Persons with Dementia and their Extended Family Caregivers: Service Use, Barriers and Needs

项目摘要/摘要 尽管当代家庭的结构发生了变化，但痴呆症护理文献提供的信息有限 关于照顾情况和情况的信息和见解，而不是涉及配偶和 成年子女/儿媳照顾者。人们对妇女的照料责任和做法知之甚少。 越来越多的大家庭照顾者(即孙子孙女、兄弟姐妹、侄女/侄子、继亲) 承担主要照顾者的角色。这项研究的目的是增加对如何 大家庭照顾者管理对患有阿尔茨海默病或其他痴呆(PWD)的老年人的护理 以及他们的护理做法与残障结局之间的关系。具体地说，这个项目的目的是学习 关于大家庭照顾者用来管理照看需求的策略，他们面临的障碍 何时寻求和使用非正式支持以及以家庭和社区为基础的服务(HCBS)，以及如何照顾 受助人的需要、照顾者的非照护责任和六氯联苯的使用影响残障人士的福祉 和照顾者。这项研究以生命过程视角为指导，以健康行为模型为基础 确定将服务利用率和幸福感与环境联系起来的诱因、需求和支持因素 残障人士和照顾者的结局。研究采用了混合方法设计，以提供深入的 了解大家庭照料者面临的问题，以及他们利用非正式帮助和母婴传播系统 协助照顾残疾人士。包括开放式问题和标准项目的电话面试 和结构化的措施，然后进行为期8天的半结构化日记访谈，重点是日常经历 将向240名大家庭成员实施HCBS，他们是儿童的主要照顾者 居住在社区(即非住宅环境)的残疾人士，外加120名核心家庭照顾者(即成年人 子女和配偶)进行比较。描述性、多变量和定性数据分析 将使用技术来解决研究问题和研究假设。研究结果将扩大 关于大家庭照顾者以及他们对非正式帮助和HCBS的使用的科学知识 它从专注于核心家庭照顾者的文献中涌现出来，并提供了更多 详细阐述了照顾的概念，承认了当今家庭生活中发生的变化。 了解家庭情况以及大家庭的具体责任和照顾做法 照顾者，他们在使用社区卫生服务时面临的挑战和障碍，以及由此对福祉的影响 残疾人士及残疾人士本身的福祉，将为母婴健康中心及 旨在支持家庭照顾者的计划。

PROJECT SUMMARY/ABSTRACT Despite changes in the structure of contemporary families, the dementia caregiving literature provides limited information and insights about care situations and circumstances beyond those which involve spouses and adult children/children-in-law caregivers. Little is known about the caregiving responsibilities and practices of a growing number of extended family caregivers (i.e., grandchildren, siblings, nieces/nephews, step-kin) who assume the role of primary caregiver. The purpose of this research is to increase understanding of how extended family caregivers manage care for older persons with Alzheimer's disease or other dementias (PwD) and the relationship between their care practices and PwD outcomes. Specifically, this project aims to learn about the strategies extended family caregivers use to manage the demands of caregiving, barriers they face when seeking and using informal support and home and community-based services (HCBS), and how care recipients' needs, caregivers' non-care responsibilities, and HCBS use influence the well-being of the PwD and caregivers. The research is guided by a life course perspective and is grounded in a health behavior model that identifies predisposing, need, and enabling factors to contextualize service utilization and well-being outcomes for PwD and the caregiver. The research employs a mixed-methods design to provide an in-depth understanding of the issues faced by extended family caregivers and their use of informal help and HCBS to assist with the care of the PwD. A telephone interview that includes open-ended questions and standard items and structured measures followed by a semi-structured 8-day diary interview focused on the daily experiences with HCBS will be administered to 240 extended family members who serve as the primary caregivers of a PwD living in the community (i.e., non-residential settings), plus 120 nuclear family caregivers (i.e., adult children and spouses) for comparison purposes. Descriptive, multivariate, and qualitative data analysis techniques will be used to address the research questions and study hypotheses. Study findings will extend scientific knowledge about extended family caregivers and their use of informal help and HCBS beyond that which has emerged from the literature focused on nuclear family caregivers and provide a much more elaborated conception of caregiving that acknowledges the transformations occurring in family life today. Understanding family circumstances and the specific responsibilities and care practices of extended family caregivers, challenges and barriers they face when accessing HCBS, and the resultant effect on the well-being of the PwD as well as their own well-being will provide new and highly relevant information for HCBS and programs designed to support family caregivers.