The Experience of Alzheimer's Disease Family Caregivers in a Hispanic Community: Cultural congruence and disparities in utilization of support services

西班牙裔社区中阿尔茨海默病家庭护理人员的经历：支持服务利用方面的文化一致性和差异

• 批准号: 9386998
• 负责人: Iveris Luz Martinez
• 金额: $ 7.47万
• 依托单位: FLORIDA INTERNATIONAL UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-08-01 至 2018-02-10
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9386998
• 关键词: Activities of Daily Living; African American; Age; Aged, 80 and over; Aging; Alzheimer' s Disease; Area; Attention; Behavior; Belief; California; Cardiovascular Diseases; Caregiver support; Caregivers; Caring; Client; Collaborations; Country; County; Custom; Data; Data Analyses; Dementia; Dementia caregivers; Disabled Persons; Economics; Elderly; Emotional; Ethnography; Family; Family Caregiver; Family member; Female; Florida; Future; Goals; Health; Health Services Accessibility; Hispanics; Home environment; Hour; Hypertension; Intensive Care; Interview; Latino; Life Expectancy; Life Style; Mental Depression; Modeling; Older Population; Outcome; Participant; Patients; Perception; Persons; Pharmaceutical Preparations; Population; Process; Provider; Research; Research Project Grants; Resources; Risk; Role; Services; Social Impacts; Support Groups; Training; Training Support; Training and Education; age group; care giving burden; caregiving; caucasian American; community based service; cultural values; design; economic impact; expectation; experience; family structure; health care service utilization; high risk; mortality; preference; primary caregiver; service utilization; social; stressor

Project Summary The purpose of the proposed research project is to: 1) Describe the expressed preferences of Hispanic caregivers in South Florida for services that would help them better care for older adults with Alzheimer’s Disease and related dementias (ADRD); and 2) Examine the cultural congruence of available supports with the expectations of Hispanic ADRD caregivers through the comparison of themes emerging from interviews with providers and caregivers. Older Hispanics are one of the fastest growing demographic groups in the country, representing an estimated 20% of all persons 65 and over by 2050. Hispanics appear to have higher rates of Alzheimer’s and other dementias when compared to White Americans and African Americans, particularly in older age groups. Nearly 70% of the older adult population in Miami-Dade County, Florida is Hispanic, and this population is growing, especially among the 80+ age group. As this population of older Hispanics with Alzheimer’s disease and related dementias (ADRD) grows, so will their caregiving needs. Living longer and physically healthier with Alzheimer’s will increase the need for family caregivers and the home and community- based services that support them. Deleterious effects have been associated with caregiving, including emotional burden, economic and social impact, higher risk for depression, psychotropic medication use, hypertension, cardiovascular diseases, increases of health care services utilization, and mortality. We know in general that Hispanics provide more intensive caregiving, more hours, and more assistance with Activities of Daily Living. However, they also appear to relate to the stresses of caregiving differently, and underutilize services, such as support groups. Local utilization data from the area agency on aging show an underutilization of training and support services as currently provided. Despite an ethnically congruent local workforce, there may still be values held by Hispanic caregivers that differ from those of the service providers. This difference could impact the way services are delivered and received and result in critical limitations to the services currently available. If we are expecting an increase of Hispanic older adults being cared for by family, then closer attention needs to be paid to the potential limitations of current services in order provide services that will appropriately support Hispanic caregivers. The proposed research seeks to shift current practice by providing in-depth understanding of the potential differences between Hispanic ADRD caregivers perception of need and service providers understanding of these needs through ethnographic research and narrative analysis of data collected through in-depth interviews and participant observation. This research will be carried out in collaboration with the local area agency on aging with the goal of informing direct services to caregivers. The ultimate goal is to design and evaluate culturally appropriate Hispanic caregiver support services in the future.

项目摘要 拟议的研究项目的目的是：1）描述西班牙裔的表达偏好 南佛罗里达州的护理人员提供的服务将帮助他们通过阿尔茨海默氏症更好地照顾老年人 疾病和相关痴呆症（ADRD）； 2）检查与该文化的文化一致性 通过比较与采访的主题相比，对西班牙裔ADRD护理人员的期望 提供者和看护人。年长的西班牙裔是该国增长最快的人口群体之一， 到2050年，估计有20％的65岁及以上的人中有20％。 与白人美国人和非裔美国人相比，阿尔茨海默氏症和其他痴呆症，特别是 年龄段的年龄段。佛罗里达州迈阿密戴德县的老年人中近70％是西班牙裔，这 人口正在增长，尤其是在80岁以上的年龄组中。作为老年西班牙裔人的人口 阿尔茨海默氏病和相关痴呆症（ADRD）的增长，他们的护理需求也会增长。寿命更长 阿尔茨海默氏症对身体健康的身体健康将增加对家庭护理人员以及家庭和社区的需求 - 支持他们的基于支持的服务。有害影响与护理有关，包括 情绪伯恩，经济和社会影响，更高的抑郁风险，精神药物使用，使用， 高血压，心血管疾病，医疗服务利用率的增加以及死亡率。我们知道 一般认为西班牙裔提供了更密集的护理，更多的时间和更多的帮助 日常生活。但是，它们似乎也与护理的压力不同，并且不足以利用 服务，例如支持小组。衰老区域机构的本地利用数据显示未充分利用 目前提供的培训和支持服务。尽管有种族一致的当地劳动力，但 西班牙裔护理人员可能仍然是与服务提供商不同的价值观。这个差异 可能会影响服务交付和接收方式，并对服务产生关键的限制 目前可用。如果我们期望有家人照顾西班牙裔老年人的增加，那么 需要更加关注当前服务的潜在局限性，以提供服务 将适当支持西班牙裔护理人员。拟议的研究试图通过 对西班牙裔ADRD护理人员对潜在差异的深入了解 需求和服务提供者通过人种学研究和叙述来理解这些需求 通过深入访谈和参与观察收集的数据分析。这项研究将进行 与当地代理机构合作，以告知直接服务 照顾者。最终目标是设计和评估文化适当的西班牙裔护理人员的支持 将来的服务。