Norwegian Centre for Research, Education and Service Development, Norway; Nordic School of Public Health, Sweden.
Dementia (London). 2013 Jul;12(4):410-24. doi: 10.1177/1471301211430647. Epub 2011 Dec 16.
The small number of existing studies confirms that people with early-onset dementia (EOD) need special assistance from the beginning and as the disease progresses. There is a need to develop services to respond to the specific needs of persons with EOD.
To find out how people experience living with early-onset dementia, and to assess the implications for practice and the development of further services.
Grounded theory, a qualitative method, with interviews of 20 informants (aged 54-67 years; 12 of them men) during 2010-2011.
One category, the process toward a dementia diagnosis, covered two subcategories; describing changes and being diagnosed. Another category fighting for dignity describes how the informants try to maintain their quality of life, covering two subcategories; intrapsychic challenges and social challenges.
Health services should give persons with EOD the ability to maintain contact with society and their voices should not be overlooked.
为数不多的现有研究证实，早发性痴呆症（EOD）患者从疾病开始到发展都需要特别的帮助。有必要开发服务来满足 EOD 患者的特殊需求。
了解人们患有早发性痴呆症的生活体验，并评估对实践和进一步服务发展的影响。
扎根理论，一种定性方法，对 20 名受访者（年龄 54-67 岁；其中 12 名为男性）进行了访谈，访谈时间为 2010 年至 2011 年。
一个类别是走向痴呆症诊断的过程，包括两个子类；描述变化和诊断。另一个类别是为尊严而战，描述了受访者如何努力保持生活质量，包括两个子类；内心的挑战和社会挑战。
卫生服务机构应该给予 EOD 患者与社会保持联系的能力，而不应忽视他们的声音。
