Supporting a family living with young-onset dementia: a case study

Jules Knight, Amy Pepper
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Abstract

In the UK, it is estimated that people living with young-onset dementia (YOD) accounts for a small, but significant, number of the total population living with dementia. The diagnosis happens at an unexpected time in one's life, and as a life-limiting condition, there are implications for the whole family, including managing employment, finances and debt, supporting dependent children and accessing age-appropriate support services. YOD causes a disproportionate burden on family members and appropriate care services can be challenging to find. The case study discussed follows a family's journey from pre-diagnosis, to subsequently engaging with the Admiral Nurse Helpline and then an Admiral Nurse in the family's locality, and considers the issues and challenges faced by them.
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为年轻痴呆症患者家庭提供支持:案例研究
据估计,在英国,幼年痴呆症(YOD)患者占痴呆症患者总人数的一小部分,但也占了相当大的比例。诊断发生在一个人生命中意想不到的时刻,作为一种限制生命的疾病,它对整个家庭都有影响,包括管理就业、财务和债务,抚养受抚养子女,以及获得与年龄相适应的支持服务。YOD 给家庭成员造成了过重的负担,要找到合适的护理服务也很困难。本案例研究讨论了一个家庭从诊断前到后来与海军上将护士帮助热线以及家庭所在地的海军上将护士接触的过程,并探讨了他们所面临的问题和挑战。
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