In the Netherlands, there has been much debate on the question whether elderly people over 70 who are tired of life and who consider their life to be completed, should have legal options to ask for assisted dying. So far there has been little research into the experiences of these elderly people. In order to develop deliberate policy and care that targets this group of elderly people, it is necessary to understand their lifeworld. The aim of this paper is to describe the phenomenon 'life is completed and no longer worth living' from a lifeworld perspective, as it is lived and experienced by elderly people. Between April to December 2013, we conducted 25 in-depth interviews. A reflective lifeworld research design, drawing on the phenomenological tradition, was used during the data gathering and data analysis. The essential meaning of the phenomenon is understood as 'a tangle of inability and unwillingness to connect to one's actual life', characterized by a permanently lived tension: daily experiences seem incompatible with people's expectations of life and their idea of whom they are. While feeling more and more disconnected to life, a yearning desire to end life is strengthened. The experience is further explicated in its five constituents: 1) a sense of aching loneliness; 2) the pain of not mattering; 3) the inability to express oneself; 4) multidimensional tiredness; and 5) a sense of aversion towards feared dependence. This article provides evocative and empathic lifeworld descriptions contributing to a deeper understanding of these elderly people and raises questions about a close association between death wishes and depression in this sample.
Being able to describe how research findings become evidence is crucial in providing a justification for all kinds of research findings. However, qualitative researchers in health care, including those who conduct phenomenological research, are usually fairly modest when it comes qualifying their research findings as such. We advocate a view of evidence for phenomenological research, an approach that is rooted in philosophy of science, including perspectives of ontology, epistemology, and methodology. We suggest that phenomenology can become an exemplar for how qualitative research can make convincing arguments and thus can be better appreciated. In this article, we present a philosophical foundation for phenomenological evidence by exploring the notions of objectivity, validity, and generalizability in terms of openness, meaning, and essence.
IntroductionToo often dementia care is still fragmented and unresponsive to the needs of people living with dementia and their family caregivers. To develop effective health care services, in-depth insight into the experiences of family caregivers is a prerequisite.MethodsThis Dutch study is a qualitative interview study. The aim was twofold: 1) to develop an in-depth understanding of what it means to live with dementia and 2) to gain insight into what constitutes the art of living with dementia, both from the perspective of family caregivers. Data were gathered through 47 interviews with individuals and 6 focus group interviews. The analysis followed a phenomenologically inspired thematic approach.ResultsThe findings show that living with dementia can be understood as becoming entangled in uncertainty and isolation. The following themes illustrate this experience in various phases of the disease: a) Before the diagnosis: a growing uneasy feeling that something is amiss; b) The diagnostic disclosure: an uncertain and upsetting relief; c) Dementia at home: entangled in an isolated and exhausting life; d) Capitulation to relocation: torn between relief and grief. In addition, the study shows that the art of living with dementia is associated with: a) The ability to face tragedy; b) The discovery of meaning and dignity in the context of illness; c) Retaining a sense of connection and bond; d) The primacy of attention and recognition by others.Discussion and conclusionOur findings show that dealing with what Boss (2011) called ‘ambiguous loss-experiences’ is one of the most demanding aspects of living with dementia. Based on the findings, we have developed a model that depicts how people handle contingency and seek balance along the continuum of facing and resisting. Our study shows that resilience in the context of living with dementia should not be understood as merely an individual mental ability, nor as a set of behaviours, but rather as a social-ecological enterprise.
Introduction This Dutch study is a qualitative interview study. It aims to contribute to our understanding of the day-to-day experiences by providing an idiographic description of what it means existentially to be in the world as a person affected by a form of dementia, taking into account the contextual nature of these embodied experiences. Methods We used a combination of narrative accounts of people from dementia. We first collected 322 recorded messages of 16 diarists who joined the Dutch Dementia Diaries project. This data was supplemented with 37 interview accounts. Our data analysis was inspired by Van Manen’s existential phenomenological approach. Results The findings show that living with dementia–from a first-person perspective–can be understood as a severely unsettling experience: the people concerned enter a very uncertain, unpredictable and ambiguous period of life. They have to face all kinds of losses that considerably change and disrupt their relationships with 1) their own body, 2) with others and 3) with the surrounding world. This experience is explicated in the following themes: 1a) scrutinizing your disrupted body; 1b) trying to control your bodily loss-of-control; 2a) feeling scrutinized by the suspicious gaze of others; 2b) drifting away from significant others; 2c) having difficulties sharing the struggle; 2d) longing to be taken seriously; 2e) engaging in a world of peers; and 3a) sensing disorientation in an alien place; 3b) feeling closed in within a shrinking space; 3c) trying to control a dreaded future; 3d) trying to control a dreaded future by means of euthanasia. Discussion Our study demonstrates how the people with dementia are affected by ‘the eyes of others’. They longed for a safe and accepting environment, but quite often felt scrutinized by inquisitive and disapproving looks. The outcomes also reveal a connection between dominant social imaginaries and people’s self-understanding of dementia. Much of the suffering stems from living under the shadow of negative imaginaries. Furthermore, our study supports the demand for a socio-relational approach by demonstrating that–from a first-person perspective–dementia can be seen a disorder that is related in particular to questions about selfhood, social relations and social roles. For the people involved, instead of what dementia is , the focus is on what Alzheimer’s disease means and does and how it affects daily life.
ObjectivesThe aim of this paper is to provide insight into what it means to live with the intention to end life at a self-chosen moment from an insider perspective.SettingParticipants who lived independent or semidependent throughout the Netherlands.Participants25 Dutch older citizens (mean age of 82 years) participated. They were ideating on a self-chosen death because they considered their lives to be no longer worth living. Inclusion criteria were that they: (1) considered their lives to be ‘completed’; (2) suffered from the prospect of living on; (3) currently wished to die; (4) were 70 years of age or older; (5) were not terminally ill; (6) considered themselves to be mentally competent; (7) considered their death wish reasonable.DesignIn this qualitative study, in-depth interviews were carried out in the participants’ everyday home environment (median lasting 1.56 h). Verbatim transcripts were analysed based on the principles of phenomenological thematic analysis.ResultsThe liminality or ‘in-betweenness’ of intending and actually performing self-directed death (or not) is characterised as a constant feeling of being torn explicated by the following pairs of themes: (1) detachment and attachment; (2) rational and non-rational considerations; (3) taking control and lingering uncertainty; (4) resisting interference and longing for support; (5) legitimacy and illegitimacy.ConclusionsOur findings show that the in-between period emerges as a considerable, existential challenge with both rational and non-rational concerns and thoughts, rather than a calculative, coherent sum of rational considerations. Our study highlights the need to take due consideration of all ambiguities and ambivalences present after a putatively rational decision has been made in order to develop careful policy and support for this particular group of older people.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.