Alzheimer's Indonesia, Jakarta, Indonesia.
Department of Health Policy, Care Policy and Evaluation Centre, London School of Economics and Political Science, London, UK.
Int J Geriatr Psychiatry. 2023 Dec;38(12):e6038. doi: 10.1002/gps.6038.
Many people with dementia are reliant on family caregivers to provide daily care to maintain quality of life and dignity. As a result, caregivers can experience increased burden, poorer health outcomes and increased stigma. To date, the experiences of caregivers of people with dementia has not been explored within an Indonesian context.
This study aims to understand the experience of caregivers of people with dementia in Indonesia and better understanding of the stigma associated with dementia.
This qualitative study is embedded within the Strengthening Responses to Dementia in Developing Countries project. Focus Group Discussions were held with dementia caregivers residing in Jakarta, Indonesia. Inductive thematic analysis was used to analyse the transcripts.
Nineteen caregivers of people with dementia participated in the Focus Group Discussions. Themes identified included: (1) Understanding of dementia, (2) Reaction to care, and (3) Seeking a diagnosis.
A perceived lack of understanding about dementia amongst the caregivers, ultimately shaped caregivers experience of care. This included negative reactions to care leading to internalised stigma (e.g., fear and shame). Misconceptions that dementia was due to spiritual and mystical reasons were particularly stigmatising.
In Indonesia, families are providing care to people with dementia in an environment in which there is a lack of understanding that can lead to misdiagnosis, feelings of fear and shame. Efforts to raise address stigma and misunderstanding among the general public and healthcare professionals could be of particular value to support people with dementia and reduce the fear and shame that they can experience.
许多痴呆症患者依赖家庭照顾者来提供日常护理，以维持生活质量和尊严。因此，照顾者可能会承受更大的负担，健康状况更差，并且更容易受到歧视。迄今为止，在印度尼西亚背景下，尚未探讨过痴呆症照顾者的经历。
本研究旨在了解印度尼西亚痴呆症照顾者的经历，并更好地了解与痴呆症相关的污名。
这项定性研究是在“加强发展中国家对痴呆症的应对措施”项目中进行的。在印度尼西亚雅加达，与痴呆症照顾者举行了焦点小组讨论。使用归纳主题分析对转录本进行分析。
19 名痴呆症患者的照顾者参加了焦点小组讨论。确定的主题包括：（1）对痴呆症的理解，（2）对护理的反应，和（3）寻求诊断。
照顾者对痴呆症的认识不足，最终影响了他们的护理体验。这包括对护理的负面反应导致内化的污名（例如，恐惧和羞耻）。认为痴呆症是由于精神和神秘原因引起的误解尤其具有污名化。
在印度尼西亚，家庭在缺乏理解的环境中为痴呆症患者提供护理，这可能导致误诊，产生恐惧和羞耻感。提高公众和医疗保健专业人员对污名和误解的认识的努力可能对支持痴呆症患者并减轻他们可能经历的恐惧和羞耻感特别有价值。
