People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.
Discussion about a dignified death has almost exclusively been applied to palliative care and people dying of cancer. As populations are getting older in the western world and living with chronic illnesses affecting their everyday lives, it is relevant to broaden the definition of palliative care to include other groups of people. The aim of the study was to explore the views on dignity at the end of life of 12 elderly people living in two nursing homes in Sweden. A hermeneutic approach was used to interpret the material, which was gathered during semi-structured interviews. A total of 39 interviews were transcribed. The analysis revealed three themes: (1) the unrecognizable body; (2) fragility and dependency; and (3) inner strength and a sense of coherence.
Contemporary philosophy of health has been quite focused on the problem of determining the nature of the concepts of health, illness and disease from a scientific point of view. Some theorists claim and argue that these concepts are value-free and descriptive in the same sense as the concepts of atom, metal and rain are value-free and descriptive. To say that a person has a certain disease or that he or she is unhealthy is thus to objectively describe this person. On the other hand it certainly does not preclude an additional evaluation of the state of affairs as undesirable or bad. The basic scientific description and the evaluation are, however, two independent matters, according to this kind of theory. Other philosophers claim that the concept of health, together with the other medical concepts, is essentially value-laden. To establish that a person is healthy does not just entail some objective inspection and measurement. It presupposes also an evaluation of the general state of the person. A statement that he or she is healthy does not merely imply certain scientific facts regarding the person's body or mind but implies also a (positive) evaluation of the person's bodily and mental state. My task in this paper will be, first, to present the two principal rival types of theories and present what I take to be the main kind of reasoning by which we could assess these theories, and second, to present a deeper characterization of the principal rival theories of health and illness.
Aims and objectives. To explore nursing home staff members' experiences of what dignity in end of life care means to older people and to themselves. Background. Dignity is a concept often used in end-of-life care, but its meaning is rarely clarified. Design. Qualitative descriptive study. Methods. Content analysis. This study is based on interviews with 21 staff members in four different nursing homes in Sweden. Findings. The results show that staff members balanced between providing for the older person's physical needs while wishing to be able to deliver a 'deeper' level of care. The older people's dignity is presented in the main theme: Feeling trust - Showing respect. The staff members' dignity is presented in the main theme: Maintaining self-respect - Being shown respect. Threats to dignity are presented in the main theme: conflicts between the ideal and the reality. Conclusions. The results reveal that nursing home staff members deal with a moral conflict between what they are able to deliver and what they would like to provide in the care of older people. Relevance to clinical practice. To promote older people's dignity, there is a need to take account of staff members' work situation. Supervision and continuous education could be one way of achieving this.
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