Ingrid Hellström

‘We do things together’: A case study of ‘couplehood’ in dementia

The value of the single case study is well established in dementia care with the seminal contributions of Alzheimer and Kitwood being based on the study of individuals. This article presents a case study of an elderly married couple living with dementia and explores how their relationship has continued to flourish. In drawing on their story we highlight ways in which both partners seek to ‘maintain involvement’ of the person with dementia (PWD) (Keady, 1999), and consider the various types of ‘work’ that is required. We suggest that whilst the ‘personhood’ of the PWD as an individual has received much recent attention, a consideration of ‘couplehood’ is also essential to a full understanding of how spouses live with and respond to the impact of dementia.

Awareness context theory and the dynamics of dementia Improving understanding using emergent fit

This article presents the initial results of an ongoing constructivist grounded theory study (Charmaz, 2000) exploring the impact of dementia on the everyday life and relationships of older spousal couples. Using a process of ‘emergent fit’ (Glaser, 1978) and drawing upon data from 74 interviews with 20 spouse couples living with dementia, it considers the relevance of ‘awareness context theory’ (Glaser & Strauss, 1965) and the ‘dynamics of dementia’ (Keady, 1999) to an understanding of interpersonal relationships among spouses. The combination of existing literature and new data provide further insights into how couples actively work to ‘construct’ awareness in a way that, for the majority, maintains both a sense of ‘self’ for the person with dementia (PWD) and the integrity of the relationship between couples. It is suggested that a ‘mutual acknowledgement’ of the diagnosis and a subsequent focus on maintaining a meaningful life in the present combine to create a ‘nurturative relational context’ in which living with dementia unfolds.

A discourse of silence : professional carers reasoning about death and dying in nursing homes

ABSTRACT 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 Foucaults 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 persons 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.

Being Me and Being Us in a Family Living Close to Death at Home

We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual’s self-image, or “me-ness.” This pattern was present at the same time as the pattern of “being us,” or in other words, being a family, and dealing with impending death and a new “we-ness” as a group. “Striving for the optimal way of living close to death” was the core theme.

How people with Alzheimer's disease express their sense of self : Analysis using Rom Harré's theory of selfhood

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.

A wish to know but not always tell -- couples living with dementia talk about disclosure preferences.

Most research on disclosure issues in dementia has focused on what it is like to receive a dementia diagnosis. Little is known about the disclosure preferences that people with dementia and their cohabiting spouses have. In this study, we explore disclosure preferences and focus on what couples living with dementia want to know and tell about the disease. The study is based on 40 qualitative interviews (20 with people with dementia and 20 with their spouses). The analysis revealed five preference patterns regarding what the couples wanted to know and how they felt about sharing information concerning the disease with others. The patterns have been called: (1) want to know and tell (no reservations about it); (2) want to know and tell (some reservations about it); (3) want to know but do not want to tell; (4) want to know but cannot decide if we want to tell and (5) cannot agree on either knowing or telling. They show that couples’ preferences about what they want to know are related to what they are willing to tell. The findings also show that it is usually the preferences of the person that has a dementia diagnosis that guide the stand that couples take as far as disclosure issues are concerned. Thus, the findings show the type of interdependence that exists when one person in a couple has received the diagnosis, and the life of the two people as a couple is challenged as a result of this.

‘Are decisions about discharge of elderly hospital patients mainly about freeing blocked beds?’ A qualitative observational study

Objective To explore the interactions concerning the frail and elderly patients having to do with discharge from acute hospital wards and their participation in medical decision-making. The views of the patients and the medical staff were both investigated. Design A qualitative observational and interview study using the grounded theory. Setting and participants The setting was three hospitals in rural and urban areas of two counties in Sweden of which one was a teaching hospital. The data comprised observations, healthcare staff interviews and patient interviews. The selected patients were all about to be informed that they were going to be discharged. Results The patients were seldom invited to participate in the decision-making regarding discharge. Generally, most communications regarding discharge were between the doctor and the nurse, after which the patient was simply informed about the decision. It was observed that the discharge information was often given in an indirect way as if other, albeit absent, people were responsible for the decision. Interviews with the healthcare staff revealed their preoccupation with the need to free up beds: ‘thinking about discharge planning all the time’ was the core category. This focus not only failed to fulfil the complex needs of elderly patients, it also generated feelings of frustration and guilt in the staff, and made the patients feel unwelcome. Conclusions Frail elderly patients often did not participate in the medical decision-making regarding their discharge from hospital. The staff was highly focused on patients getting rapidly discharged, which made it difficult to fulfil the complex needs of these patients.

Feeling lonely in an unfamiliar place: older people’s experiences of life close to death in a nursing home

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 peoples 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 peoples wellbeing and identity near death.

Creating relationships with persons with moderate to severe dementia

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 caregivers 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.

Four aspects of self-image close to death at home

Living close to death means an inevitable confrontation with ones own existential limitation. In this article, we argue that everyday life close to death embodies an identity work in progress. We used a narrative approach and a holistic-content reading to analyze 12 interviews conducted with three persons close to death. By illuminating the unique stories and identifying patterns among the participants’ narratives, we found four themes exemplifying important aspects of the identity work related to everyday life close to death. Two of the themes, named “Inside and outside of me” and “Searching for togetherness,” represented the core of the self-image and were framed by the other themes, “My place in space” and “My death and my time.” Our findings elucidate the way the individual stories moved between the past, the present, and the future. This study challenges the idea that everyday life close to impending death primarily means limitations. The findings show that the search for meaning, new knowledge, and community can form a part of a conscious and ongoing identity work close to death.