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

项目摘要 这项拟议的研究项目的目的是：1)描述西班牙裔美国人表达的偏好 南佛罗里达州的照顾者提供服务，帮助他们更好地照顾患有阿尔茨海默氏症的老年人 疾病和相关痴呆症(ADRD)；以及2)检查现有支持与 通过比较与西班牙裔ADRD照顾者访谈的主题来了解他们的期望 提供者和照顾者。老年拉美裔美国人是美国增长最快的人口群体之一， 到2050年，估计占所有65岁及以上人口的20%。拉美裔似乎有更高的发病率 阿尔茨海默氏症和其他痴呆症与美国白人和非裔美国人相比，特别是在 年龄较大的群体。在佛罗里达州迈阿密-戴德县，近70%的老年人口是西班牙裔，而这 人口正在增长，特别是在80岁以上的年龄段。随着这群年长的拉美裔美国人 阿尔茨海默病和相关痴呆症(ADRD)越来越多，他们的护理需求也会增加。寿命更长，寿命更长 阿尔茨海默氏症患者身体更健康将增加对家庭照顾者以及家庭和社区的需求- 基于支持它们的服务。与照料有关的有害影响包括 情感负担、经济和社会影响、患抑郁症的风险较高、使用精神药物、 高血压、心血管疾病、卫生保健服务利用率的增加和死亡率。我们知道在 一般认为，拉美裔美国人提供更密集的照顾，更多的时间，和更多的援助活动 日常生活。然而，它们似乎也与照顾的压力有不同的联系，而且利用不足。 服务，如支持小组。地区机构关于老龄化的当地利用率数据显示利用率不足 目前提供的培训和支助服务。尽管当地的劳动力种族一致，但在那里 西班牙裔照顾者的价值观可能仍然与服务提供者的价值观不同。这种差异 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。如果我们预计会有更多的西班牙裔老年人由家人照顾，那么 需要更密切地关注当前服务的潜在局限性，以便提供 将适当地支持西班牙裔照顾者。拟议的研究试图通过以下方式改变目前的做法 深入了解西班牙裔ADRD照顾者对 需求和服务提供商通过人种学研究和叙事了解这些需求 通过深度访谈和参与者观察收集的数据进行分析。这项研究将继续进行 与当地老龄问题机构合作，目标是向 照顾者。最终目标是设计和评估在文化上适当的西班牙裔照顾者支持 未来的服务。

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.