Goldsteen Minke, Abma Tineke, Oeseburg Barth, Verkerk Marian, Verhey Frans, Widdershoven Guy
RIAGG Midden Limburg, Minister Beverstraat 3, 6042 BL Roermond, The Netherlands.
Bioethics. 2007 Jan;21(1):1-12. doi: 10.1111/j.1467-8519.2007.00518.x.
This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person's well-being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family-member is put under pressure and changes during her loved one's illness that leads to difficulties and misunderstandings concerning the issue of responsibility These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are.
本文聚焦于对患有进行性痴呆症患者的护理。痴呆症对一个人的幸福以及其社会环境都有重大影响。应对痴呆症给参与者,尤其是家庭成员带来了道德问题和挑战。对痴呆症患者护理中的一个道德问题集中在责任方面;人们如何构想并确定彼此之间的责任?为了研究这个问题,我们采用了玛格丽特·沃克的理论视角。她指出,关于身份的观念在日常护理实践中责任分配的规范性期望模式中起着关键作用。这项研究的结果表明,在其亲人患病期间,家庭成员的身份是如何受到压力并发生变化的,这导致了在责任问题上的困难和误解。这些结果揭示了实际责任实践的复杂性,并凸显了对于照顾痴呆症患者的人来说,仔细关注他们如何看待自己以及如何看待其他相关人员(我是谁?我想为对方成为什么样的人?)的重要性。对这些问题的回答表明了人们对自己和彼此的期望,以及他们在特定情况下如何分配责任。专业护理人员应该考虑到家庭成员可能对自己是谁以及因此对他们的责任是什么有不同的想法。