Medical School, College of Health and Medicine, Australian National University, Building 4, Canberra Hospital, Garran, ACT, 2602, Australia.
Department of Palliative Care, Canberra Regional Cancer Centre, Canberra Hospital, Garran, ACT, 2602, Australia.
J Bioeth Inq. 2019 Jun;16(2):209-216. doi: 10.1007/s11673-019-09910-8. Epub 2019 Apr 5.
Dementia is more than a disease. What dementia is, how it is understood, and how it is experienced is influenced by multiple factors including our societal preoccupation with individual identity. This essay introduces empirical and theoretical evidence of alternative ways of understanding dementia that act as a challenge to common assumptions. It proposes that dementia be understood as an experience of systems, particularly networks of people affected by the diagnosis. Taking this step reveals much about the dementia experience, and about what can be learned from persons with dementia and their networks of family, friends, and carers. It also suggests that dementia may be best thought of as an ecology that arises from the interaction between neuropathological change, people, language, and meaning. While challenging, this perspective may provide new ways of responding to dementia and caring for those affected by it.
痴呆不仅仅是一种疾病。痴呆的定义、理解方式和体验方式受到多种因素的影响，包括我们社会对个体身份的过分关注。本文介绍了一些经验和理论证据，这些证据提出了理解痴呆的替代方法，对常见的假设构成了挑战。本文提出，应该将痴呆理解为一种系统体验，特别是与诊断相关的人群网络。采取这一步骤可以揭示出很多关于痴呆体验的信息，以及可以从痴呆患者及其家庭、朋友和护理人员网络中学到的东西。这也表明，痴呆可能最好被视为一种生态，它源于神经病理学变化、人与语言和意义之间的相互作用。虽然具有挑战性，但这种观点可能为应对痴呆症和照顾受其影响的人提供新的方法。
