Faculty of Social Sciences, (Health Sciences), and Gerontology Research Center (GEREC), 7840Tampere University, Finland; Department of Sociology, University of British Columbia, Canada.
Department of Sociology and Office of the Vice-President, Health, University of British Columbia, Canada.
Dementia (London). 2021 Oct;20(7):2307-2322. doi: 10.1177/1471301221994300. Epub 2021 Feb 17.
People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers.
Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders.
Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers' decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited.
People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.
记忆障碍患者通常需要家庭护理人员和医疗保健及社会护理提供者的照顾和帮助。由于认知能力和语言技能的退化，他们可能无法将自己的想法和护理偏好传达给他人。因此，他们的代理权可能会受到限制。我们研究了记忆障碍患者和其配偶护理者对与正式护理提供者相遇时的护理影响的描述。
采用定性主题分析方法，识别、分析和报告描述与不同社会或医疗保健环境中的专业人员相遇时的主题。从 19 名配偶护理者和 15 名记忆障碍患者中收集深入访谈数据。
有四个主题中的三个描述了记忆障碍患者及其配偶护理者如何影响正式护理：默许、协商护理决策和控制。第四个主题描述了缺乏影响力。记忆障碍患者及其配偶护理者有影响护理的方法，但配偶护理者确定了更多的方法。双方要么接受并遵循正式护理者的护理指南，要么控制局面并做出自己的决定。配偶护理者还试图通过与正式护理者协商来影响护理决策。当正式护理者的决策被认为不一致或其行动的理由难以理解时，影响护理的可能性就会受到限制。
记忆障碍患者及其家属往往处于不利地位，因为他们在患病期间缺乏对医疗保健决策的权力，而这些决策往往受到结构性因素的影响。为了支持记忆障碍患者的代理权并促进共同决策，需要阐明服务结构，并在护理涉及的不同方之间进行更清晰的沟通。
