Support and information needs following a diagnosis of dementia with Lewy bodies
Support and information needs following a diagnosis of dementia with Lewy bodies
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DOI：
10.1017/s1041610215001362
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发表时间：
2016-03-01
影响因子：
7
通讯作者：
Taylor, John-Paul
中科院分区：
文献类型：
--
作者：
Killen, Alison;Flynn, Darren;Taylor, John-Paul
工作背景：有一个缺乏知识的信息和支持需求的人与路易体痴呆症（DLB）和他们的家庭周围的时间diagnosis.Methods：一个志愿者样本的患者与DLB和他们的家庭成员完成了一项网络调查主办的英国路易体协会在2014年5月。这集中在过去的经验，信息和支持收到什么样的信息和支持的需求将是有益的诊断时。结果：一百二十五名成年人回答了调查。大多数是DLB患者的一级亲属或配偶（n = 107，86%）。约50%（n = 61）的患者报告称，他们在诊断时没有得到任何切实的支持。十三类信息需求identified.Conclusions：人与DLB和他们的家庭成员目前在诊断支持不足。有必要满足与神经病学、药物治疗和预后有关的信息需求，包括提供情感和工具性社会支持。在制定干预措施以提高DLB患者和护理人员的知识和应对技能之前，征求信息和支持接受者的意见对于确保相关性和适当性非常重要。
Background: There is a lack of knowledge regarding the information and support needs of people with dementia with Lewy bodies (DLB) and their families around the time of diagnosis.Methods: A volunteer sample of patients with DLB and their family members completed a web survey hosted by the UK based Lewy Body Society in May 2014. This focused on past experiences of information and support received and what information and support needs would have been beneficial at the time of diagnosis.Results: One hundred and twenty five adults responded to the survey. The majority were first degree relatives or spouses of people with DLB (n = 107, 86%). Approximately 50% (n = 61) reported they had not received any tangible support at diagnosis. Thirteen categories of information needs were identified.Conclusions: People with DLB and their family members are currently inadequately supported at diagnosis. There is a need to address information needs related to symptomology, medication and prognosis, including provision of emotional and instrumental social support. Seeking the views of recipients of information and support is important in ensuring relevance and appropriateness prior to the development of interventions to improve the knowledge and coping skills of people with DLB and caregivers.