Mapping the Dynamics of Caregiver Burden in Alzheimer's Disease

摘要和摘要 在这个指导研究中，科学家职业发展奖(K01)描绘了护理者的动态 阿尔茨海默病的负担，医学人类学家和卫生政策研究员艾丽莎·伯恩斯坦博士， 公共卫生硕士，总部设在加州大学旧金山分校，要求研究和工资支持提供 在她转变为一名独立调查员的过程中，受到保护的时间和专门的指导培训。Dr。 伯恩斯坦的目标是培养成为一名独立调查员所需的技能和知识 使用混合方法来了解和解决在临床实践的交叉点发生的挑战， 社区，以及痴呆症的政策。本申请中提出的研究项目侧重于挑战 作为迈向长期职业目标的第一步，她对照顾者的幸福感感到满意。通过这个项目，伯恩斯坦博士 旨在将有关个人照顾者的社会和环境状况的知识与 将阿尔茨海默氏症转化为对照顾者负担、恢复力和资源使用的理解。 要成为一名独立研究人员，伯恩斯坦博士将得到一个杰出的导师团队的支持 加州大学旧金山分校的临床医生和社会科学家研究人员，是一家世界级的研究和培训机构，拥有强大的 致力于多学科研究和临床实践，重点关注痴呆症、衰老和护理。Dr。 伯恩斯坦将利用这些资源通过以下方式发展以下领域的知识和技能 课程、研讨会、辅导教程和实践经验：(1)地理信息系统(GIS) 技术；(2)先进的混合方法研究和数据分析；(3)护理科学 痴呆症；(4)独立所需的专业晋升技能。 利用这些技能，这项拟议的研究评估了社交和情感体验以及空间 阿尔茨海默病(AD)患者的照顾者在家庭和社区中的流动。超过1500万 在美国，家人或朋友为AD或其他痴呆症患者提供照顾。许多照顾者 经历照顾者的负担，并处于社交孤立和孤独的高风险中，所有这些都可能 对健康和福祉的负面影响。然而，只有四分之一的照顾者获得支持资源。我们有 不完全了解如何干预照顾者在家庭和社区的经历，以减轻负担。 这项拟议的研究将通过以下方式在AD患者的配偶照顾者中进行 研究目的：(1)绘制和分析与老年人同住的家庭照料者的客观空间活动 阿尔茨海默病；(2)检查和表征家庭照顾者的主观社会网络和情绪 体验；以及(3)创建和分析目标空间数据和 主观社会经验，以确定潜在的干预措施。这项研究将在以下方面提供指导 设计综合了定性和空间分析的干预措施，以改善照顾者的福祉。

SUMMARY AND ABSTRACT In this Mentored Research Scientist Career Development Award (K01) Mapping the Dynamics of Caregiver Burden in Alzheimer's Disease, medical anthropologist and health policy researcher Dr. Alissa Bernstein, PhD, MPH, based at the University of California, San Francisco, requests research and salary support to provide protected time and dedicated mentored training in her transition to becoming an independent investigator. Dr. Bernstein's goal is to build the skills and knowledge required to become an independent investigator who can use mixed methods to understand and address challenges that occur at the intersection of clinical practice, the community, and policy in dementia. The research project proposed in this application focuses on the challenge of caregiver wellbeing as a first step towards her long-term career objective. Through the project, Dr. Bernstein aims to integrate knowledge about the social and environmental conditions of caregivers of individuals with Alzheimer's disease into understandings of caregiver burden, resilience, and resource use. To become an independent researcher, Dr. Bernstein will be supported by an outstanding mentorship team of clinicians and social scientist researchers at UCSF, a world-class research and training institution with a strong commitment to multidisciplinary research and clinical practice focused on dementia, aging, and caregiving. Dr. Bernstein will utilize these resources to develop knowledge and skills in the following areas through coursework, seminars, mentored tutorials, and practical experience: (1) Geographic Information Systems (GIS) technology; (2) Advanced mixed-methods research and data analysis; (3) The science of caregiving in dementia; (4) Professional advancement skills required for independence. Using these skills, the proposed research assesses the social and emotional experiences and spatial movement of caregivers of people with Alzheimer's disease (AD) in the home and community. Over 15 million family members or friends provide care for individuals with AD or other dementias in the U.S. Many caregivers experience caregiver burden, and are at a high risk for social isolation and loneliness, all of which can have negative impacts on health and wellbeing. Yet, only a quarter of caregivers access support resources. We do not fully understand how to intervene in caregivers' experiences in the home and community to reduce burden. The proposed research will be conducted amongst spousal caregivers of people with AD through the following research aims: (1) Map and analyze the objective spatial activity of family caregivers living with people with Alzheimer's disease; (2) Examine and characterize family caregivers' subjective social networks and emotional experiences; and (3) Create and analyze integrated visual representations of objective spatial data and subjective social experiences to identify potential interventions. This research will provide guidance in designing interventions integrating qualitative and spatial analyses to improve caregiver wellbeing.