Public Discourses of Dementia: Challenging stigma and promoting personhood

痴呆症是指一组涉及一系列认知障碍症状的疾病过程，包括记忆力丧失以及推理、感知和沟通技能方面的问题。目前，世界上约有5000万痴呆症患者，预计到2050年，这一数字将增加两倍。最常见的痴呆症是阿尔茨海默病。由于目前还没有治愈的方法，痴呆症是一种慢性疾病--被诊断为痴呆症的人将与之共度余生。仅在英国，目前估计有大约85万人患有痴呆症，由于该国人口老龄化，预计未来这一数字还会增加。痴呆症是英国面临的主要公共卫生挑战，据估计，英国的医疗费用约为135亿英镑，据了解，该国的“无偿”医疗费用甚至更高。随着英国痴呆症发病率的增加，预计这些费用也将增加。接受痴呆症诊断的人不仅患有痴呆症，而且许多人还必须生活在围绕它的耻辱中。痴呆症耻辱可以通过多种方式对痴呆症患者及其家人的生活产生负面影响，例如产生羞耻感，减少他们寻求医疗支持和参与研究的可能性。在英国，痴呆症的耻辱也被发现扭曲了医疗保健各个层面的服务标准，从资助决定到服务委托和一线护理。换句话说，痴呆症污名不仅对痴呆症患者的生活质量有害，而且潜在地也对他们的生活机会有害。痴呆症的污名也可能对英国公众产生更广泛的影响，因为它被发现会造成人们对痴呆症综合征的恐惧和误解，以及对患有痴呆症的人的负面态度。因此，痴呆症污名造成的伤害是广泛而深刻的，不仅对受痴呆症影响最严重的人的健康和生活质量有影响，而且对整个社会也有影响。我们谈论痴呆症的方式，包括我们对语言和图像的使用，有能力塑造我们对它的态度，以及对于被诊断为痴呆症的人，它是如何经历的。不幸的是，在公共领域，如在媒体上，关于痴呆症的许多传播都是负面的和耸人听闻的，突出了它的威胁，并将痴呆症诊断作为有效的死刑判决。与此同时，痴呆症患者被认为是危险的，是他们过去的自我的次要版本。这种描述已经被发现对痴呆症患者及其家人产生有害影响，在公众中制造恐惧和误解，更有可能增加痴呆症的耻辱，而不是挑战它。因此，这项研究将通过改变英国公共领域讨论痴呆症的方式来挑战痴呆症的污名，特别是关注主流媒体、公共卫生机构、慈善机构、社交媒体和在线痴呆症支持团体。了解在这些环境中与痴呆症沟通相关的语言和图像是如何相互关联的，也是如何在彼此之间变化的，可以帮助我们评估在一种情况下表现痴呆症对另一种情况的潜在影响。根据其研究结果，该项目的研究人员将与痴呆症患者、慈善机构、倡导团体和主流媒体密切合作，通过制定沟通准则和向这些利益攸关方提供培训，以挑战耻辱和促进人格的方式，改变围绕痴呆症的沟通做法。至关重要的是，研究团队正在与痴呆症患者密切合作，以确保他们的声音不仅在未来的公共话语中被听到并受到重视，而且在研究过程本身也是如此。

The word dementia refers to groups of disease processes that involve a range of cognitive impairment symptoms, including memory loss and problems with reasoning, perception and communication skills. There are around 50 million people living with dementia in the world today and this is expected to triple by 2050. The most common type of dementia is Alzheimer's Disease. Because there is presently no cure for it, dementia is a chronic condition - people who are diagnosed with dementia live with it for the rest of their lives. In the UK alone there are currently estimated to be around 850,000 people living with dementia, a figure that is anticipated to increase in the future due to the country's ageing population. Dementia is major public health challenge in the UK, where the costs of care are estimated to be around £13.5 billion, with the costs of 'unpaid' care in the country understood to be even higher. As the incidence of dementia increases in the UK, it is anticipated that these costs will increase too. People receiving a dementia diagnosis not only live with dementia, but many must also live with the stigma that surrounds it. Dementia stigma can negatively impact the lives of people living with dementia and their families in a wide range of ways, such as creating feelings of shame and making them less likely to seek medical support and take part in research. In the UK, dementia stigma has also been found to distort service standards at all levels of healthcare, from funding decisions to service commissioning and frontline care. In other words, dementia stigma is harmful not only for the quality of life of people with dementia but also, potentially, for their life chances too. Dementia stigma is also likely to have implications for the British public more generally, as it has been found to create fear and misunderstanding of the syndrome, as well as negative attitudes towards people living with it. The harm done by dementia stigma is thus widespread and deep, having implications not only for the health and quality of life of those most affected by the syndrome, but for society as a whole.The way we talk and communicate about dementia, including our use of language and imagery, has the power to shape our attitudes towards it and, for people diagnosed with dementia, how it is experienced. Unfortunately, much communication about dementia in the public domain, such as in the media, is negative and sensationalistic, foregrounding its threat and presenting dementia diagnosis as an effective death sentence. People living with dementia, meanwhile, are presented as hazardous and lesser versions of their past selves. Such portrayals have been found to have harmful effects on people living with dementia and their families, to create fear and misunderstanding in the public, and are more likely to add to dementia stigma than to challenge it. This research will thus challenge dementia stigma by changing the ways in which dementia is discussed in the public domain in the UK, focusing in particular on the mainstream media, public health bodies, charities, social media and online dementia support groups. Understanding how the language and imagery associated with communication about dementia in these contexts relate to, but also vary between, one another can help us to assess the potential effects of dementia representation in one situation on another. In light of its findings, the researchers on this project will work closely with people with dementia, charities, advocacy groups and the mainstream media to implement changes to communicative practices around dementia in ways that challenge stigma and promote personhood, through the development of communication guidelines and the delivery of training to these stakeholders. Crucially, the research team is collaborating closely with people with dementia to ensure that their voices are heard and valued not only in future public discourse but also in the research process itself.