The Complexity of Informal Caregiving for Alzheimer's Disease and Related Dementias in Rural South Africa

项目摘要 随着全球越来越多的人老龄化，许多人患上阿尔茨海默病或相关痴呆症 （ADRD）以及身体健康问题。随之而来的护理需求可能会很复杂，影响 家庭内外，特别是在资源有限的社区， 缺乏然而，关于ADRD治疗影响的研究主要限于主要照顾者， 高收入国家。我们的长期目标是找到减轻长期气候变化负面影响的方法。 在这样的社区中为ADRD提供支持，以便开发新的方法来支持户主和其他人， 照顾者本研究的目的是分析：（1）大家庭如何谈判和提供 对ADRD患者的护理;（2）护理角色如何影响所有护理人员的健康和福祉。 这项研究将在已建立的阿金库尔卫生和社会人口监测系统进行 （HDSS），该公司与当地 人口南非农村是检查ADRD的理想选择，因为痴呆症的患病率正在上升， 对痴呆症的了解有限，正规护理有限，家庭结构和社交网络 由于贫困、快速的社会变革、循环移徙和共病状况， 允许仔细检查护理的星座。非洲健康与老龄化 （HAALSI）队列嵌套在HDSS内，我们将招募100名索引参与者，他们已在临床上 筛查痴呆症并确认有认知障碍或ADRD。进行这项研究 在已建立的HDSS研究平台内，结合临床和社会流行病学， 对痴呆症的研究，将最大限度地发挥我们的影响。我们将结合联合收割机的定性观察数据， 家庭活动和深入访谈定量调查，以确定护理模式， 居民、非居民亲属和非亲属健康状况。我们还将分析社区限制， 使用关键线人访谈的支持系统。我们将描述如何决定分配角色， 及其对身体、精神、社会和经济的影响，受到以下因素的影响： （B）家庭组成，包括因循环经济而发生的变化 移徙和死亡率;（c）家庭经济福利和压力;（d）外部非正规和正规经济 护理支助来源，包括家庭的广泛社交网络。结合流行病学， 人口和人类学方法，我们将建立一个丰富的图片， ADRD患者家庭的结局，以及随着社交网络的变化对护理人员的影响， 反应我们希望我们的研究结果能够为未来关于ADRD治疗如何影响的纵向研究提供信息。 家庭和社区，以便制定面向社区的人际和结构干预措施 以改善照顾者和接受者的健康。这项研究将产生关于非正式和 正规教育，与较贫穷和较富裕国家的其他资源贫乏环境有关。

PROJECT SUMMARY As growing numbers of people age globally, many develop Alzheimer's disease or related dementias (ADRD) as well as physical health problems. The consequent care needs can be complicated, affecting households and beyond, particularly in resource-constrained communities where formal care services are lacking. However, research on the impact of ADRD caregiving is largely limited to primary caregivers and high-income countries. Our long-term goal is to identify ways to mitigate the negative impacts of long-term caregiving for ADRD in such communities, so to develop novel ways to support householders and other caregivers. Our objectives in this study are to analyze: (1) how extended households negotiate and provide care to people with ADRD; and (2) how the health and wellbeing of all caregivers are affected by care roles. The study will take place at the established Agincourt health and socio-demographic surveillance system (HDSS) in Mpumalanga, South Africa, which has successful long-term relationships with the local population. Rural South Africa is ideal for examining ADRD caregiving since dementia prevalence is rising, understanding of dementia is limited, formal care is limited, and household structures and social networks are diverse and in flux due to poverty, rapid social change, circular migration and comorbid conditions – all allowing careful examination of constellations of care. Drawing from the Health and Aging in Africa (HAALSI) cohort nested within the HDSS, we will recruit 100 index participants who have been clinically screened for dementia and confirmed to have cognitive impairment or ADRD. Conducting this research within an established HDSS research platform, in association with clinical and social epidemiological research on dementia, will maximize our likely impact. We will combine data from qualitative observation of household activities and in-depth interviews with quantitative surveys to determine patterns of care and health among residents, non-resident kin and non-kin. We will also analyze community constraints and support systems using key informant interviews. We will describe how decisions about caregiving roles, and their physical, mental, social and financial impacts, are influenced by such factors as: (a) the frequency, intensity and difficulty of care; (b) household composition, including changes due to circular migration and mortality; (c) household economic wellbeing and stress; and (d) external informal and formal sources of care support, including households' extended social networks. Combining epidemiological, demographic and anthropological methods, we will build a rich picture of caregiving demands, capacity and outcomes in households of people with ADRD, and effects on caregivers as social networks change in response. We expect our findings to inform future longitudinal research on how ADRD caregiving affects households and communities, so to develop community-oriented interpersonal and structural interventions to improve the health of caregivers and recipients. The research will generate novel data on informal and formal caregiving, relevant to other resource-poor settings in both poorer and richer countries.