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.

项目总结/摘要 辅助生活（AL）是美国增长最快的长期护理选择之一， 100万老年人，其中许多人年事已高，身体和认知能力脆弱， 多种疾病包括痴呆症每天，居民和照顾他们的人，包括 工作人员、居民的家人和朋友以及外部工作人员在价值观方面遇到不确定性和冲突， 研究人员在这些设置。在加剧不确定性的大流行之前，AL社区 充斥着道德问题，影响居民的生活质量和护理及护理伙伴的福祉。然而， 除了少数例外，主要是我们最近的工作，研究忽视了AL中的伦理问题， 知识差距依然存在。我们的研究表明，“确定道德问题和基本原则”是 促进“道德良好做法”的关键。为了有效地实施这些措施，需要深入了解AL中的道德规范 政策和资源开发。在这个项目中，我们建立在现有的工作，包括我们开发的类型学 使用大流行前的数据。我们的目标是：1）将“辅助生活中的伦理问题”的类型学应用于数据 在大流行期间收集，以进一步表征先前发现的 道德问题的类型，并确定新出现的问题，特别是与COVID-19有关的问题 2）为研究人员编制教育材料和培训，以建立以下方面的能力： 确定和理解在辅助生活和与患有艾滋病的人一起工作的道德问题 老年痴呆症及其护理伙伴我们使用来自母项目“有意义”的数据来实现我们的目标。 参与度和生活质量的AL居民与痴呆症。这项为期五年的研究旨在学习 居民和他们的护理伙伴，并涉及研究日常生活和护理程序。补充调查结果将 阐明在这种复杂的护理环境中的伦理背景，并提供证据基础，为政策提供信息， 旨在改善生活援助居民生活质量和护理质量的实践建议， 减少护理伙伴的道德压力和痛苦。调查结果还将建立能力和指导， AL领域的研究人员对长期护理和康复研究有更广泛的影响 研究，以及涉及痴呆症患者的研究。实现我们的目标最终将 加强母项目的总体影响，推进生物伦理学研究。

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.

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

有意义地参与辅助痴呆症的辅助居民：成功的方法。

• 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

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