Luscombe G, Brodaty H, Freeth S
Academic Department of Psychogeriatrics, Prince Henry Hospital, Sydney, Australia.
Int J Geriatr Psychiatry. 1998 May;13(5):323-30. doi: 10.1002/(sici)1099-1166(199805)13:5<323::aid-gps768>3.0.co;2-o.
To determine difficulties experienced by carers of younger people with dementia.
Cross-sectional questionnaire survey.
102 eligible carers of persons less than 65 years of age with dementia, recruited through support groups and clinicians' referrals.
Problems with diagnostic process; professionals/services consulted; psychological, physical, occupational and financial impact of illness on carers and children; use of and satisfaction with services.
Diagnostic problems were reported by 71% of carers. Mean time until diagnosis was 3.4 years (SD 2.8) after consulting 2.8 (1.4) professionals. Carers reported frustration (81%) and grief (73%). Adverse psychological effects were common, more so in female than male carers (p < 0.01). The younger the carer, the more psychological and physical effects were experienced (p < 0.01). Only 8% of carers considered that their children had encountered no problems because of the dementia. Of 61 working carers, 59% reduced their hours or stopped working after diagnosis, and 89% of all carers had experienced financial problems subsequent to diagnosis. Most carers (89%) had used a support service, but 25% had never used community support, 32% had never used respite. Proportions of carers rating services as good ranged between 43 and 100%.
Younger people with dementia, and their carers, face difficulties in obtaining a diagnosis. Carers also experience psychological problems, financial worries, loss of employment and family conflict, and their children are affected. Most carers had used services, but some dissatisfaction existed.
确定年轻痴呆症患者照料者所面临的困难。
横断面问卷调查。
通过支持小组和临床医生转诊招募的102名年龄小于65岁的痴呆症患者的合格照料者。
诊断过程中的问题；咨询过的专业人员/服务；疾病对照料者及子女的心理、身体、职业和经济影响；服务的使用情况及满意度。
71%的照料者报告存在诊断问题。在咨询2.8（1.4）名专业人员后，平均诊断时间为3.4年（标准差2.8）。照料者报告有挫败感（81%）和悲伤情绪（73%）。不良心理影响很常见，女性照料者比男性照料者更常见（p<0.01）。照料者越年轻，经历的心理和身体影响就越多（p<0.01）。只有8%的照料者认为他们的孩子没有因痴呆症而遇到任何问题。在61名在职照料者中，59%在诊断后减少了工作时间或停止工作，所有照料者中有89%在诊断后经历了经济问题。大多数照料者（89%）使用过支持服务，但25%从未使用过社区支持，32%从未使用过临时照料服务。将服务评为良好的照料者比例在43%至100%之间。
年轻痴呆症患者及其照料者在获得诊断方面面临困难。照料者还会经历心理问题、经济担忧、失业和家庭冲突，他们的孩子也会受到影响。大多数照料者使用过服务，但仍存在一些不满。
