Mapping the Dynamics of Caregiver Burden in Alzheimer's Disease

绘制阿尔茨海默病护理人员负担的动态图

• 批准号: 10665646
• 负责人: Alissa Bernstein Sideman
• 金额: $ 13.04万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-06-15 至 2025-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10665646
• 关键词: Address; Aging; Alzheimer' s Disease; Anthropology; Applications Grants; Applied Research; Area; Behavior Therapy; Behavioral Mechanisms; California; Cardiovascular Diseases; Caregiver Burden; Caregiver support; Caregiver well-being; Caregivers; Caring; Communities; Counseling; Data; Data Analyses; Data Sources; Dedications; Dementia; Dementia caregivers; Disease; Doctor of Philosophy; Domestic Partners; Education; Elderly; Emotional; Engineering; Environment; Environmental Risk Factor; Ethnography; Family Caregiver; Family member; Fostering; Friends; Future; Geographic Information Systems; Geography; Goals; Health; Health Policy; Hearing; Home; Individual; Institution; Interdisciplinary Study; Intervention; Interview; K-Series Research Career Programs; Knowledge; Loneliness; Maps; Medical; Mental Depression; Mentors; Mentorship; Methods; Movement; Outcome; Personal Satisfaction; Persons; Physical activity; Pilot Projects; Policies; Provider; Public Health; Qualifying; Quality of life; Research; Research Methodology; Research Personnel; Research Project Grants; Resources; Risk; Sampling; San Francisco; Science; Scientist; Services; Social Network; Social Sciences; Social isolation; Social support; Spouse Caregiver; Surveys; Techniques; Time; Training; Typology; United States; Universities; Visual; Wages; care giving burden; career; caregiving; clinical practice; community setting; dementia risk; emotional experience; environmental intervention; experience; follow-up; high risk; improved; innovation; knowledge integration; mortality; multidisciplinary; novel strategies; resilience; skill acquisition; skills; social; social contact; social culture; social factors; social interventions; technology platform; therapy design; tool

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.

内容和摘要 在这个指导研究科学家职业发展奖（K 01）映射照顾者的动态 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，博士， 位于弗朗西斯科的加州大学的公共卫生硕士，要求提供研究和工资支持， 在她成为独立调查员的过渡过程中，有时间保护和专门的辅导培训。博士 伯恩斯坦的目标是建立所需的技能和知识，成为一个独立的调查员谁可以 使用混合方法来理解和解决在临床实践交叉点发生的挑战， 社区和痴呆症的政策。本申请中提出的研究项目重点关注挑战 作为实现其长期职业目标的第一步。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条件的知识与 老年痴呆症的理解照顾者的负担，弹性和资源使用。 为了成为一名独立的研究人员，伯恩斯坦博士将得到一个优秀的导师团队的支持， 临床医生和社会科学家研究人员在加州大学旧金山分校，世界一流的研究和培训机构，具有强大的 致力于多学科研究和临床实践，重点是痴呆症，衰老和痴呆症。博士 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）生物技术的科学 痴呆症;（4）独立所需的专业发展技能。 使用这些技能，拟议的研究评估社会和情感的经验和空间 老年痴呆症（AD）患者的护理人员在家庭和社区中的流动。超过1500万 在美国，家庭成员或朋友为AD或其他痴呆症患者提供护理。 经历照顾者的负担，并处于社会孤立和孤独的高风险中，所有这些都可能导致 对健康和福祉的负面影响。然而，只有四分之一的护理人员获得支持资源。我们 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。 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）绘制和分析与有精神分裂症的人同住的家庭照顾者的客观空间活动， （2）检查和表征家庭照顾者的主观社交网络和情感网络 （3）创建和分析客观空间数据的综合视觉表示， 主观的社会经验，以确定潜在的干预措施。这项研究将为以下方面提供指导： 设计整合定性和空间分析的干预措施，以改善护理人员的福祉。

项目成果

A mindfulness-based intervention adapted to dementia caregivers: A study protocol for a randomized clinical control trial.

• DOI: 10.3389/fpsyg.2022.1062452
• 发表时间: 2022
• 期刊: FRONTIERS IN PSYCHOLOGY
• 影响因子: 3.8
• 作者: Antoniou, Rea;Toli, Despoina Georgakopoulou;Lerner, Hannah;Callahan, Patrick;Coble, Roger;Ortiz, Bailey;Sideman, Alissa Bernstein;Shdo, Suzanne M;Levenson, Robert W;Ferreira, Nuno;Moskowitz, Judith T;Rankin, Katherine P
• 通讯作者: Rankin, Katherine P

The Role of Spirituality in Conceptualizations of Health Maintenance and Healthy Aging Among Latin American Immigrants.

灵性在拉丁美洲移民中健康维持和健康衰老的概念化中的作用。

• DOI: 10.1016/j.jagp.2021.04.017
• 发表时间: 2021-11
• 期刊: The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry
• 作者: Weiner-Light S;Rankin KP;Lanata S;Possin KL;Dohan D;Bernstein Sideman A
• 通讯作者: Bernstein Sideman A

"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.

• DOI: 10.3233/jad-220536
• 发表时间: 2022
• 期刊: JOURNAL OF ALZHEIMERS DISEASE
• 影响因子: 4
• 作者: Harrison, Krista L.;Garrett, Sarah B.;Halim, Madina;Sideman, Alissa Bernstein;Allison, Theresa A.;Dohan, Daniel;Naasan, Georges;Miller, Bruce L.;Smith, Alexander K.;Ritchie, Christine S.
• 通讯作者: Ritchie, Christine S.

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

• DOI: 10.1177/08919887221135552
• 发表时间: 2023-07
• 期刊: Journal of geriatric psychiatry and neurology
• 影响因子: 2.6

Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives.

• DOI: 10.1002/trc2.12144
• 发表时间: 2021
• 期刊: Alzheimer's & dementia (New York, N. Y.)
• 作者: Bernstein Sideman A;Harrison KL;Garrett SB;Naasan G;Dementia Palliative Care Writing Group;Ritchie CS
• 通讯作者: Ritchie CS