Killen Alison, Flynn Darren, De Brún Aoife, O'Brien Nicola, O'Brien John, Thomas Alan J, McKeith Ian, Taylor John-Paul
Institute of Neuroscience,Newcastle University,Campus for Ageing and Vitality,Newcastle upon Tyne,NE4 5PL,UK.
Institute of Health and Society (Decision Making and Organisation of Care group),Newcastle University,Newcastle Upon Tyne,NE4 5PL,UK.
Int Psychogeriatr. 2016 Mar;28(3):495-501. doi: 10.1017/S1041610215001362. Epub 2015 Sep 2.
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.
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.
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.
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.
对于路易体痴呆（DLB）患者及其家人在诊断前后的信息及支持需求，人们了解不足。
2014年5月，一组由路易体痴呆患者及其家庭成员组成的志愿者样本完成了一项由英国路易体协会主办的网络调查。该调查聚焦于过去接受信息及支持的经历，以及在诊断时哪些信息及支持会有所帮助。
125名成年人参与了此次调查。大多数是路易体痴呆患者的一级亲属或配偶（n = 107，86%）。约50%（n = 61）的人表示在诊断时未得到任何实际支持。确定了13类信息需求。
目前，路易体痴呆患者及其家庭成员在诊断时未得到充分支持。有必要满足与症状、药物及预后相关的信息需求，包括提供情感和实际的社会支持。在制定干预措施以提高路易体痴呆患者及其照护者的知识水平和应对技能之前，征求信息及支持接受者的意见对于确保其相关性和适当性很重要。
