Faculty of Nursing University of Alberta, 4-141 ECHA, 11405 87th Ave, Edmonton, AB, T6G 1C9, Canada.
Faculty of Health Sciences, McMaster University, 1280 Main St. W, Hamilton, ON, L8S4K1, Canada.
BMC Geriatr. 2022 Jul 1;22(1):551. doi: 10.1186/s12877-022-03236-8.
Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers' experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers.
Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data.
FINDINGS/RESULTS: Carers dealt with the significant changes they experienced through the process of "building a new life" consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life.
The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.
长期护理（LTC）中居住的痴呆症患者的家庭照顾者经常经历角色和关系的重大变化，这会影响他们的身心健康。研究重点是描述照顾者的体验，但没有描述他们如何应对这些变化或他们对支持需求的看法。本研究旨在探讨居住在 LTC 中的痴呆症患者的家庭照顾者如何应对重大变化，并了解如何最好地支持这些照顾者。
2019 年 9 月至 2020 年 1 月期间，作为旨在指导适应支持居住在 LTC 中的痴呆症患者的家庭照顾者的在线工具包的更大研究的一部分，进行了 8 次面对面的音频记录焦点小组访谈，共有 45 名参与者参加。应用主题分析对焦点小组数据进行了分析。
照顾者通过“建立新生活”的过程来应对他们所经历的重大变化，该过程包括两个子过程：a）建立新的关系（与他们的家庭成员、LTC 工作人员和 LTC 以外的其他人），b）为自己找到空间（分担照顾和寻求平衡）。了解痴呆症、来自他人（工作人员、家人和朋友）的支持、与资源建立联系以及参与照顾决策有助于照顾者建立新生活。
建立新生活的过程描述了家庭照顾者在家庭成员被安置到 LTC 时应对生活发生重大变化的方式。通过向他们提供有关痴呆症以及如何与工作人员和他们的痴呆症家庭成员相处的信息，可以为照顾者建立新的生活提供支持。护理的质量和 LTC 环境也可能在照顾者应对他们所经历的重大变化方面发挥重要作用。
