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.

项目概要 拟议研究项目的目的是： 1) 描述西班牙裔人表达的偏好 南佛罗里达州的护理人员寻求帮助他们更好地照顾患有阿尔茨海默病的老年人的服务 疾病及相关痴呆症（ADRD）； 2) 检查现有支持与现有支持的文化一致性 通过比较访谈中出现的主题，了解西班牙裔 ADRD 护理人员的期望 提供者和护理人员。老年西班牙裔是该国增长最快的人口群体之一， 到 2050 年，估计占 65 岁及以上人口的 20%。西班牙裔的患病率似乎更高 与美国白人和非裔美国人相比，阿尔茨海默病和其他痴呆症，尤其是在 年龄较大的群体。佛罗里达州迈阿密戴德县近 70% 的老年人口是西班牙裔， 人口不断增长，尤其是 80 岁以上年龄组。由于这些老年西班牙裔人口 阿尔茨海默病和相关痴呆症 (ADRD) 的发病率不断增加，他们的护理需求也随之增加。寿命更长并且 患有阿尔茨海默氏症的身体更健康将增加对家庭护理人员以及家庭和社区的需求 - 为他们提供支持的基础服务。与护理有关的有害影响包括 情绪负担、经济和社会影响、抑郁风险较高、精神药物的使用、 高血压、心血管疾病、医疗保健服务利用率的增加和死亡率。我们知道在 总体而言，西班牙裔人在活动中提供更集中的护理、更多的时间和更多的帮助 日常生活。然而，他们似乎也以不同的方式与护理压力相关，并且没有充分利用 服务，例如支持小组。地区老龄化机构的当地利用率数据显示利用率不足 目前提供的培训和支持服务。尽管当地劳动力具有种族一致性，但 西班牙裔护理人员所持有的价值观可能仍然与服务提供者不同。这个区别 可能会影响服务的交付和接收方式，并导致服务受到严重限制 目前可用。如果我们预计越来越多的西班牙裔老年人得到家人的照顾，那么 需要更加密切地关注当前服务的潜在局限性，以便提供能够满足以下要求的服务： 将适当支持西班牙裔护理人员。拟议的研究旨在通过以下方式改变当前的做法 深入了解西班牙裔 ADRD 护理人员对 ADRD 认知的潜在差异 需求和服务提供者通过民族志研究和叙述了解这些需求 对通过深入访谈和参与观察收集的数据进行分析。这项研究将进行 与当地老龄问题机构合作，目标是向直接服务机构提供信息 照顾者。最终目标是设计和评估适合文化的西班牙裔护理人员支持 未来的服务。