[The loss of a common shared world. Ethical problems in palliative care for people with advanced dementia]

Person-centred (nursing home) care for people with dementia is a specific form of ('non cancer') palliative care. In order to elucidate how caregivers in nursing homes give shape to the nurse-patient relationship in people with advanced dementia and how they deal with the ethical questions that pose themselves in this realm of care ethnographial field research was conducted by two researchers in two Dutch nursing homes. It was found that in both facilities--despite differences in organization and quality of care--many forms of what Kitwood has termed 'malignant social psychology' were prevalent. A more detailed analysis of our research data revealed a relation--not only with staffshortages and a lack of professionalism--but also and primarily with the 'intrinsic complexity' of care giving in this field of palliative care. This complexity has its origin in the key problem of dementia, namely the loss of a common shared world of meaning. We discovered three features of this core problem: the dilemma(s) of truth speaking and truthfulness, the struggle to hold on to reciprocity in care giving and the paradoxes of normality nurses face in their treatment of people with dementia. In order to help caregivers cope with these problems we recommend to invest seriously in diverse forms of supportive care for nurses.