早发性痴呆症的需求：来自 NeedYD 研究的定性案例。
Needs in early onset dementia: A qualitative case from the NeedYD study.
机构信息
Centre for Specialized Care in Early Onset Dementia, Rijswijk, The Netherlands.
出版信息
Am J Alzheimers Dis Other Demen. 2010 Dec;25(8):634-40. doi: 10.1177/1533317510385811.
Abstract
OBJECTIVES
The aim was to explore the experiences of a caregiver of a patient with early onset dementia (EOD) and the needs of patient and caregiver.
METHODS
A single case study design was used to explore (1) unmet needs of patient and caregiver and (2) caregiver's experiences of transitions in care and health care services. A qualitative analysis was used to examine the data.
RESULTS
This study shows that a patient with EOD and the caregiver were confronted with specific issues during the care process, namely (1) prolonged time to diagnosis, (2) a lack of fit between needs and services, (3) the strain of dedication to care versus the caregiver's own future perspective, (4) the need for response of health care services to changing individual preferences.
CONCLUSION
This study illustrates specific issues related to early onset dementia that require specialized EOD care such as the differential and changing needs of patients and caregivers.
摘要
目的
旨在探讨一位早发性痴呆（EOD）患者的照料者的体验以及患者和照料者的需求。
方法
采用单案例研究设计，探讨（1）患者和照料者未满足的需求，以及（2）照料者在护理和医疗服务方面的转变体验。采用定性分析对数据进行检验。
结果
本研究表明，EOD 患者和照料者在护理过程中面临着特定问题，即（1）诊断时间延长，（2）需求与服务不匹配，（3）对护理的投入与照料者自身未来前景之间的紧张关系，（4）医疗服务需要针对个人偏好的变化做出反应。
结论
本研究说明了与早发性痴呆相关的具体问题，这些问题需要专门的 EOD 护理，例如患者和照料者的差异化和变化的需求。
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