IES Platform - development of an awareness-based intervention to enhance quality of life in severe dementia

重度痴呆症患者的住宿护理质量较差，亟待改善。虽然提高护理质量对所有居民都很重要，但患有更严重痴呆症的人可能会被边缘化，得不到心理和社会需求的满足，其中许多人不再进行语言交流。照顾者可能会认为患有严重痴呆症的人不知道他们周围的环境和发生在他们身上的事情。因此，照顾者可能会专注于完成任务，而不是太关注居民的反应和反应。然而，最近的研究表明，患有非常严重痴呆症的人仍然可能保持一定程度的意识。如果能够培训护理人员观察意识的迹象，这将有助于他们提高对住院医生需求的敏感度，并加强他们的护理实践。对护理人员进行培训，包括提供信息和持续支持落实新技能，可以非常有效地改善居民的福祉。在这项研究中，我们旨在开发一种测量方法，帮助工作人员观察细微的意识迹象，为工作人员提供使用这一测量方法的培训和支持，并评估对居民生活质量和工作人员态度和做法的影响。在制定这项措施时，我们将以为严重脑损伤患者开发的类似措施为起点，并将为照顾者举办焦点小组，以确定最初应如何调整这项措施。然后我们会用这一措施来观察居民吗？行为和反应，并相应地加以提炼。最后，我们将进行一项干预研究，将接受工作人员使用新措施的培训和支持的家庭与仅接受日常护理的家庭进行比较。我们预计，在工作人员接受培训的院舍中，居民的生活质量以及工作人员的态度和做法将有所改善，但在接受日常护理的院舍中，情况并非如此。我们从这项初步研究中获得的信息将使我们能够对干预措施进行明确的试验，为从业者和政策制定者提供可靠的证据。与此同时，这些发现将影响护理人员的培训提供，严重痴呆症患者的新意识测量将对从业者和研究人员都有用。

Quality of residential care for people with severe dementia is poor and in urgent need of improvement. While improving quality of care is important for all residents, there is a risk that people with more severe dementia, many of whom no longer communicate verbally, will be marginalised and fail to have their psychological and social needs met. Carers may assume that people with severe dementia are unaware of their surroundings and of what is happening to them. As a result, carers may focus on getting tasks done without paying much attention to the reactions and responses of the resident. Recent research indicates, however, that people with very severe dementia may still retain a degree of awareness. If care staff can be trained to observe the signs of awareness, this should help them to increase their sensitivity to the needs of the resident and to enhance their care practice. Training for care staff that includes both information provision and ongoing support for implementing new skills can be very effective in improving resident well-being. In this study we aim to develop a measure that staff can use to help them observe subtle signs of awareness, to provide staff with training and support in using this measure, and to evaluate the effects on resident quality of life and on staff attitudes and practices. In developing the measure we will use as a starting-point a similar measure developed for people with severe brain injury, and we will hold focus groups for carers to establish how the measure should be initially adapted. We will then use the measure to observe residents? behaviour and responses, and refine it accordingly. Finally we will carry out an intervention study comparing homes where staff receive training and support in using the new measure with homes where residents simply receive their usual care. We expect to see improvements in resident quality of life and staff attitudes and practice in the homes where staff received training, but not in the homes where residents received usual care. The information we gain from this initial study will allow us to develop a definitive trial of the intervention that will provide sound evidence for practitioners and policy-makers. In the meantime, the findings will influence training provision for care staff, and the new measure of awareness in people with severe dementia will be useful for both practitioners and researchers.