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

探索和支持罕见痴呆症的日常生活 - 了解症状、制定策略和分享故事

• 批准号: ES/W006014/1
• 负责人: Emma Harding
• 金额: $ 13.17万
• 依托单位: University College London
• 依托单位国家: 英国
• 项目类别: Fellowship
• 财政年份: 2021
• 资助国家: 英国
• 起止时间: 2021 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FW006014%2F1
• 关键词: Exploring; supporting; everyday; life; rare

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.

该奖学金将实现什么：该奖学金将揭示并传达后皮质萎缩 (PCA) 患者日常生活中的经历。 PCA 是一种罕见的痴呆症，主要影响视力，通常发病年龄较轻。它会导致人们无法看清事物的内容和位置，并对各种日常活动（包括阅读、驾驶和穿衣）造成严重困难。我的博士研究表明，患有 PCA 的人面临着一个复杂而紧张的诊断过程，因为症状不寻常，而且许多健康专业人员不熟悉这种情况。通过这项奖学金，我将把这些经验传达给相关的健康专业受众，以确保他们能够更好地注意到和支持那些患有任何类型的痴呆症相关视力障碍的人。我的博士论文还强调，诊断后，缺乏关于如何管理 PCA 症状的指导，因此，个人和家庭确实具有创造力和反应能力，开始持续解决问题的过程，不断适应渐进的症状，以帮助 PCA 患者尽可能保持独立并参与对他们重要的活动。这项奖学金将使我能够巩固并与其他诊断 PCA 的个人和家庭以及支持他们的健康和社会护理专业人员分享这些丰富的知识。这不仅可以帮助患有 PCA 的人更加独立地生活并改善福祉，而且还会给他们灌输一种自信和联系感，提醒他们自己是一个同龄人群体中的一员，所有人都在经历着类似的挑战。我的博士研究涉及对 PCA 和更典型的记忆主导型阿尔茨海默病 (AD) 患者的家中进行深入访谈和全天观察，在此期间，我收集了视频和音频记录、 健康和功能，以及包括心率和活动水平在内的生理数据。这种组合和数据量以前从未在患有不同痴呆症的人的家中收集过，并且与来自不同学科（例如言语和语言治疗、生理学）的研究人员合作进行进一步数据分析的可能性有很多，这项奖学金将使我有机会追求这些。为什么它很重要：拜访家中的人使这项研究对痴呆症患者来说非常容易和包容，因为他们是在他们最舒适、熟悉的环境中进行观察的 并且有能力。下一步另一个重要的步骤是不仅分享我在博士研究中的发现，而且分享我在研究过程中学到的东西，鼓励其他人在家中与痴呆症患者一起进行研究，以确保未来的研究结果能够代表并与不同痴呆症患者及其家人的现实生活相关。从更大的角度来看，分享我的发现和进一步的数据分析这项奖学金将使我能够做的事情很重要，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障碍知之甚少，而且经常被忽视，这可能是因为在更典型的记忆主导型 AD 中，视觉症状通常出现在病情的后期，此时人们不太能够清楚地解释和回忆自己的症状和任何知觉挑战。这对于如何在现场提供护理具有真正的影响，例如：患有 AD 后期的人可能会被认为“忘记”了他们的那杯茶，而实际上他们可能无法感知到它。更多地分享与痴呆症相关的视觉障碍的影响以及人们如何适应和调整，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。

项目成果

How do the activities of daily living decline in people living with rarer dementias? A systematic review

罕见痴呆症患者的日常生活活动如何下降？

• DOI: 10.1101/2022.09.22.22280192
• 发表时间: 2022
• 作者: Taylor B

Qualitative research in psychology: Expanding perspectives in methodology and design (2nd ed.).

心理学定性研究：扩展方法论和设计的视角（第二版）。

• DOI: 10.1037/0000252-012
• 发表时间: 2021
• 作者: Harding E

'Talking Lines': The Stories of Diagnosis and Support as Told by those with Lived Experience of Rarer Forms of Dementia

“台词”：有罕见痴呆症经历的人讲述的诊断和支持故事

• DOI: 10.21203/rs.3.rs-3333594/v1
• 发表时间: 2023
• 作者: Rossi-Harries S

Objects of hope: using object elicitation to open up conversations about hope for people affected by rarer forms of dementia

希望的对象：使用对象引发为患有罕见痴呆症的人们开启关于希望的对话

• DOI: 10.1002/alz.076209
• 发表时间: 2023
• 期刊: Alzheimer's & Dementia
• 作者: Harding E

"I felt like I had been put on the shelf and forgotten about" - lasting lessons about the impact of COVID-19 on people affected by rarer dementias.

• DOI: 10.1186/s12877-023-03992-1
• 发表时间: 2023-06-27
• 期刊: BMC GERIATRICS
• 影响因子: 4.1
• 作者: Harding, Emma;Rossi-Harries, Sam;Gerritzen, Esther Vera;Zimmerman, Nikki;Hoare, Zoe;Proctor, Danielle;Brotherhood, Emilie;Crutch, Sebastian;Suarez-Gonzalez, Aida
• 通讯作者: Suarez-Gonzalez, Aida