Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia

患有痴呆症的辅助生活居民的有意义的参与和生活质量

• 批准号: 9788218
• 负责人: Candace Lynn Kemp
• 金额: $ 65.66万
• 依托单位: GEORGIA STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-30 至 2023-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9788218
• 关键词: Activities of Daily Living; Address; Advocate; Age; Alzheimer' s Disease; Anxiety; Area; Assisted Living Facilities; Behavioral; Caring; Communities; Data; Data Analyses; Data Collection; Dementia; Dementia caregivers; Dimensions; Disease; Education; Environment; Ethnic Origin; Fees; Gender; Goals; Health; Healthcare; Individual; Influentials; Interview; Knowledge; Lead; Learning; Location; Mediation; Mental Depression; Mental Health; Methodology; Methods; Modeling; Nursing Homes; Participant; Perception; Personal Satisfaction; Persons; Physical Function; Physical environment; Policies; Policy Maker; Public Health; Public Health Practice; Quality of Care; Quality of life; Race; Recommendation; Religion; Research; Research Personnel; Resources; Site; Social Environment; Socioeconomic Status; Stimulus; Time; Training; Training and Education; Translating; Visit; Work; cognitive function; community living; cost; dementia care; ethnographic method; expectation; experience; informal care; informal caregiver; innovation; insight; policy implication; prevent; programs; residence; social; theories

PROJECT SUMMARY/ABSTRACT Meaningful engagement is a critical dimension of quality of care and quality of life for persons living with dementia. Defined broadly as participation in individual and group activity, engagement has implications for well-being, mental health, and cognitive and physical function and shows promise as a non-pharmacological strategy for addressing anxiety, depression, and behavioral expressions. For residents in assisted living (AL), which is an increasingly popular care setting for persons with dementia, engagement also can prevent or delay relocation to costly and less-preferred nursing home settings, but represents a significant challenge. Although our work shows that most AL residents are embedded in care convoys (i.e. networks) comprised of formal and informal care partners who support their daily activities, opportunities for meaningful engagement are neither universally nor consistently available, especially for those with dementia. Evidence points to the importance of meaningful engagement for persons living with dementia, but also to potential barriers. Despite the significant public health, practice, and policy implications, unknown is what constitutes meaningful engagement and how to best promote it as across dementia type and level of functional ability. The overall goal of this five-year study is to identify best care practices aimed at recognizing, creating, and maintaining optimal meaningful engagement opportunities for persons with dementia that enhance their quality of life. Our specific aims are: 1) To learn what constitutes meaningful engagement in the lives of AL residents with dementia, including how it is perceived and negotiated by care partners; 2) To understand the intersecting factors that promote and constrain meaningful engagement opportunities and experiences in the lives of persons with dementia in AL; and 3) To determine strategies that promote meaningful engagement opportunities and experiences for persons living with dementia. This study will use ethnographic methods, including participant observation, informal and formal interviewing, and record review in 12 AL settings that vary by key individual-, residence-, and local community-level factors, collecting data in three 1-year periods involving 4 sites each. Seventy-five residents with different types of dementia and of varying levels of functional ability and diverse in gender, age, race and ethnicity, and socioeconomic position, will be purposively selected and studied along with the informal and formal care partners. Grounded Theory Method will guide data collection and analysis, which will provide significant insight into residents’ meaningful engagement opportunities and experiences, including connections to quality of life. The study will support the National Alzheimer’s Plan and its call to optimize care quality and support persons living with dementia and their care partners by advancing knowledge of engagement, including how to assess its quality in the dementia context, and identifying best care practices that lead to optimal meaningful engagement among persons with dementia.

项目摘要/摘要 有意义的参与是护理质量和生活质量的一个关键方面 痴呆症。参与度的广义定义是参与个人和团体活动，其含义是 幸福感、心理健康、认知和身体功能，并显示出作为非药物治疗的希望 应对焦虑、抑郁和行为表达的策略。对于辅助生活(AL)的居民， 对于痴呆症患者来说，这是一种越来越受欢迎的护理环境，参与也可以防止或推迟 搬迁到昂贵和不太受欢迎的疗养院环境，但这是一个巨大的挑战。虽然 我们的工作表明，大多数AL居民都嵌入了由正式和 支持他们日常活动的非正式护理伙伴，有意义的接触机会既不是 普遍也不一致，尤其是对痴呆症患者。有证据表明， 对痴呆症患者有意义的参与，但也要克服潜在的障碍。尽管重要的是 公共卫生、实践和政策影响，未知是什么构成了有意义的参与以及如何 以最大限度地促进其跨越痴呆症类型和水平的功能能力。这项为期五年的研究的总体目标 是确定旨在识别、创建和保持最佳有意义的最佳护理实践 为痴呆症患者提供参与机会，提高他们的生活质量。我们的具体目标是：1) 了解什么构成对AL痴呆症患者的生活有意义的参与，包括它是如何 由关怀合作伙伴感知和协商；2)了解促进和 限制AL痴呆症患者生活中有意义的参与机会和经历； 以及3)确定促进有意义的参与机会和体验的战略 患有痴呆症的人。这项研究将使用人种学方法，包括参与者观察， 非正式和正式面试，并在12个AL环境中进行记录审查，这些环境因关键个人、住所、 和当地社区层面的因素，在三个一年期间收集数据，每个涉及4个地点。七十五 居民患有不同类型的痴呆症，功能能力水平各不相同，性别、年龄、 将有目的地选择和研究种族和族裔以及社会经济地位 非正式和正式的护理伙伴。扎根理论方法将指导数据收集和分析，这将 提供对居民有意义的参与机会和体验的重要洞察力，包括 与生活质量的联系。这项研究将支持国家阿尔茨海默氏症计划及其优化护理的呼吁 通过提高对痴呆症患者及其护理伙伴的认识，为他们提供质量和支持 参与度，包括如何在痴呆症背景下评估其质量，以及确定最佳护理做法 这导致痴呆症患者最佳的有意义的参与。