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Caring for Individuals with Early-Onset Dementia and Their Family Caregivers: The Perspective of Health Care Professionals

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Advances in Alzheimer's Disease 2014年第1期3卷 33-43页

作者： Francine Ducharme Marie-Jeanne Kergoat Pascal Antoine florence pasquier Renée Coulombe Centre de Recherche Institut Universitaire de Gériatrie de Montréal Montréal Canada Centre National de Référence pour les Patients Jeunes Atteints de la Maladie d’Alzheimer et Maladies Apparentées Lille France Faculty of Nursing Université de Montréal Montréal Canada Unité de Recherche en Sciences Cognitives et Affectives (URECA) Maison Européenne des Sciences de l’Homme et de la Société (MESHS) Université Lille 3 Charles de Gaulle Lille France

The phenomenon of early-onset dementia remains an under-researched subject from the perspective of health care professionals. The aim of this qualitative study was to document the experiences and service needs of patients and their family caregivers for optimal clinical management of early-onset dementia from the perspective of health care professionals. A sample of 13 health care professionals from various disciplines, who worked with individuals who suffered from Alzheimer’s disease or related disorders and their family caregivers, took part in focus groups or semi-structured individual interviews, based on a life course perspective. Three recurrent themes emerged from the data collected from health care professionals and are related to: 1) identification with the difficult experiences of caregivers and powerlessness in view of the lack of services;2) gaps in the care and services offered, including the lack of clinical tools to ensure that patients under age 65 were diagnosed and received follow-up care, and 3) solutions for care and services that were tailored to the needs of the caregiver-patient dyads and health care professionals, the most important being that the residual abilities of younger patients be taken into account, that flexible forms of respite be offered to family caregivers and that training be provided to health care professionals. The results of this study provided some innovative guidelines for optimal clinical management of early-onset dementia in terms of the caregiver-patient dyad.

关键词： Early-Onset Dementia Family Caregivers Perspective of Health Care Professionals Service Needs

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血管性认知损害诊断的进一步规范化：血管性认知损害分类共识研究组指南

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国际脑血管病杂志 2018年第4期26卷 241-250页

作者： Olivia A. Skrobot Sandra E. Black Christopher Chen Charles DeCarli Timo Erkinjuntti Gary A. Ford Rajesh N. Kalaria John O'Brien Leonardo Pantoni florence pasquier Gustavo C. Roman Anders Wallin Perminder Sachdev Ingmar Skoog the VICCCS group Yoav Ben-Shlomo Anthony P. Passmore Seth Love Patrick G. Kehoe 朱婷珂徐俊 Translational Health Sciences University of Bristol Bristol UK Sunnybrook Research Institute University of Toronto Ontario Canada Department of Pharmacology National University of Singapore Singapore Department of Neurology and Center for Neuroscience University of California at Davis Sacramento California USA Neurology University of Helsinki and Helsinki University Hospital Helsinki Finland Divison of Medical Sciences Oxford University Oxford UK Institute of Neuroscience Newcastle University Newcastle UK Department of Psychiatry University of Cambridge School of Clinical Medicine Cambridge UK NEUROFARBA Department University of FlorenceFlorence Italy Inserm U1171 University of Lille Lille France Methodist Neurological Institute Houston Texas USA Memory Clinic at Department of Neuropsychiatry Sahlgrenska University Hospital Molndal Sweden Institute of Neuroscience and Physiology Sahlgrenska AcademyUniversity of Gothenburg Sweden School of Psychiatry University of New South WalesSydney Australia Neuropsychiatric Institute Prince of Wales Hospital Randwick New South WalesAustralia Population Health Sciences University of Bristol Bristol UK Institute of Institute of Clinical Sciences Block B Queens University Belfast Belfast UK 116044 大连医科大学 116044 苏北人民医院神经内科扬州225001 首都医科大学附属北京天坛医院神经内科北京100069

引言血管性认知损害（vascular cognitive impairment,VCI）诊断共识的缺乏（体现为多种不同评估方案的使用）,妨碍了对其理解和治疗的推进.多个国家的大量临床医生和研究人员参与了2个阶段血管性认知损害分类共识研究（Vascular Impair... 详细信息

引言血管性认知损害（vascular cognitive impairment,VCI）诊断共识的缺乏（体现为多种不同评估方案的使用）,妨碍了对其理解和治疗的推进.多个国家的大量临床医生和研究人员参与了2个阶段血管性认知损害分类共识研究（Vascular Impairment of Cognition Classification Consensus Study,VICCCS）,旨在就VCI的诊断原则（VICCCS-1）和诊断方案（VICCCS-2）达成一致意见.本文提供了VICCCS-2的相关内容.方法使用VICCCS-1达成的原则和已发表的诊断指南作为在线德尔菲（Delphi）调查的参考基点,以期对VCI的临床诊断达成共识.结果共进行了6轮调查,每轮有65～79名专家参与,他们就VICCCS修订的轻度和重度VCI的诊断指南达成共识,并肯定了美国国立神经疾病与卒中研究所-加拿大卒中网（National Institute of Neurological Disorders and Stroke–Canadian Stroke Network,NINDS-CSN）发布的神经心理学评估方案和对影像学检查的推荐意见.讨论VICCCS-2建议规范化应用NINDS-CSN推荐的神经心理学和影像学评估方案诊断VCI,以促进研究协作.

关键词：血管性认知损害血管性痴呆指南标准共识德尔菲法

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