School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University Medical Centre, P.O. Box 616, 6200 MD Maastricht, The Netherlands.
Prog Neurobiol. 2013 Nov;110:54-62. doi: 10.1016/j.pneurobio.2013.04.005. Epub 2013 May 17.
In the absence of disease modifying therapies for dementia, the question rises what the benefits are of an early dementia diagnosis for patients and their caregivers. This paper reviews the caregiver perspective in dementia and addresses the question what the consequences are of promoting earlier dementia diagnosis. An early diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role. Caregivers that are better able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems. However, drawbacks of an early diagnosis may outweigh the benefits if people are left with a diagnosis but little support. There is convincing evidence that multicomponent caregiver interventions in the mild to moderate dementia stages are effective to improve caregiver well-being and delay institutionalization. However, there still exist a gap between the improved possibilities to diagnose people in the predementia stage versus the scarce knowledge on intervention effects in this very early stage. This stresses the urgent need for more research on early caregiver interventions that enhance role adaptation and that include long-term follow-up and cost-effectiveness evaluation. Early interventions may help caregivers in anticipating and accepting the future care role and transitions, with the increased possibility that caregivers can still involve the patient in the decision making process. As levels of stress and burden are still low in the predementia stage it provides excellent opportunities to empower the resources of caregivers.
在没有治疗痴呆症的方法的情况下,人们提出了一个问题,即早期诊断痴呆症对患者及其护理人员有什么好处。本文回顾了痴呆症护理人员的观点,并探讨了促进早期痴呆症诊断的后果。早期诊断为护理人员提供了提前适应护理角色的机会。能够更好地适应痴呆症特征变化的护理人员,会感到更有能力照顾患者,并且心理问题更少。但是,如果人们只得到诊断但缺乏支持,那么早期诊断的弊端可能超过其益处。有令人信服的证据表明,在轻度至中度痴呆阶段对护理人员进行多方面的干预措施,可以有效改善护理人员的幸福感并延缓其入院治疗。但是,与痴呆前期阶段人们提高诊断能力的可能性相比,针对这一早期阶段干预效果的知识仍然匮乏。这强调了迫切需要对早期护理人员干预措施进行更多研究,这些干预措施可以增强角色适应能力,并包括长期随访和成本效益评估。早期干预可以帮助护理人员预测和接受未来的护理角色和过渡,并且增加了护理人员仍然可以让患者参与决策过程的可能性。由于在痴呆前期阶段压力和负担水平仍然较低,因此为增强护理人员的资源提供了极好的机会。