In-Touch: Implementation of a person-centered palliative care iNtervention To imprOve comfort, QUality of Life and social engagement of people with advanced dementia in Care Homes

挑战。欧洲各地越来越多的晚期痴呆症患者和需要姑息治疗的人住在疗养院，照顾他们是困难和苛刻的。患有严重痴呆症的人可能行动不便，无法说话，无法参与日常活动。他们可能感到不安或焦躁不安，生活质量较低，不适程度较高。家庭成员可能会发现很难与亲人建立有意义的联系，并对未来感到焦虑。护理人员除了提供喂养、厕所和皮肤护理等基本需求外，可能很难提供护理。解决办法。这是一种道德上合理的解决方案，它超越了科学的范畴，既提供当下的护理(使用Namaste Care)，又为未来的护理需求进行规划(使用家庭照顾者决策支持“舒适护理”方法)。我们称之为触摸式干预。计划一下。对7个国家的56家疗养院进行In Touch干预的跨国整群随机对照试验，以确定其对舒适度、社交参与度和生活质量的影响。这得到了9个工作包的支持，这些工作包确保：干预措施得到了强有力的规划，并针对不同的国家背景；了解了干预措施的实施方式，以及人们对干预措施的体验和道德价值；了解了成本效益；如果干预措施成功，我们有有效的计划转让有关干预措施的知识。冲击力。这种干预可能预示着整个欧洲为处于缓解阶段的晚期痴呆症患者提供护理的方式发生了重大变化。晚期痴呆症患者在接近死亡时应该有更好的生活质量，更好的参与度和更少的社会孤立。护理人员将有一个合乎道德的和基于证据的干预措施，实施起来成本效益高，家庭成员将更多地参与和了解舒适护理和未来的护理计划。

Challenge. Caring for the increasing numbers of people across Europe with advanced dementia and palliative care needs who live in care homes is difficult and demanding. People with advanced dementia can be immobile, non-verbal and unable to take part in day-to day activities. They can be unsettled or agitated, with low quality-of-life and elevated levels of discomfort. Family members can find it difficult to connect meaningfully with their relative and are anxious about the future. Care staff can struggle to provide care other than for basic needs such as feeding, toileting and skin care. Solution. An ethically sound solution which advances beyond the science, providing both care ‘in-the moment’ (using Namaste Care) and planning for future care needs (using the Family Carer Decision Support ‘Comfort Care’ approach). We call this the In-Touch intervention. Plan. To deliver a cross-country cluster randomised controlled trial of the In Touch intervention in 56 nursing care homes across 7 countries to determine its effect on comfort, social engagement and quality of life. This is supported by 9 work packages ensuring that: the intervention is robustly planned and contextualised for different country settings; there is understanding of how it is delivered, and what people experience and ethically value about the intervention; the cost-effectiveness is understood; we have effective plans to transfer knowledge about this intervention if it is successful. Impact. This intervention could herald a major change in the way that care for people with advanced dementia, in the palliative phase of their illness, is provided across Europe. People with advanced dementia should have better quality of life as they approach death, improved engagement and reduced social isolation. Care staff will have an ethically sound and evidence-based intervention that is cost-effective to implement, with family members more involved in, and knowledgeable about, comfort care and future care plans.