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

项目概要/摘要 尽管当代家庭结构发生了变化，但痴呆症预防文献提供的信息有限。 关于照顾情况和情况的信息和见解， 成年子女/姻亲子女照顾者。对这些组织的责任和做法知之甚少， 越来越多的大家庭照顾者（即，孙子、兄弟姐妹、侄女/侄女、继亲）， 承担起主要照顾者的角色。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症的老年人的照顾（PwD） 以及他们的护理实践与PwD结果之间的关系。具体而言，该项目旨在学习 关于大家庭照顾者用来管理养育需求的策略，他们面临的障碍， 在寻求和使用非正式支持以及家庭和社区服务（HCBS）时， 接受者的需求、照顾者的非照顾责任和HCBS的使用影响PwD的幸福感 和照顾者。本研究以生命历程观点为指导，以健康行为模式为基础， 识别诱发因素、需求因素和促成因素，以使服务利用率和福祉 PwD和护理人员的结果。本研究采用混合方法设计， 了解大家庭照顾者所面临的问题，以及他们使用非正式帮助和HCBS， 协助PwD的护理。包括开放式问题和标准项目的电话面试 和结构化的措施，然后是一个半结构化的8天日记采访，重点是日常经验 与HCBS将管理240大家庭成员谁作为主要照顾者的一个 居住在社区的残疾人（即，非居住环境），加上120名核心家庭照顾者（即，成人 子女和配偶）进行比较。描述性、多变量和定性数据分析 技术将用于解决研究问题和研究假设。研究结果将扩大 关于大家庭照顾者及其使用非正式帮助和HCBS的科学知识 这是从关注核心家庭照顾者的文献中出现的， 详细阐述了承认当今家庭生活中发生的变化的生育概念。 了解家庭情况以及大家庭的具体责任和照顾做法 照顾者，他们在获得HCBS时面临的挑战和障碍，以及对福祉的影响 PwD及其自身的福祉将为HCBS提供新的高度相关的信息， 旨在支持家庭照顾者的方案。

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.