Muders Pia, Zahrt-Omar Corinna Aruna, Bussmann Sonja, Haberstroh Julia, Weber Martin
Interdisciplinary Palliative Care Unit,III. Department of Medicine,University Medical Center of the Johannes Gutenberg University of Mainz,Mainz,Germany.
Interdisciplinary Ageing Research,Faculty of Educational Sciences,Goethe University,Frankfurt am Main,Germany.
Palliat Support Care. 2015 Jun;13(3):435-42. doi: 10.1017/S1478951513001107. Epub 2014 Feb 13.
To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them.
We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods.
Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process.
Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.
探讨并记录痴呆临终患者家庭照顾者的需求，并确定医疗保健专业人员如何充分支持他们。
我们采用了一项包含开放式问题的横断面调查，并使用定性方法进行分析。
对于患有痴呆症临终患者的照顾家庭来说，了解痴呆症的诊断和疾病发展轨迹信息至关重要。然而，目前专业人员提供的信息沟通并不令人满意。需要改进的其他方面涉及时间限制问题，以及护理环境中专业人员提供的实际和情感支持。家庭成员还希望专业人员在临终过程中及之后能更好地帮助他们。
家庭成员在照顾痴呆亲属时面临多重负担，在疾病发展过程以及终末期需要更多专业支持。
