Rural Clinical School of Western Australia, University of Western Australia Albany Centre, 31 Stirling Terrace, Albany, Western Australia, 6330, Australia.
Brightwater Group, 3/355 Scarborough Beach Road, Osborne Park, Western Australia, 6017, Australia.
J Bioeth Inq. 2019 Dec;16(4):587-608. doi: 10.1007/s11673-019-09945-x. Epub 2019 Dec 12.
Supported decision-making has been promoted at a policy level and within international human rights treaties as a way of ensuring that people with disabilities enjoy the right to legal capacity on an equal basis with others. However, little is known about the practical issues associated with implementing supported decision-making, particularly in the context of dementia. This study aimed to understand the experiences of people with dementia and their family members with respect to decision-making and their views on supported decision-making. Thirty-six interviews (twenty-one dyadic and fifteen individual) were undertaken with fifty-seven participants (twenty-five people living with dementia and thirty-two family members) across three states in Australia. Interpretative Phenomenological Analysis (IPA) was used as the methodological approach, with relational autonomy as a theoretical perspective. We identified two overarching themes relating to participants' experiences with decision-making: "the person in relationship over time" and "maintaining involvement." Participant views on the practical issues associated with supported decision-making are addressed under the themes of "facilitating decision-making," "supported decision-making arrangements," "constraints on decision-making," and "safeguarding decision-making." While participants endorsed the principles of supported decision-making as part of their overarching strategy of "maintaining involvement" in decision-making, they recognized that progressive cognitive impairment meant that there was an inevitable transition toward greater involvement of, and reliance upon, others in decision-making. Social and contextual "constraints on decision-making" also impacted on the ability of people with dementia to maintain involvement. These themes inform our proposal for a "spectrum approach" to decision-making involvement among people living with dementia, along with recommendations for policy and practice to assist in the implementation of supported decision-making within this population.
支持性决策在政策层面和国际人权条约中得到了提倡，作为确保残疾人在与其他人平等的基础上享有法律能力的一种方式。然而，对于实施支持性决策所涉及的实际问题，特别是在痴呆症的背景下，人们知之甚少。本研究旨在了解痴呆症患者及其家庭成员在决策方面的经验以及他们对支持性决策的看法。在澳大利亚的三个州，对 57 名参与者（25 名患有痴呆症的人和 32 名家庭成员）进行了 36 次访谈（21 次是两人一组，15 次是个人访谈）。采用解释现象学分析（IPA）作为方法学方法，以关系自主为理论视角。我们确定了与参与者决策经验相关的两个总体主题：“随着时间的推移的关系中的人”和“保持参与”。参与者对支持性决策相关实际问题的看法在以下主题下进行了讨论：“促进决策”、“支持性决策安排”、“决策的限制”和“保障决策”。虽然参与者支持支持性决策的原则作为他们“保持参与”决策的总体策略的一部分，但他们认识到，认知能力的逐渐下降意味着在决策中必然会有更多的参与和依赖他人。社会和背景“决策的限制”也影响了痴呆症患者保持参与的能力。这些主题为我们提出了一种“光谱方法”来了解痴呆症患者的决策参与，以及为该人群实施支持性决策提供政策和实践建议。
