Exploring and supporting everyday life with a rare dementia - understanding symptoms, developing strategies and sharing stories

该奖学金将实现什么：该奖学金将揭示和交流患有后部皮质萎缩(PCA)的患者日常生活在这种令人衰弱的疾病中的经历。前列腺癌是一种罕见的痴呆，主要影响视力，通常起病年龄较小。它会导致看清东西的位置和位置的严重问题，并导致阅读、驾驶和穿衣等各种日常活动的严重困难。我的博士研究表明，患有前列腺癌的人面临着一段复杂而充满压力的诊断之旅，因为症状不常见，许多卫生专业人员对这种情况不熟悉。有了这笔奖学金，我将把这些经验传达给相关的健康专业受众，以确保他们更好地注意到并支持那些患有任何类型的痴呆症相关视力障碍的人。我的博士学位还强调，在诊断后，缺乏关于如何管理PCA症状的指导，因此，个人和家庭真的很有创造力和反应能力，开始一个持续解决问题的过程，不断适应进行性症状，以帮助PCa患者尽可能保持独立，并参与对他们重要的活动。这一奖学金将使我能够巩固并与其他正在诊断前列腺癌的个人和家庭以及支持他们的卫生和社会护理专业人员分享这一丰富的知识。这不仅将帮助患有前列腺癌的人更独立地生活并改善幸福感，还将灌输一种自信和连接感，提醒他们他们是一个同龄人社区，所有人都在经历类似的挑战。我的博士研究涉及深入访谈和全天观察患有前列腺癌和更典型的记忆导致的阿尔茨海默病(AD)的人的家中，在此期间，我收集了视频和音频记录，幸福感和功能的测量，以及包括心率和活动水平在内的生理数据。这种组合和数量的数据以前从未在不同痴呆症患者的家中收集过，与来自一系列学科(如言语和语言治疗、生理学)的研究人员合作，有许多进一步数据分析的可能性，这一奖学金将使我有机会追求这一点。为什么重要：家访使这项研究对痴呆症患者非常容易获得和包容，因为他们是在一个最舒服、最熟悉、最有能力的环境中被观察到的。另一个重要的下一步将是不仅分享我在博士研究中的发现，也分享我在做这项研究时学到的东西，鼓励其他人在家里对痴呆症患者进行研究，以确保未来的研究结果代表并与不同痴呆症患者及其家人的真实生活相关。从更大的角度来看，分享我的发现和进一步的数据分析是很重要的，因为阿尔茨海默病(AD)经常被误解为一种只影响记忆的疾病。人们对痴呆症相关的视觉损害知之甚少，往往被忽视，这可能是因为在更典型的记忆主导的阿尔茨海默病中，视觉症状通常出现在病情的后期阶段，此时人们更难清楚地解释和回忆他们的症状和任何感知挑战。这对如何在地面上提供护理具有实际意义，例如，患有晚期阿尔茨海默病的人可能被认为“忘记”了他们的茶，而他们实际上可能无法感知到它。更多地分享与痴呆症相关的视力障碍的影响以及人们如何适应和适应，对服务发展具有重大影响，从长远来看，有可能最大限度地提高受影响者的独立性、应对能力和福祉。

What this fellowship will achieve:This fellowship will reveal and communicate what people living with posterior cortical atrophy (PCA) experience living with this debilitating condition day-to-day. PCA is a rare dementia mostly affecting vision which usually has a young age of onset. It leads to significant problems with seeing what and where things are and causes profound difficulties with all sorts of daily activities including reading, driving and dressing.My PhD research has shown that people living with PCA face a convoluted and stressful diagnostic journey, as the symptoms are unusual and many health professionals are unfamiliar with the condition. With this fellowship I will communicate these experiences to the relevant health professional audiences to ensure they are better equipped to notice and support those living with any kind of dementia-related visual impairment. My PhD also highlighted that post-diagnosis, there is a lack of guidance about how to manage PCA symptoms and as a result, individuals and families are really creative and responsive, embarking on a process of ongoing problem-solving, continually adapting to the progressive symptoms in order to help the person with PCA to stay as independent as possible and engaged in the activities that matter to them. This fellowship will allow me to consolidate and share this wealth of knowledge with other individuals and families navigating a diagnosis of PCA, as well as the health and social care professionals supporting them. This will not only help people with PCA to live more independently and improve wellbeing, but will also instil a sense of confidence and connection in reminding them they are among a community of peers, all keeping going through similar challenges.My PhD research involved in-depth interviews and all-day observations in the homes of people living with PCA and more typical, memory-led Alzheimer's disease (AD), during which I collected video and audio recordings, measures of wellbeing and functioning, and physiological data including heartrate and activity levels. This combination and volume of data hasn't before been collected in the homes of people with different dementias and there are numerous possibilities for further data analysis in collaboration with researchers from a range disciplines (e.g. speech and language therapy, physiology), which this fellowship will give me the opportunity to pursue.Why it is important:Visiting people at home made this study very accessible and inclusive for people with dementia as they were observed in an environment in which they were most comfortable, familiar and able. Another important next step will be to share not only what I found in my PhD research but also what I learned while doing it, to encourage others to do research at home with people living with dementia, to make sure that future findings are representative of and relevant to the real lives of people living with different dementias and their families. Looking at the bigger picture, the sharing of my findings and further data analysis this fellowship will allow me to do is important because Alzheimer's disease (AD) is often misperceived as a disease that solely affects memory. Dementia-related visual impairment is poorly understood and often neglected, perhaps because in more typical memory-led AD, visual symptoms often occur at the later stages of the condition, at a time when people are less able to clearly explain and recall their symptoms and any perceptual challenges. This has real implications for how care is delivered on the ground, e.g. a person with later stage AD may be thought to have "forgotten" their cup of tea when they may actually be unable to perceive it. Sharing more about the impacts of dementia-related visual impairment and how people adapt and adjust, has significant implications for service development, and in the longer term, potential to maximise the independence, coping and wellbeing of those affected.