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The sense of self is vulnerable in people with Alzheimer's disease (AD), and might be positively and negatively influenced by research participation. The purpose of this study was to describe how people with AD express their experience of being a research participant with respect to their sense of self. Interviews and support group conversations involving 13 people with mild and moderate AD were analyzed using qualitative content analysis. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks. Participants described contributing to research as being in line with their lifelong values and lifestyles. They expressed contentment and pride about being research participants, emphasized their positive relationships with the researchers, and described participation as a meaningful activity. When research procedures threatened their sense of self, they were able to reason about risks and decline participation. [ABSTRACT FROM AUTHOR]

Aim The aim of the study was to deepen the understanding of how older persons living in a nursing home experience life close to death. Background A move to and a life in a nursing home while being close to death is a reality for many older people in Sweden. Being able to express thoughts and feelings about death has been described as both crucial for sustaining personhood as well as for establishing a meaningful existence at the end of life. Important are the experiences of older people living in nursing homes who are approaching death. Method Six older people were interviewed on one to four occasions. A total of 16 interviews were conducted with the participants. An interpretative approach was chosen. Findings The main interpretation, Feeling lonely in an unfamiliar place, is based on three themes (i) Waiting for death , with the subthemes death as a release and thinking of oneself as dead; (ii) Subordinate oneself to values and norms of the staff , with the subthemes feeling offended and feeling trapped; and (iii) Keep the courage up. The older people's lives were characterised by feelings of aloneness in an unfamiliar place which contributed to a sense of existential loneliness. They experienced few opportunities to discuss their thoughts of life and death, including preparations for passing away. Conclusion and implication for practice It is of importance for professionals to be able to meet older people as they are and respect them as human beings in their transitions, before, during and after the move to a nursing home. It is important to find ways to support older people's wellbeing and identity near death. [ABSTRACT FROM AUTHOR]

The self is constructed in cooperation with other people and social context influences how people perceive and express it. People with Alzheimer’s disease (AD) often receive insufficient support in constructing their preferred selves, but little is known about how they express themselves together with other people with AD. In accordance with Harré’s social constructionist theory of self, this study aimed to describe how five people with mild and moderate AD express their Self 2 (i.e., their personal attributes and life histories) in a support group with a facilitator experienced in communicating with people with AD. The participants’ expressions of their Self 2 were analyzed with qualitative abductive content analysis and interpreted in terms of agency and communion and a lack of agency and communion. The findings highlight the importance of supporting a sense of agency and communion when assisting people with AD in constructing their self. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

Nursing homes are a setting in which death and dying is common. How death and dying is articulated and the actions that take place in a nursing home constitute a discourse that guides the staff in their work. The aim of this study was to explore the discourse of death and dying in nursing homes from the perspective and understanding of the staff. The study draws on Foucault's discourse analysis. Data are from five focus-group discussions held with 28 staff of four different nursing homes in Sweden. The findings show that the discourse had three characteristics: (a) dying was silent and silenced, (b) emotions were pushed into the background, and (c) attentiveness to death arose after the moment of the elderly person's death. The structure of the discourse was characterised by a movement between two positions, avoiding and confronting death, the main focus being on avoidance. The articulation and practices of silence highlight a need to regard dying as a process that requires attention. One way to ensure appropriate attention could be to instil the philosophy of palliative care in nursing homes, including training and support for the staff in their work. The study demonstrates that nursing-home staff need more knowledge and support to enable them to feel that they do a good job. [ABSTRACT FROM AUTHOR]

Seven care managers employed by a large municipality in Sweden were interviewed concerning their reasoning regarding end-of-life care for older people. Data were analyzed using a hermeneutic approach. The results showed that end-of-life care was considered to constitute a small part of the care managers' work and was something they did not focus on in general when assessing care needs. Two different pathways to death - the natural and the medical - were identified. In the natural pathway, death was invisible and the care was more routine-oriented. In the medical pathway, death was visualised and the care more individualised. Neither of the pathways paid attention to communication or existential needs. Thus, there is a need for a palliative pathway to death based on the philosophy of palliative care, which could provide guidance for care managers and promote opportunities for older people to achieve a dignified dying and death. [ABSTRACT FROM AUTHOR]

The aim of this study was to illuminate the meaning of caring relationship directed to the elderly as experienced by district nurses. Twelve district nurses were interviewed in the form of a dialogue. The interviews were audiotaped and transcribed. The text was analyzed using a phenomenological-hermeneutic approach inspired by Paul Ricoeur who describes the interpretation of a text as a dialectical movement between understanding and explanation. The interpretation of the text reveals that the meaning of caring relationship is friendship and caring communion that is founded in the local community. [ABSTRACT FROM AUTHOR]

hansebo g. & kihlgren m. (2004) Journal of Advanced Nursing 45(3), 269–279 Nursing home care: changes after supervision An intervention project was conducted in three nursing home wards in Sweden. Most patients had severe dementia. The intervention consisted of supervision for individualized and documented nursing care, based on multidimensional assessment. To illuminate changes in carers’ approach after the intervention. Several data collections were conducted across the intervention and consisted of nursing documentation, patient life stories as told by carers, video recorded interactions, stimulated recall interviews and a questionnaire. Both quantitative and qualitative methods were used in the analyses. The findings from the different methods mirrored each other and added to the credibility of the intervention. Communicated knowledge about patients improved in nursing documentation and also as told by carers. Carers were differently skilled in managing the complexity of nursing care situations before as well as after the intervention, but the intervention contributed to developing carers in ‘confirming nursing care’. They also improved in their ability to verbalize reflections about their everyday life with patients with dementia. Supervision made it possible for carers to share their lived experiences about their day-to-day life with patients, which could promote personal and professional development and thus improve care quality. It also appeared that a detailed assessment tool used as part of the nursing process contributed to seeing a patient as a real person behind a dementia surface. [ABSTRACT FROM AUTHOR]