Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/no, multiple‐response and open‐ended questions, was codesigned with people living with young onset dementia. The survey was promoted via networks and online platforms. Data were collected from August to October 2019. Survey respondents across the United Kingdom (n = 55) who had received a diagnosis of young onset dementia were aged between 45 and 64, were at different stages of dementia and had been diagnosed with thirteen different types of dementia. Of the 55 respondents, 71% (n = 39) had received assistance from family members when completing the survey. The main financial impact of a diagnosis of young onset dementia resulted from premature loss of income and reduced and often deferred pension entitlements. In some cases, care‐costs became unaffordable. Lack of clarity of processes and procedures around needs assessments, carers' assessments and financial assessments by different organisations resulted in some families having to ask for legal advice and, in some cases, involved lengthy appeal processes. Future research needs to involve Adult Social Care and Third Sector organisations to help codesign and test financial management interventions to support people affected by this progressive health condition.

中文翻译：

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了解英国青年痴呆症诊断对个人和家庭的财务影响：在线调查结果

尽管有关为受年轻痴呆症影响的人提供诊断后支持的文献承认经济问题，但该主题仍未得到充分研究。本研究的目的是探讨诊断为年轻发病的痴呆症对个人和家庭的财务影响。一项在线调查包括二元是/否、多选题和开放式问题，是与年轻痴呆症患者共同设计的。该调查通过网络和在线平台进行推广。数据收集时间为 2019 年 8 月至 2019 年 10 月。 英国各地接受调查的受访者 ( n =  55) 年龄在 45 至 64 岁之间，处于不同阶段的痴呆症，并被诊断出患有 13 种不同类型的痴呆症痴呆症。在 55 名受访者中，71% (n =  39) 在完成调查时得到了家庭成员的帮助。诊断为年轻发病的痴呆症的主要财务影响是由于过早失去收入和减少并经常推迟领取养老金。在某些情况下，护理费用变得无法负担。不同组织围绕需求评估、照顾者评估和财务评估的流程和程序缺乏明确性，导致一些家庭不得不寻求法律建议，在某些情况下，还涉及冗长的上诉程序。未来的研究需要涉及成人社会关怀和第三部门组织，以帮助共同设计和测试财务管理干预措施，以支持受这种渐进式健康状况影响的人们。