26697Stellenbosch University, Stellenbosch, South Africa.
Dementia (London). 2022 Oct;21(7):2264-2287. doi: 10.1177/14713012221118441. Epub 2022 Aug 13.
This study was undertaken to understand South African family caregivers' lived experiences of individuals living with dementia in a predominantly Black African township. A homogenous sample of thirty family caregivers was recruited using purposeful sampling methods and interviewed using a semi-structured approach. Reflective Thematic Analysis (RTA) yielded four broad themes: Findings reflect how dementia is understood by family caregivers and their community, the struggles and sacrifices that they endure, the impact of caregiving on caregiver mental health and the protective factors that enable caregivers to cope, despite their difficulties. Our findings lead to new insights regarding dementia caregiving amongst family caregivers in South Africa. First, there appears to be a shift in perception - away from a cultural/spiritual paradigm - and a lack of pressure to conform to community conceptualizations of dementia among individual caregivers. Second, dementia caregiving had a negative effect on caregiver mental health and elicited stress, anxiety and grief reactions. Third, caregivers did not feel emotionally supported and expressed not receiving any assistance with their daily practical tasks. Fourth, before receiving a diagnosis, family caregivers were viewed as the perpetrators of abuse and/or neglect against their family members with dementia, instead of individuals with dementia being stigmatized by the community due to their behavioural symptoms. Additionally, help-seeking was not hindered by fear or stigma, but was motivated by caregiver distress as dementia-related behaviours began to manifest and caregivers feared being perceived as perpetrators of abuse. Psychoeducational interventions should be tailored to targeted population groups that are in need of further training to address the lack of awareness in communities, insufficient knowledge of dementia amongst healthcare professionals and the practical, emotional and psychological difficulties that family caregivers endure to facilitate mental health care and resilience.
本研究旨在了解南非主要是黑非洲城镇中，痴呆症患者的家庭照顾者的生活体验。通过目的性抽样方法招募了 30 名同质的家庭照顾者样本，并采用半结构式方法进行访谈。反思性主题分析（RTA）得出了四个广泛的主题：研究结果反映了家庭照顾者及其社区对痴呆症的理解、他们所承受的困难和牺牲、照顾对照顾者心理健康的影响以及使照顾者能够应对困难的保护因素。我们的研究结果为南非家庭照顾者的痴呆症护理提供了新的见解。首先，似乎有一种观念上的转变——从文化/精神范式转变——以及个人照顾者对社区对痴呆症的概念化缺乏压力。其次，痴呆症照顾对照顾者的心理健康产生了负面影响，并引起了压力、焦虑和悲伤反应。第三，照顾者没有感到情感上的支持，也没有表示得到任何帮助完成日常实际任务。第四，在得到诊断之前，家庭照顾者被视为虐待和/或忽视其痴呆症家庭成员的人，而不是因为他们的行为症状而使社区对痴呆症患者产生污名化。此外，寻求帮助并不是因为恐惧或耻辱，而是因为痴呆症相关行为开始表现出来，照顾者担心被视为虐待者而感到痛苦。应该针对需要进一步培训的目标人群量身定制心理教育干预措施，以解决社区缺乏意识、医疗保健专业人员对痴呆症的了解不足以及家庭照顾者所承受的实际、情感和心理困难，以促进心理健康护理和恢复力。
