Seeing what they see: compensating for cortical visual dysfunction in Alzheimer's disease

看到他们所看到的：补偿阿尔茨海默病的皮质视觉功能障碍

• 批准号: ES/L001810/1
• 负责人: Sebastian Crutch
• 金额: $ 269.61万
• 依托单位: University College London
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2014
• 资助国家: 英国
• 起止时间: 2014 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FL001810%2F1
• 关键词: Seeing; what; they; see; compensating

Alzheimer's disease (AD) is often mis-perceived as a disorder largely or solely of memory. However the disease also affects the visual areas of the brain leading to problems seeing what and where things are. Dementia-related visual impairment tends to be neglected, partly because people assume any problems are due to the eyes rather than the brain, and because it occurs at a point when language and other skills are too impaired for the person with dementia to explain the perceptual problems they are having. Visual problems are also often mis-attributed to poor memory (e.g. a person with AD failing to recognize a family member in a photo may be thought to have "forgotten" the person, when in fact they may simply be unable to perceive the face clearly). Visual impairment in AD has received increased attention recently with the identification of the syndrome Posterior Cortical Atrophy (PCA) which is typically caused by AD but presents with dramatic impairment of vision not memory, as experienced and described by the author Terry Pratchett in his documentary Living with Alzheimer's.Very few studies have explored the effect of impaired vision upon people with dementia or their caregivers. A motivation for improving our understanding of how people with AD see the world is that the limited number of small studies which have been conducted suggest that even simple changes to the environment (e.g. changing the colour of tableware from white to red) can compensate for vision problems in people with AD and lead to improved functioning and health (e.g. better eating and drinking).The project objective is to demonstrate that helping AD patients to interact more successfully with their visual environment at home can have a significant positive impact upon the wellbeing and quality of life of both patients and carers. The project will involve 50 people with PCA, 150 with typical Alzheimer's disease and 100 healthy volunteers. The impact of visual aids and strategies will be measured at three time-points over the course of one year, with a staggered start to enable comparisons of quality of life in those with and without the intervention. The success of the project will be judged primarily using established measures of quality of life, caregiver burden, everyday abilities, and behavioural and psychological wellbeing. However, the design of the visual aids and compensatory strategies themselves will be based upon a combination of patient/carer interviews (qualitative evidence) and cutting-edge scientific understanding of the nature of visual impairments caused by conditions such as Alzheimer's disease (quantitative evidence). This quantitative evidence will be gathered through studies of patient's visual skills and eye movements, and their ability to move around a purpose-built laboratory environment, before the main study commences in patients' own homes.Another important aspect of the project is the involvement of people with PCA, who experience AD-related visual loss but without the loss of memory and insight seen in typical AD. These individuals with PCA offer a new and unique perspective on the AD patient's view of the world. Their experiences of care homes and day hospitals draws attention to the fact that many current social and behavioural interventions for people with dementia may be limited in their effectiveness by over-reliance upon visual information and by a systemic failure to recognize visual impairment in many service users.The research brings together experts in the fields of dementia, engineering, social science, social work, occupational therapy and ophthalmology. This interdisciplinary research team will work closely with the DeNDRoN ENRICH scheme and project advisors in the 3rd sector and industry specializing in dementia and vision loss (e.g. Thomas Pocklington Trust, Dementia and Sight Loss Interest Group, ARUP, CDRAKE) to improve the study and implement its findings.

阿尔茨海默病（AD）通常被误解为主要或完全是记忆障碍。然而，这种疾病也会影响大脑的视觉区域，导致看东西和东西在哪里的问题。与痴呆症相关的视觉障碍往往被忽视，部分原因是人们认为任何问题都是由于眼睛而不是大脑，并且因为它发生在痴呆症患者的语言和其他技能受损的时候，无法解释他们的感知问题。视觉问题也经常被错误地归因于记忆力差（例如，患有AD的人无法识别照片中的家庭成员可能被认为是“忘记”了这个人，而事实上他们可能只是无法清楚地感知面部）。AD中的视觉障碍最近随着后皮质萎缩综合征（PCA）的鉴定而受到越来越多的关注，PCA通常由AD引起，但表现为视觉而不是记忆的严重损害，正如作者Terry Pratchett在他的纪录片Living with Alzheimer's中所经历和描述的那样。提高我们对AD患者如何看待世界的理解的一个动机是，已经进行的有限数量的小型研究表明，即使是对环境的简单改变，（例如将餐具的颜色由白色改为红色）可弥补AD患者的视力问题，并改善功能和健康（例如更好的饮食）。该项目的目标是证明，帮助AD患者更成功地与家中的视觉环境互动，可以对患者和护理人员的健康和生活质量产生显著的积极影响。该项目将涉及50名PCA患者，150名典型的阿尔茨海默病患者和100名健康志愿者。视觉辅助工具和战略的影响将在一年内的三个时间点进行测量，错开开始，以便比较有和没有干预的生活质量。该项目的成功与否将主要通过对生活质量、照顾者负担、日常能力以及行为和心理健康的既定衡量标准来判断。然而，视觉辅助工具和补偿策略本身的设计将基于患者/护理人员访谈（定性证据）和对阿尔茨海默病等疾病引起的视觉障碍性质的尖端科学理解（定量证据）的结合。这项研究的另一个重要方面是让患有PCA的人参与研究，他们会经历AD相关的视力丧失，但不会出现典型AD所见的记忆力和洞察力丧失。这些患有PCA的个体为AD患者的世界观提供了一个新的独特的视角。他们在护理院和日间医院的经历提醒人们注意这样一个事实，即目前对痴呆症患者的许多社会和行为干预措施可能会由于过度依赖视觉信息和系统性未能识别许多服务用户的视力障碍而限制其有效性。这项研究汇集了痴呆症，工程，社会科学，社会工作，职业治疗和眼科学领域的专家。这个跨学科的研究团队将与DeNDRoN ENRICH计划和第三部门的项目顾问密切合作，专门研究痴呆症和视力丧失（例如托马斯Pocklington信托基金，痴呆症和视力丧失兴趣小组，ARUP，CDRAKE），以改善研究并实施其研究结果。

项目成果

Consensus classification of posterior cortical atrophy.

• DOI: 10.1016/j.jalz.2017.01.014
• 发表时间: 2017-08
• 期刊: Alzheimer's & dementia : the journal of the Alzheimer's Association
• 作者: Crutch SJ;Schott JM;Rabinovici GD;Murray M;Snowden JS;van der Flier WM;Dickerson BC;Vandenberghe R;Ahmed S;Bak TH;Boeve BF;Butler C;Cappa SF;Ceccaldi M;de Souza LC;Dubois B;Felician O;Galasko D;Graff-Radford J;Graff-Radford NR;Hof PR;Krolak-Salmon P;Lehmann M;Magnin E;Mendez MF;Nestor PJ;Onyike CU;Pelak VS;Pijnenburg Y;Primativo S;Rossor MN;Ryan NS;Scheltens P;Shakespeare TJ;Suárez González A;Tang-Wai DF;Yong KXX;Carrillo M;Fox NC;Alzheimer's Association ISTAART Atypical Alzheimer's Disease and Associated Syndromes Professional Interest Area
• 通讯作者: Alzheimer's Association ISTAART Atypical Alzheimer's Disease and Associated Syndromes Professional Interest Area

Retinal phenotyping of variants of Alzheimer's disease using ultra-widefield retinal images.

• DOI: 10.1002/dad2.12232
• 发表时间: 2021
• 期刊: Alzheimer's & dementia (Amsterdam, Netherlands)
• 作者: Csincsik L;Quinn N;Yong KXX;Crutch SJ;Peto T;Lengyel I
• 通讯作者: Lengyel I

Preparatory planning framework for Created Out of Mind: Shaping perceptions of dementia through art and science.

• DOI: 10.12688/wellcomeopenres.12773.1
• 发表时间: 2017
• 期刊: Wellcome open research
• 作者: Brotherhood E;Ball P;Camic PM;Evans C;Fox N;Murphy C;Walsh F;West J;Windle G;Billiald S;Firth N;Harding E;Harrison C;Holloway C;Howard S;McKee-Jackson R;Jones E;Junghaus J;Martin H;Nolan K;Rollins B;Shapiro L;Shapiro L;Twigg J;van Leeuwen J;Walton J;Warren J;Wray S;Yong K;Zeilig H;Crutch S
• 通讯作者: Crutch S

The need for harmonisation and innovation of neuropsychological assessment in neurodegenerative dementias in Europe: consensus document of the Joint Program for Neurodegenerative Diseases Working Group.

• DOI: 10.1186/s13195-017-0254-x
• 发表时间: 2017-04-17
• 期刊: Alzheimer's research & therapy
• 作者: Costa A;Bak T;Caffarra P;Caltagirone C;Ceccaldi M;Collette F;Crutch S;Della Sala S;Démonet JF;Dubois B;Duzel E;Nestor P;Papageorgiou SG;Salmon E;Sikkes S;Tiraboschi P;van der Flier WM;Visser PJ;Cappa SF
• 通讯作者: Cappa SF