Learning disability and dementia - supporting transition to a care home

大多数有学习障碍的人现在享有的更长的预期寿命值得庆祝，例如，唐氏综合症患者现在可以活到60多岁，与20世纪80年代相比，这是一大进步，当时的预期寿命还只有十几岁。然而，有学习障碍的人通常在较小的年龄也会增加患痴呆症的风险，在某些情况下，随着痴呆症的进展，学习障碍的人不再喜欢或不再实际地留在家里。在这种情况下，通常在危机时刻或痴呆症进展时，可能会转移到疗养院。两个长期存在的问题已经变得显而易见：1)学习障碍和痴呆症患者经常被转移到养老院，而没有人支持他们分享关于自己的信息或他们对未来住宿需求或偏好的愿望；2)养老院的工作人员可能会对学习障碍和痴呆症患者的入住犹豫不决。这是因为不确定如何满足他们的需求，以及人们认为所需的支持太大，或者与其他居民太不同。这项催化剂提案增加了有学习障碍和痴呆症的老年人在搬到养老院之前、期间和之后进行适当参与和活动的可能性。该项目将从以下两个方面解决问题：1.为学习障碍和痴呆症患者开发、试点和完善新的资源。与首席调查员以前的工作一致，预计这将提供灵活性，同时确保听到个人的声音。它将根据个人希望从他们的住宿和支持中获得的结果而量身定做，并将帮助护理之家的工作人员更好地了解个人的需求和偏好，以及对他们的新家的希望。我们将在最初就适当的格式和内容与学习障碍人士进行磋商，并将共同制作最终资源。这可能是纸质的、电子的、音频的或不同的东西，但将以一种被学习障碍的人认为合适和可使用的格式。挑战将是确定适当的格式并确保可用性，无论是在当前被称为家的地方还是在疗养院，承认一些学习障碍者可以访问的有限WiFi。2.为护理安老院工作人员开发和试行特许培训或信息资源/播客系列或类似节目。在现有资金范围内，这将侧重于向学习障碍和痴呆症患者过渡到疗养院。这需要首先咨询疗养院工作人员，以更多地了解他们的知识差距，并确定英国各地最多的疗养院工作人员可以访问和使用的最合适的格式。一个挑战将是开发出既可行又可持续的东西。它将需要由疗养院提供者以低成本访问，认识到行业在释放工作人员参加培训或教育方面的挑战。另一个挑战是考虑我们如何知道培训/学习在完成后是否已经成功，而不是“即时”的反馈。

The longer life expectancy now enjoyed by most people with a learning disability is to be celebrated, for example people with Down's syndrome may now live to their 60s, a big step forward from the 1980s when life expectant was still in the teens. However, people with a learning disability generally are also at increased risk of dementia at a younger age and there are occasions when it is no longer preferred or practical for a person with a learning disability to remain in their home as dementia progresses. In such situations a move to a care home may take place, often at time of crisis or as dementia advances. Two longstanding problems have become evident: 1) people with a learning disability and dementia are often moved to a care home without being supported to share information about themselves or their wishes for future accommodation needs or preferences and 2) staff in care homes for older people can be hesitant about people with a learning disability and dementia moving in. This is due to uncertainty about how to meet their needs and the perception that the support needed is too great, or too different from other residents. This Catalyst proposal increases potential for appropriate engagement and activities before, during and after a move to a care home by older people with a learning disability and dementia. There two issues will be addressed in this project in the following ways:1. To develop, pilot and refine a new resource for people with a learning disability and dementia. Consistent with previous work of the Principal Investigator, this is expected to offer flexibility whilst ensuring the voice of the person is heard. It will be tailored to outcomes that individuals want from their accommodation and their support, and will help care home staff to better understand the needs and preferences of the person, and hopes for their new home. We will consult with people with a learning disability initially on appropriate format and content and will co-produce the final resource. This may be paper-based, electronic, audio or something different, but will be in a format considered appropriate and useable by people with a learning disability. The challenge will be determining an appropriate format and ensuring usability, both in the current place called home and in a care home, recognising limited WIFI accessible to some people with a learning disability. 2. To develop and pilot licensed training or an information resource/podcast series or similar for care home staff. Within the parameters of funding available, this will focus on transition to a care home by people with a learning disability and dementia. This requires consultation with care home staff initially to understand more about their knowledge gaps and will identify the most appropriate format that can be accessed and used in practice by the highest number of care home staff across the UK. A challenge will be developing something that is both feasible and sustainable. It will need to be accessed by care home providers at low cost, recognising sector challenges in releasing staff to take part in training or education. A further challenge is to consider how we will know if the training/learning has been successful beyond 'in the moment' feedback when completed.