Institute of Public Health, Aarhus University, Aarhus, Denmark.
J Clin Nurs. 2013 Nov;22(21-22):3024-31. doi: 10.1111/jocn.12131. Epub 2013 Mar 13.
To examine the experiences of relatives of a spouse or parent who suffers from dementia and examines whether there are similarities or differences between these experiences.
Dementia is an increasing illness in the world. Dementia affects not only the person with dementia but also the relatives. There is a lack of knowledge about the experience of being a relative to a dementia-suffering person.
Twenty-one stories from relatives were included in this study, and these stories were analysed by employing Kirsti Malterud's method 'systematic text condensation'. The relatives were divided into four groups: sons, husbands, daughters and wives.
Eight themes were identified in their stories, two in each of the four groups. From these eight themes, it was identified that they all experienced change, grief and negative personal sentiments. However, differences were also found, one of them being that the sons found it easier to adapt to new roles during the course of the illness, while the daughters found it more difficult. The husbands experienced being attacked by the people around them, while the wives were found to submit their dementia-suffering husbands to physical abuse. The wives also suffered from self-criticism.
The similarities between the four groups are more significant than the differences. Sons, husbands, daughters and wives of a person suffering from dementia should be considered on an equal basis in terms of their experiences of grief, change and personal negative sentiments.
Relatives play a significant role in the well-being of their parent or spouse suffering from dementia. Therefore, professionals need to focus on both relatives and patient when they meet a person with dementia in clinical practice.
研究配偶或父母一方患有痴呆症的亲属的经历，并检查这些经历是否存在相似之处或差异。
痴呆症是全球日益增多的疾病。痴呆症不仅影响痴呆症患者，还影响其亲属。对于作为痴呆症患者亲属的经历，人们知之甚少。
这项研究纳入了 21 位亲属的故事，并采用 Kirsti Malterud 的“系统文本凝聚”方法对这些故事进行了分析。将亲属分为四个群体：儿子、丈夫、女儿和妻子。
在他们的故事中确定了八个主题，每个群体有两个。从这八个主题中，可以发现他们都经历了变化、悲伤和负面的个人情绪。然而，也发现了一些差异，其中之一是儿子在疾病过程中更容易适应新角色，而女儿则更困难。丈夫感到周围的人在攻击他们，而妻子发现自己将患有痴呆症的丈夫置于身体虐待之下。妻子也受到自我批判的困扰。
四个群体之间的相似之处比差异更为显著。患有痴呆症的人的儿子、丈夫、女儿和妻子在悲伤、变化和个人负面情绪方面的经历应被视为平等。
亲属在患有痴呆症的父母或配偶的幸福中起着重要作用。因此，专业人员在临床实践中遇到患有痴呆症的人时，需要同时关注亲属和患者。
