (Refereed)
    Abstract [en]

    Social isolation is a key concern for individuals with dementia in long-term care. A possible solution is to promote social interaction between residents. A first step toward facilitating positive relationships between residents with dementia is to understand the mechanisms behind their interactions with each other, and also how their relationships with each other are built through such interactions. Drawing on casual conversations between residents in a special care unit for dementia, this paper uses systemic functional linguistics to examine how people with dementia use language to enact and construct their role-relations with each other. Results suggest people with dementia are able and willing conversationalists. However, factors such as the extent of communication breakdown and compatibility of the interlocutors may influence whether positive relations develop or not. Casual conversation is suggested to be a promising activity to encourage positive interpersonal processes between individuals with dementia in residential care.

  • 15.
    Nedlund, Ann-Charlotte
    et al.
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    O'Connor, Deborah
    Centre for Research on Personhood and Dementia, University of British Columbia, Canada.
    Editorial introduction: Special issue on Citizenship and Dementia.2016In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 15, no 3, 285-288 p.Article in journal (Other academic)
  • 16.
    Nedlund, Ann-Charlotte
    et al.
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Taghizadeh Larsson, Annika
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    To protect and to support: How citizenship and self-determination are legally constructed and managed in practice for people living with dementia in Sweden2016In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 15, no 3, 343-357 p.Article in journal (Refereed)
    Abstract [en]

    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.

  • 17.
    Örulv, Linda
    Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
    Placing the place, and placing oneself within it: (dis)orientation and (dis)continuity in dementia2010In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 9, 21-44 p.Article in journal (Refereed)
    Abstract [en]

    Disorientation as experienced by persons with progressive dementia diseases involves both existential and social dimensions. Based on video observations from a small residential care unit and exploring social interaction on a micro-level, this case study focuses on how a woman with vascular dementia actively tries to make sense of an everyday lunch situation. The analysis addresses strategies used by her to contextualize where she has ended up, and also how the meaning of the place is altered in communication. Findings point to social interaction between residents as an important resource to help maintain continuity with previous social life. However, there also seems to be an impending need for caregivers to help residents patch up their broken life-stories to render everyday situations comprehensible and the setting socially meaningful. Helping them find a way of placing themselves within it — also affording a positive self-identity and continuity with previous life history — is a major challenge in daily care.

  • 18.
    Österholm, Johannes H
    et al.
    Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life.
    Hydén, Lars-Christer
    Linköping University, Faculty of Arts and Sciences. Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life.
    Citizenship as practice: Handling communication problems in encounters between persons with dementia and social workers2016In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 15, no 6, 1457-1473 p.Article in journal (Refereed)
    Abstract [en]

    The overall aim of the study was to investigate if and how persons with dementia were able to take part in negotiations for formal support, as cases of citizenship as practice. The transcripts used for analysis were from 11 assessment meetings conducted in Sweden, in which the formal applicant was a person with dementia. The findings suggest that the actual participation of persons with dementia in assessment meetings varies. Communication problems were found in the meetings to different degrees and were dealt with differently and with various consequences. For those persons with dementia contributing at the same levels as the other participants, there was an attempt at mutual understanding. For those making fewer contributions, the other interlocutors took over the initiative and thus affected the practice of citizenship by persons with dementia in a negative way. The practice of citizenship is situation based and varies depending on all participants. When the person with dementia is able to participate in the conversation, social workers can facilitate for them to overcome communication problems by giving them more time and signaling acceptance. If the person with dementia has great problems in participating, the other participants can find different strategies to at least involve her or him in the conversation

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