Rotman Research Institute, Baycrest, 3560 Bathurst Street, 8th Floor Brain Health Complex, Toronto, Ontario, M6A 2E1, Canada.
Can J Neurol Sci. 2011 Sep;38(5):753-7. doi: 10.1017/s0317167100054147.
To guide development of public awareness and caregiver support resources for frontotemporal dementia (FTD) syndromes.
We used an online survey to explore their needs. The survey was self-administered by self-identified, English-speaking caregivers for patients with FTD in several countries.
Of 79 caregiver respondents, approximately half were caring for patients with behavioural variant FTD or semantic dementia. The most common initial symptoms were Changes in Thinking and Judgment. Half of the respondents identified "failure to recognize the early stage of illness as a dementia" as the most troublesome aspect. Accordingly, over 40% of respondents had difficulty obtaining an accurate diagnosis for the patient. Caregivers prioritized family counseling and the public educational message that dementia can affect young people.
The largest international survey of FTD caregivers to-date showed that support is needed for all family members adapting to the shock of early-onset dementia, and this may be most readily provided online.
为额颞叶痴呆（FTD）综合征相关公众意识和护理人员支持资源的开发提供指导。
我们使用在线调查来探索他们的需求。该调查由来自多个国家的、自我认定的、讲英语的 FTD 患者护理人员自行管理。
在 79 名护理人员应答者中，约有一半在照顾行为变异型 FTD 或语义性痴呆患者。最常见的初始症状是思维和判断的改变。一半的应答者认为“未能认识到疾病的早期阶段是一种痴呆”是最麻烦的方面。因此，超过 40%的应答者难以为患者做出准确的诊断。护理人员优先考虑家庭咨询以及公众教育信息，即痴呆症可能会影响年轻人。
迄今为止针对 FTD 护理人员的最大规模国际调查显示，所有适应早发性痴呆症冲击的家庭成员都需要支持，而这可能最容易通过网络提供。
