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早发性阿尔茨海默病患者家庭中的幼儿:研究空白和新出现的服务需求。

Young children in early-onset Alzheimer's disease families: research gaps and emerging service needs.

机构信息

City University of New York, NY 10075, USA.

出版信息

Am J Alzheimers Dis Other Demen. 2011 Feb;26(1):29-35. doi: 10.1177/1533317510391241.

DOI:10.1177/1533317510391241
PMID:21282275
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10845588/
Abstract

Early-onset Alzheimer's disease (EOAD), defined as affecting those under age 65, afflicts between 200,000 and 500,000 people in the US. EOAD tends to be a fast-progressing and aggressive form of AD. There is a beginning body of research exploring EOAD patients' experience and needs, as well as that of their primary family caregivers, often spouses. However, there has been very little written about the experience and needs of EOAD patients' children, who because of the early onset, and increasing postponement of childbearing, may be latency-aged or in their early teens. This paper reviews existing and related literature in this area, and illustrates the psychosocial impact on children using the case of a 50 year-old father diagnosed with AD and his 16 year-old daughter and 11 year-old son. The need for increased research and program development to address these children's needs is discussed.

摘要

早发性老年痴呆症(EOAD)定义为影响 65 岁以下的人群,在美国影响着 20 万到 50 万人。EOAD 往往是一种快速发展和侵袭性的 AD 形式。目前已经有一定数量的研究探索了 EOAD 患者及其主要家庭照顾者(通常是配偶)的经历和需求。然而,对于 EOAD 患者的子女的经历和需求却几乎没有任何描述,由于发病早和生育推迟,这些子女可能处于潜伏期或青少年早期。本文回顾了这一领域的现有和相关文献,并通过一位被诊断患有 AD 的 50 岁父亲及其 16 岁的女儿和 11 岁的儿子的案例说明了对子女的心理社会影响。需要增加研究和项目开发来满足这些孩子的需求。

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本文引用的文献

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Dementia: psychosocial interventions for family caregivers.痴呆症:针对家庭照顾者的心理社会干预措施。
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Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer.应对、社会关系与沟通:对父母患癌儿童的质性探索性研究
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