Knowledge of Dementia: Do family members understand dementia as a terminal condition?
Knowledge of Dementia: Do family members understand dementia as a terminal condition?
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DOI：
10.1177/1471301215605630
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发表时间：
2017-07-01
影响因子：
2.4
通讯作者：
Robinson, Andrew
中科院分区：
文献类型：
--
作者：
Andrews, Sharon;McInerney, Fran;Robinson, Andrew
目前的研究确定晚期痴呆症是这种渐进且无法治愈的疾病的最后阶段。然而，对于晚期痴呆症患者的家人如何了解其亲属的病情的调查相对较少。在本文中，我们报道了对一家住宅老年护理机构中 10 名晚期痴呆症患者家庭成员的半结构化访谈。我们采用定性、描述性设计，探讨了家庭成员对痴呆症的理解，他们是否意识到这是一种绝症，以及他们发展理解的方式。调查结果显示，大多数家庭成员无法认识到痴呆症的晚期性质。他们主要依靠外行的理解，几乎无法获得正式信息，而且大多数人未能概念化痴呆症与死亡之间的联系。此外，尽管他们的亲属已处于疾病晚期，但家庭成员与老年护理人员就这些问题进行了有限的对话。我们的研究结果表明，家庭成员如何了解亲属的病情需要更多关注。发展工作人员/家庭伙伴关系，促进有关痴呆症和死亡的共同沟通，可能会增强家庭成员对痴呆症轨迹以及他们在疾病更晚期阶段可能面临的决策类型的理解。
Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative's condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members' understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative's condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members' understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease.