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: 10594292
• 负责人: Candace Lynn Kemp
• 金额: $ 12.88万
• 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 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10594292
• 关键词: Accounting; Address; Age; Area; Assisted Living Facilities; Bioethics; COVID-19; COVID-19 pandemic; Caring; Clinical Ethics; Code; Cognitive; Complex; Conflict (Psychology); Data; Data Collection; Decision Making; Dementia; Development; Distress; Educational Materials; Elderly; Equilibrium; Ethical Issues; Ethicists; Ethics; Family; Frequencies; Friends; Goals; Home; Impaired cognition; Incidence; Individual; Knowledge; Learning; Life; Location; Long-Term Care; Modeling; Morals; Morbidity - disease rate; Nature; Pattern; Personal Satisfaction; Persons; Policies; Policy Developments; Public Health; Quality of Care; Quality of life; Recommendation; Research; Research Personnel; Resolution; Resource Development; Resources; Risk; Safety; Security; Shapes; Signal Transduction; Stress; Time; Training; Typology; Uncertainty; United States Department of Veterans Affairs; Work; base; caregiving; community living; design; education resources; evidence base; experience; improved; lens; pandemic disease; parent project; preference; programs; residential care facility; routine care; social stigma; sound

PROJECT SUMMARY/ABSTRACT Assisted living (AL), one of the fastest growing residential long-term care options in the US, is home to nearly one million older adults, many of whom are advanced in age, physically and cognitively vulnerable, and have multiple morbidities, including dementia. On a daily basis, residents and those who care for them, including staff, residents’ family and friends, and external workers encounter uncertainty and conflict about values as do researchers in these settings. Prior to the pandemic, which is exacerbating uncertainty, AL communities were rife with ethical issues with implications for resident quality of life and care and care partners well-being. Yet, with few exceptions, mainly our recent work, research has overlooked ethical issues in AL and critical knowledge gaps remain. Our research suggests that “identifying ethical issues and the underlying principles” is key to promoting “ethically sound practices.” An in-depth understanding of ethics in AL is needed for effective policy and resource development. In this project, we build on existing work, including a typology we developed using pre-pandemic data. Our aims are: 1) To apply the typology of “Ethical Issues in Assisted Living” to data collected during the pandemic to further characterize the nature, types, and frequency of previously-identified types of ethical issues, and to identify newly emerging issues, especially those relating to the COVID-19 pandemic; and 2) To develop educational materials and training for researchers in order to build capacity for the identification and understanding of ethical issues working in assisted living and with persons living with dementia and their care partners. We address our aims using data from the parent project, “Meaningful Engagement and Quality of Life among AL Residents with Dementia.” This five-year study seeks to learn from residents and their care partners and involves studying daily life and care routines. Supplement findings will elucidate the ethical context in this complex care setting and provide a base of evidence to inform policy and practice recommendations aimed at improving assisted living resident quality of life and quality of care and reducing moral stress and distress among care partners. Findings also will build capacity and guidance for researchers in the AL space with implications more broadly for research in long-term care and caregiving studies, as well as research involving persons living with dementia. Accomplishing our aims will ultimately enhance the overall impact of the parent project and advance bioethics research.

项目摘要/摘要 辅助生活（AL）是美国成长最快的居民长期护理选择之一，几乎是 一百万老年人，其中许多人在身体和认知上脆弱，并且有 多种病态，包括痴呆。每天，居民和关心他们的人，包括 员工，居民的家人和朋友，外部工人遇到不确定性和价值冲突 在这些环境中的研究人员。在大流行（加剧不确定性）之前，社区是 充满道德问题，对居民的生活质量，护理和护理伙伴的福祉产生影响。然而， 除少数例外，主要是我们最近的工作，研究忽略了AL和批判性的道德问题 知识差距仍然存在。我们的研究表明，“确定道德问题和基本原则”是 促进“道德上健全的实践”的关键。需要对AL中的道德的深入了解才能有效 政策和资源制定。在这个项目中，我们以现有工作为基础，包括我们开发的类型学 使用流行前数据。我们的目标是：1）将“辅助生活中的道德问题”的类型应用于数据 在大流行期间收集，以进一步表征先前识别的性质，类型和频率 道德问题的类型，并确定新出现的问题，尤其是与Covid-19的问题 大流行; 2）为研究人员开发教育材料和培训，以建立能力 对辅助生活和与之相处的人的道德问题的认同和理解 痴呆症及其护理伙伴。我们使用父级项目的数据来解决我们的目标，“有意义 痴呆症患者居民的敬业度和生活质量。”这项五年的研究旨在向 居民及其护理伙伴，涉及研究日常生活和护理程序。补充发现将 在这个复杂的护理环境中阐明道德背景，并提供证据基础，以告知政策和 实践建议，旨在改善辅助生活居民的生活质量和护理质量和 减轻护理伙伴的道德压力和困扰。调查结果还将为 AL空间中的研究人员对长期护理和护理的研究更广泛地影响 研究以及涉及痴呆症患者的研究。实现我们的目标最终将 增强母公司项目的整体影响并提高生物伦理学研究。

项目成果

A Collaborative Approach to Improving Care Outcomes for Residents in Assisted Living.

• DOI: 10.1177/23337214231222981
• 发表时间: 2024-01
• 期刊: GERONTOLOGY AND GERIATRIC MEDICINE
• 影响因子: 2.7
• 作者: Morgan, Jennifer Craft;Jason, Kendra J.;Kemp, Candace L.;Bhattacharyya, Kallol Kumar
• 通讯作者: Bhattacharyya, Kallol Kumar

"I'm not terribly lonely": Advancing the understanding of intimacy among older adults.

• DOI: 10.1016/j.jaging.2022.101005
• 发表时间: 2022-06
• 期刊: JOURNAL OF AGING STUDIES
• 影响因子: 2.3
• 作者: Fitzroy, Andrea F.;Kemp, Candace L.;Burgess, Elisabeth O.
• 通讯作者: Burgess, Elisabeth O.

The Ethics in Long-Term Care Model: Everyday Ethics and the Unseen Moral Landscape of Assisted Living.

• DOI: 10.1177/07334648211049806
• 发表时间: 2022-04
• 期刊: Journal of applied gerontology : the official journal of the Southern Gerontological Society
• 作者: Kemp CL;Lesandrini J;Craft Morgan J;Burgess EO
• 通讯作者: Burgess EO

Meaningful Engagement Among Assisted Living Residents With Dementia: Successful Approaches.

• DOI: 10.1177/0733464821996866
• 发表时间: 2021-12
• 期刊: Journal of applied gerontology : the official journal of the Southern Gerontological Society
• 作者: Kemp CL;Bender AA;Ciofi J;Craft Morgan J;Burgess EO;Duong S;Epps FR;Hill AM;Manley PR;Sease J;Perkins MM
• 通讯作者: Perkins MM