Manderson Lenore, Brear Michelle, Rusere Farirai, Farrell Meagan, Gómez-Olivé Francesc Xavier, Berkman Lisa, Kahn Kathleen, Harling Guy
School of Public Health, University of the Witwatersrand, Johannesburg, South Africa.
School of Social Sciences, Monash University, Clayton, Australia.
Wellcome Open Res. 2022 Aug 25;7:220. doi: 10.12688/wellcomeopenres.18078.1. eCollection 2022.
With aging, many people develop Alzheimer's disease or related dementias (ADRD) as well as chronic physical health problems. The consequent care needs can be complicated, with heavy demands on families, households and communities, especially in resource-constrained settings with limited formal care services. However, research on ADRD caregiving is largely limited to primary caregivers and high-income countries. Our objectives are to analyse in a rural setting in South Africa: (1) how extended households 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 Agincourt health and socio-demographic surveillance system site of the MRC/Wits Rural Public Health and Health Transitions Research Unit in Mpumalanga Province, northeast South Africa. We will recruit 100 index individuals predicted to currently have ADRD or cognitive impairment using data from a recent dementia survey. Quantitative surveys will be conducted with each index person's nominated primary caregiver, all other household members aged over 12, and caregiving non-resident kin and non-kin to determine how care and health are patterned across household networks. Qualitative data will be generated through participant observation and in-depth interviews with caregivers, select community health workers and key informants. Combining epidemiological, demographic and anthropological methods, we will build a rich picture of households of people with ADRD, focused on caregiving demands and capacity, and of caregiving's effects on health.
Our goal is to identify ways to mitigate the negative impacts of long-term informal caregiving for ADRD when formal supports are largely absent. We expect our findings to inform the development of locally relevant and community-oriented interventions to improve the health of caregivers and recipients, with implications for other resource-constrained settings in both higher- and lower-income countries.
随着年龄增长，许多人会患上阿尔茨海默病或相关痴呆症（ADRD）以及慢性身体健康问题。随之而来的护理需求可能很复杂，给家庭、家庭和社区带来沉重负担，尤其是在正规护理服务有限的资源受限环境中。然而，关于ADRD护理的研究主要局限于主要护理人员和高收入国家。我们的目标是在南非农村地区进行分析：（1）大家庭如何为ADRD患者提供护理；（2）护理角色如何影响所有护理人员的健康和福祉。
该研究将在南非东北部姆普马兰加省MRC/威特沃特斯兰德大学农村公共卫生与健康转型研究单位的阿金库尔健康与社会人口监测系统站点进行。我们将利用最近一项痴呆症调查的数据，招募100名预计目前患有ADRD或认知障碍的索引个体。将对每位索引人员指定的主要护理人员、所有其他12岁以上的家庭成员以及提供护理的非居民亲属和非亲属进行定量调查，以确定家庭网络中护理和健康的模式。定性数据将通过参与观察以及对护理人员、选定的社区卫生工作者和关键信息提供者的深入访谈生成。结合流行病学、人口统计学和人类学方法，我们将全面了解ADRD患者家庭的情况，重点关注护理需求和能力，以及护理对健康的影响。
我们的目标是确定在基本没有正规支持的情况下，减轻长期非正式护理ADRD带来的负面影响的方法。我们期望我们的研究结果能为制定与当地相关且以社区为导向的干预措施提供参考，以改善护理人员和接受护理者的健康，这对高收入和低收入国家的其他资源受限环境也有启示意义。
