The impact of multicomponent support groups for those living with rare dementias

我们将对与患有罕见痴呆症的人生活在一起或照顾他们的人的支持团体的价值进行首次重大研究。我们将看到与其他有类似情况的人见面的好处，并分享实际和情感上的支持。我们会在超过1000名罕见失智症支援网络（www.raredementiasupport.org）成员的协助下：(a)与英国和加拿大各地的支援小组成员进行电话访谈(b)了解不同类型的支援小组如何在不同时间帮助患有不同失智症的不同人(c)开发新的方法来了解支援小组是否有效(d)跟进我们的支援小组网络的新成员2-4年，看看什么有用，什么没用，什么类型的信息和支持是有帮助的，什么时候需要帮助(e)测试一个新的基于在线视频的支持论坛，(f)确定与其他类型的服务相比，不同类型的支持小组的成本效益如何(g)培训医护专业人员和研究人员，使他们认识到患有罕见痴呆症的人的需要；这很重要，因为大约四分之一的痴呆症患者患有一种不太常见的形式（不是典型的阿尔茨海默病或血管性痴呆症）。这些罕见的痴呆症在年轻人（65岁以下）中更为常见，他们通常仍然需要管理工作，照顾孩子和抵押贷款。得到诊断往往是困难和缓慢的，一旦得到诊断，提供的服务往往不能满足人们的需求。特别是，一般的支持团体和痴呆症咖啡馆往往感觉无关紧要，因为其他参加的人往往年龄大得多，处境不同，症状也不同。包括专业人士和痴呆症患者在内的支持团体可能是实现首相2020年痴呆症挑战目标的重要组成部分，该目标是“每个被诊断患有痴呆症的人在诊断后都得到有意义的护理，这将支持他们和他们周围的人”。

We will carry out the first major study of the value of support groups for people living with or caring for someone with a rare form of dementia. We will be looking at the benefits of meeting other people living with a similar condition, and sharing practical and emotional support.We will do this with the help of over 1000 members of the Rare Dementia Support network (www.raredementiasupport.org) by:(a) Conducting telephone-based interviews with support group members across the UK and Canada(b) Understanding how different types of support group help different people with different dementias at different times in their journey with dementia(c) Developing new ways for capturing whether support groups are effective(d) Following new members of our support group network over 2-4 years to see what works, what doesn't, what types of information and support are helpful, and when is that help needed(e) Testing out a new online video-based support forum designed with, by and for people caring for someone with a rare dementia called frontotemporal dementia (FTD)(f) Determining how cost-effective different types of support group are compared with other kinds of service(g) Training up healthcare professionals and researchers to recognise the needs of people with rare dementias, and to learn what benefits this training may have for their work with people with more common dementiasThis is important because around a quarter of people with dementia have one of the less common forms (not typical Alzheimer's disease or vascular dementia). These rare dementias are more common in young people (under 65 years old), who are often still having to manage work, childcare and a mortgage. Getting a diagnosis is often difficult and slow, and the services available once you do often do not meet people's needs. In particular, general support groups and dementia cafes often do not feel relevant as other people attending are often much older, are in a different situation and have different symptoms. Support groups involving both professionals and people living with dementia may be an important part of delivering on the PM's Dementia Challenge 2020 objective of 'Every person diagnosed with dementia having meaningful care following their diagnosis, which supports them and those around them'.