Mapping Moments: Establishing new directions for dementia studies through participatory action research

在英国，大约有85万人患有痴呆症。其中，25000人来自黑人、亚洲人和少数民族社区，大约42000人患有65岁以下的痴呆症。对所有年龄段的痴呆症的诊断都是限制生命的，而且绝大多数痴呆症仍然无法治愈，包括最普遍的阿尔茨海默病。以社会心理学家汤姆·基特伍德（TomKitwood）在20世纪80年代末的开创性工作为基础，痴呆症研究领域逐渐开放，以支持痴呆症患者的人格，并确定妨碍他们幸福和融入社会的障碍。最近，以加拿大皮娅·康托斯为首的社会研究人员提出，痴呆症患者能够表现出“具体化的自我”，也就是说，身体是自我认同的外在表达的核心。对于痴呆症患者来说，这种定位使研究不再仅仅关注认知功能，而是考虑如何通过一个人的动作、手势和声音来维持一种能动感。这一点很重要，尤其是对于痴呆症晚期的人来说，他们的语言交流和自传体记忆能力明显受损。正是在这个空间里，创意艺术项目开始发展新的思维方式和护理实践。虽然痴呆症患者可以参加各种各样的创意艺术项目，但参与音乐是迄今为止最常见的报道。在这里，音乐的操作定义是广泛的，包括由合格的音乐治疗师，合唱团和音乐表演提供的音乐治疗。然而，对专注于音乐和痴呆症的定量文献进行的系统和/或cochrane综述显示，结果好坏参半，对痴呆症患者几乎没有好处。一方面，这令人失望，另一方面，Reilly等人最近的大量工作表明，目前衡量创造性实践试验结果的传统方法不够灵敏，无法捕捉到对痴呆症患者最重要的是什么，比如交朋友和一起玩。有趣的是，关于音乐对痴呆症患者的个人益处的定性文献的更多基于叙述的评论产生了更多令人鼓舞的发现。为了说明这一点，一项由Dowlen等人进行的关于音乐对痴呆症患者的益处的18项定性研究的专题综述揭示了以下几点的重要性：参与；连接;确认身份;沉浸在“当下”

In the United Kingdom there are approximately 850,000 people living with dementia. Of this total, 25,000 people are from black, Asian and minority ethnic communities and around 42,000 peoplelive with dementia under the age of 65. The diagnosis of dementia at all ages is life-limiting andthere remains no cure for the vast majority of the dementias, including Alzheimer's disease whichis the most prevalent type. Grounded in the pioneering work of the social psychologist TomKitwood in the late 1980s, the dementia studies field has gradually opened-up to support thepersonhood of people with dementia and to identify barriers to their well-being and socialinclusion. Recently, social researchers, spearheaded by Pia Kontos in Canada3, have proposed thatpeople with dementia are able to demonstrate 'embodied selfhood', i.e. the notion that the bodyis central to the outwards expression of self-identity. For people with dementia, such positioningadvances study away from a sole focus on cognitive functioning and considers how a sense ofagency can be maintained through a person's actions, gestures and sounds. This is important,especially for people with the more advanced stages of dementia, where verbal communicationand autobiographical recall are significantly compromised.It is in this space where creative arts programmes have begun to develop new ways of thinkingand care practices. Whilst a broad range of creative arts programmes are available to people withdementia, participation in music is by far the most frequently reported. Here, the operationaldefinition of music is broad and encompasses music therapy delivered by a qualified musictherapist, choirs, and musical performances, for example. However, systematic and/or Cochranereviews of the quantitative literature that focus on music and dementia reveal mixed outcomes,with little, if any, benefit for the person with dementia. Whilst on the one hand this isdisappointing, on the other hand recent extensive work by Reilly et al.has shown that thecurrent, conventional ways of measuring outcomes in creative practice trials are not sensitiveenough to capture what it is that is most important to people with dementia, such as makingfriends and having fun together. Interestingly, more narrative-based reviews of the qualitativeliterature that have focussed on the personal benefits of music for people with dementia haveproduced more encouraging findings. As an illustration, a thematic review of 18 qualitative studieson the benefits of music for people with dementia by Dowlen et al.revealed the importance of:Taking Part; Being Connected; Affirming Identity; and Immersion 'in the moment'