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

基本信息

批准号：
9687377
负责人：
Candace Lynn Kemp
金额：
$ 68.38万
依托单位：
GEORGIA STATE UNIVERSITY
依托单位国家：
美国
项目类别：
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/9687377
关键词：
Activities of Daily Living Address Advocate Age Alzheimer&apos 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

项目摘要

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.

项目概要/摘要有意义的参与是患者护理质量和生活质量的一个关键维度痴呆症的广义定义是参与个人和团体活动，参与对痴呆症有影响。福祉、心理健康、认知和身体功能，并显示出作为非药物疗法的前景针对辅助生活 (AL) 的居民解决焦虑、抑郁和行为表达的策略。对于痴呆症患者来说，这是一个越来越受欢迎的护理环境，参与也可以预防或延迟搬迁到成本高昂且不太受欢迎的疗养院环境，但这也是一个重大挑战。我们的工作表明，大多数 AL 居民都加入了由正式和支持其日常活动的非正式护理伙伴，有意义参与的机会也不是普遍或始终存在的证据表明了这一点的重要性，特别是对于痴呆症患者而言。尽管存在重大障碍，但对痴呆症患者来说有意义的参与也存在。公共卫生、实践和政策影响，未知的是什么构成了有意义的参与以及如何参与最好地促进跨痴呆类型和功能能力水平这项为期五年的研究的总体目标。是确定最佳护理实践，旨在识别、创造和维持最佳意义我们的具体目标是：1) 为痴呆症患者提供参与机会，提高他们的生活质量。了解什么是对患有痴呆症的 AL 居民的生活进行有意义的参与，包括如何参与被护理合作伙伴感知和协商； 2) 了解促进和协商的交叉因素；限制了 AL 痴呆症患者生活中有意义的参与机会和经历； 3) 确定促进有意义的参与机会和体验的策略这项研究将使用人种学方法，包括参与观察，在 12 个 AL 环境中进行非正式和正式访谈以及记录审查，这些环境因关键个人、居住地、和当地社区层面的因素，收集三个 1 年期的数据，每个期涉及 75 个地点。患有不同类型痴呆症、功能水平不同、性别、年龄、种族和族裔以及社会经济地位，将与非正式和正式的护理合作伙伴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见解，包括该研究将支持国家阿尔茨海默病计划及其优化护理的呼吁。通过提高痴呆症患者及其护理伙伴的知识来提高质量并为其提供支持参与，包括如何评估痴呆症背景下的质量，以及确定最佳护理实践这导致痴呆症患者有意义的最佳参与。