Department of Clinical Sciences, Brunel University London, London, UK.
Dementia Research Centre, University College London, London, UK.
Health Soc Care Community. 2019 Jul;27(4):982-990. doi: 10.1111/hsc.12715. Epub 2019 Feb 9.
It has been highlighted that health and social care staff need a greater awareness of the needs and problems of those people with young onset dementia in the UK. Symptoms of Alzheimer's disease are relatively well known (memory loss, disorientation, language difficulties and behavioural problems). However, there is less awareness of dementia-related visual processing impairments in Alzheimer's disease, Dementia with Lewy Bodies or rarer dementia syndromes such as posterior cortical atrophy (PCA), leading to delayed assessment, diagnosis and management. This qualitative study explored health and social care practitioners' opinions of the needs of people with dementia-related visual processing impairment (such as individuals with PCA) and identify any training that these practitioners might need. Social workers, occupational therapists, care home staff, rehabilitation workers (visual impairment), optometrists and admiral nurses participated in focus groups or one-to-one semi-structured interviews. All participants were shown video clips of people with dementia-related visual impairment to facilitate discussion. Sixty-one participants took part in focus groups or interviews between November 2014 and December 2015. Participants' experiences and understanding of dementia were explored and thematic analysis of the data identified two major themes. Theme 1 explores participants' understanding of dementia-related visual impairments. Theme 2 recounts how participants address and support people with dementia-related visual impairment and their families. Participants discussed, reflected and critically analysed the video clips during data collection. Most considered new perspectives of their own clients' difficulties and those participants working with people with rarer dementias consolidated their experiences. However, some participants seemed hesitant to accept the existence of visual processing impairment arising due to dementia, rationalising novel information to existing understanding of memory loss or behavioural problems. This study highlights that health and social care practitioners want more training and better understanding of less well-recognised symptoms of dementia and rarer syndromes (including PCA) to ensure appropriate, evidence-based assessment and intervention.
人们已经强调，医疗和社会保健人员需要更加了解英国那些患有早发性痴呆症的人的需求和问题。阿尔茨海默病的症状（记忆力减退、迷失方向、语言困难和行为问题）相对较为人所知。然而，人们对阿尔茨海默病、路易体痴呆或更罕见的痴呆综合征（如后皮质萎缩症，PCA）相关的视觉处理障碍的认识较少，导致评估、诊断和管理的延误。这项定性研究探讨了医疗和社会保健从业人员对与痴呆相关的视觉处理障碍（如 PCA 患者）的需求的看法，并确定这些从业人员可能需要哪些培训。社会工作者、职业治疗师、养老院工作人员、康复工作者（视力障碍）、验光师和老年护理护士参加了焦点小组或一对一的半结构化访谈。所有参与者都观看了有关痴呆相关视觉障碍患者的视频剪辑，以促进讨论。2014 年 11 月至 2015 年 12 月期间，共有 61 名参与者参加了焦点小组或访谈。参与者探讨了他们对痴呆相关视觉障碍的经验和理解，并对数据进行主题分析，确定了两个主要主题。主题 1 探讨了参与者对痴呆相关视觉障碍的理解。主题 2 讲述了参与者如何解决和支持与痴呆相关的视觉障碍患者及其家属。参与者在数据收集过程中讨论、反思和批判性地分析了视频剪辑。大多数参与者认为自己的客户困难的新视角，并使那些与罕见痴呆症患者一起工作的参与者巩固了他们的经验。然而，一些参与者似乎犹豫不决，不愿意接受因痴呆症引起的视觉处理障碍的存在，而是将新信息合理化到记忆丧失或行为问题的现有理解中。这项研究强调，医疗和社会保健人员希望接受更多的培训，更好地了解不太为人所知的痴呆症症状和更罕见的综合征（包括 PCA），以确保进行适当的、基于证据的评估和干预。
