'We're happy as we are': the experience of living with possible undiagnosed dementia
'We're happy as we are': the experience of living with possible undiagnosed dementia
复制标题
DOI：
10.1017/s0144686x21001495
复制
发表时间：
2021-11-16
期刊：
影响因子：
2.5
通讯作者：
Clare, Linda
中科院分区：
文献类型：
--
作者：
Henley, Josie;Hillman, Alexandra;Clare, Linda
据估计，英国有三分之一有痴呆症迹象的人生活在没有正式诊断的情况下。在威尔士，这一比例接近一半。对痴呆症患病率和诊断数量之间存在差距的一些解释包括与长期伴侣/配偶生活在一起以及诊断的系统性障碍。这项研究招募了来自认知功能和老龄化威尔士（CFAS-Wales）队列的参与者，这些参与者随机选自居住在威尔士两个地区的65岁以上的人，他们符合痴呆症诊断的研究标准，并且在一般实践记录中没有正式诊断的记录。我们的目标是更多地了解那些没有正式诊断为痴呆症的人的生活和科普认知困难的背景和情况。我们对六名参与者及其配偶进行了定性访谈，另外还对三名受邀者的四名家庭成员进行了定性访谈。使用专题分析生成专题。我们提出的论点是，有一个适应性的反应，低服务水平和复杂的相互作用之间的期望水平的服务，认知问题的合法性的看法和权利，使服务的要求。本文的结论是，可以做更多的工作，以解决障碍的诊断和治疗服务的那些生活与痴呆症的症状，但价值放在诊断的一些人可能低于预期的政府政策。
It is estimated that a third of people in the United Kingdom with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruited participants from the Cognitive Function and Ageing Studies-Wales (CFAS-Wales) cohort, randomly selected from people aged over 65 living in two areas of Wales, who met study criteria for a diagnosis of dementia and did not have a record of a formal diagnosis in general practice records. We aimed to understand more about the contexts and circumstances of people who live with and cope with cognitive difficulties without having a formal diagnosis of dementia. We conducted qualitative interviews with six participants and their spouses, and additionally with four family members of three invited people who were unable to take part. Themes were generated using thematic analysis. We present the argument that there is an adaptive response to low service levels and a complex interaction between the expectations of levels of service, perceptions of the legitimacy of cognitive problems and the right to make demands on services. This paper concludes that more could be done to address barriers to diagnosis and treatment services for those living with symptoms of dementia, but that the value placed on diagnosis by some individuals might be lower than anticipated by government policy.