Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience/Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, The Netherlands.
Int Psychogeriatr. 2011 Nov;23(9):1393-404. doi: 10.1017/S1041610211001013. Epub 2011 Jul 1.
Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers.
Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample.
Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis.
EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals' inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.
识别和诊断早发性痴呆（EOD）可能很复杂，通常比诊断晚发性痴呆花费的时间更长。本研究的目的是调查诊断障碍，并为 EOD 照顾者的诊断途径开发一种类型学。
对 92 名 EOD 照顾者进行半结构化访谈，采用恒定比较分析和扎根理论进行分析。基于 21 次访谈形成了一个概念模型，并在 29 个额外的转录本中进行了测试。在整个样本中对确定的类别进行了量化。
出现了七个主题：（1）家庭成员的变化，（2）家庭生活中断，（3）归因错误，（4）否认和拒绝寻求建议，（5）缺乏社会背景的确认，（6）全科医生（GP）的不响应，（7）误诊。EOD 患者的认知和行为变化对照顾者来说是常见且难以理解的。婚姻困难、子女问题和工作/财务问题是重要话题。家庭成员的确认和对工作中问题的认识，对于照顾者注意到缺陷和/或寻求帮助非常重要。其他主要问题是患者由于否认而拒绝寻求帮助，以及由于误诊而导致帮助不足。
EOD 照顾者在诊断前经历了一个漫长而艰难的时期。我们假设否认、拒绝寻求帮助、症状归因错误、社会背景缺乏确认、专业人员帮助不足和错误诊断会延长诊断前的时间。这些发现强调了医疗保健专业人员提供更快、更充分帮助的必要性，并为支持 EOD 患者的照顾者提供了关注的问题。
