Managing agitation and raising quality of life: semi structured interviews with family carers of people living with dementia

18 face-to-face semi-structured interviews with family carers of people living with moderate to severe dementia still living at home. Respondents were asked to describe their experiences of caring for the person living with dementia and especially coping around agitation or distress behaviours. 11 respondents had a spousal relationship with the person living with dementia; 6 were children or children-in-laws; and 1 was a sibling. The age range of respondents is 35 to 84 years old. 14 recorded their ethnicity as white, one as Asian, three as black. 11 respondents were women. Two had been caring for the person living with dementia for more than 10 years; 6 for 1-3 years; 4 for 5-10 years; and 4 for 3- 5 years. 2 had been carers for less than a year at the time of interviewing. Interview schedule: Looking back, when did you first notice the signs of the memory problems? So, how were things ok before that? How have you found the experience of caring for …….? Was there any help or support available to you at those times? Could you tell me a bit/ a bit more about situations related to your relative/friend’s symptoms of agitation and dementia? When did your relative/friend start to show symptoms of agitation? How did this affect your experience as a carer What symptoms of agitation did you observe? What was it like for you? What was it like for your relative/friend? Were/ are there any particular ways you dealt/ deal with your experiences of agitated behaviour then/ now? Did you seek any help for managing the agitated behaviour? Looking back how do you feel about the episodes of agitated behaviour that occurred? Do you have any advice that you could give to people going through the same difficulties? Is there anything else that you want to mention about how you coped with your relative/friend’s agitation?

本数据集包含18项面向居家居住的中重度痴呆（dementia）患者家庭照料者的面对面半结构化访谈（semi-structured interviews）。研究者要求受访者详述其照料痴呆患者的经历，尤其聚焦于应对激越行为（agitation）与痛苦行为（distress behaviours）的相关过程。其中11名受访者与痴呆患者为配偶关系，6名为患者的子女或儿媳/女婿，1名为患者的兄弟姐妹。受访者年龄介于35岁至84岁之间；自报种族方面，14人为白人，1人为亚裔，3人为黑人；受访者中11名为女性。照料时长分布如下：2名受访者在受访时已照料患者超过10年，6名照料时长为1至3年，4名为5至10年，4名为3至5年，另有2名受访者在受访时照料时长不足1年。本次研究的访谈提纲包含以下问题：
1. 回顾过往，你最初注意到记忆障碍迹象是在什么时候？
2. 在此之前的情况如何？
3. 你对照料……的经历有何感受？
4. 彼时你是否获得过任何帮助或支持？
5. 能否请你详细谈谈与你亲属/朋友的痴呆及激越症状相关的场景？
6. 你的亲属/朋友何时开始出现激越症状？
7. 这对你的照料者身份带来了何种影响？
8. 你观察到了哪些激越症状？
9. 你自身的感受如何？
10. 你的亲属/朋友的感受如何？
11. 当时或如今你有哪些特定的方式来应对激越行为带来的困扰？
12. 你是否曾寻求过帮助以管理激越行为？
13. 回顾过往，你如何看待此前发生的激越行为事件？
14. 你是否有建议可以提供给正经历相同困境的人群？
15. 关于你应对亲属/朋友激越行为的经历，还有什么想要补充说明的吗？