Capturing the complexities of informal caregiver networks: New measures to improve outcomes for informal care partners of people living with Alzheimer’s disease and related dementias (AD/ADRD)

了解非正式护理人员网络的复杂性：改善阿尔茨海默病和相关痴呆症 (AD/ADRD) 患者的非正式护理伙伴的结果的新措施

• 批准号: 10728350
• 负责人: Noelle E. Carlozzi
• 金额: $ 198.7万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10728350
• 关键词: Address; Adult Children; Alzheimer' s Disease; Alzheimer' s disease related dementia; Area; Biological; Calibration; Caregivers; Caring; Case Report Form; Child; Clinical; Clinical Trials; Communities; Computers; Data; Data Analyses; Dementia; Development; Dimensions; Educational Status; Elements; Emotional; Family; Family member; Friends; Funding Opportunities; Future; Goals; Health; Income; Individual; Interview; Legal; Literature; Measurement; Measures; Mediating; Methods; National Institute on Aging; Outcome; Participant; Patient Outcomes Assessments; Patient Self-Report; Persons; Play; Population Heterogeneity; Prevalence; Primary Care; Psyche structure; Research; Research Personnel; Role; Sampling; Services; Siblings; Social Well-Being; Spouses; Stress; Structure; Survey Methodology; Surveys; System; Targeted Research; Technology; Testing; Trust; Validation; Vulnerable Populations; Work; caregiving; caregiving research; community setting; computerized; dementia caregiving; design; ethnic minority; experience; family structure; field study; health related quality of life; improved; improved outcome; informal care; informal caregiver; informal caregiving; method development; programs; racial minority; response; social; theories

Care partners (i.e., informal caregivers) of people living with with Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) often undergo considerable stress which can have a negative impact of the health of both the care partner and the person living with dementia. Most dementia caregiving research focuses almost entirely on the role of a “primary” care partner, which is most commonly the spouse or adult child of the person living with AD/ADRD. Yet, for most people living with AD/ADRD, especially for those individuals from diverse backgrounds, caregiving is typically provided through a network of multiple individuals that extends beyond these more traditional family care partners. There is an increasing number of “non- traditional” care partners, including step-kin and non-marital romantic partners, “blended families” (e.g., step- children), “families of origin” (e.g., surviving siblings), and “families of choice” (e.g., personal communities of people such as friends, partners, and other people with whom individuals share a kin-like relationship, but are not connected by biological or legal ties), yet next to nothing is known about their experience as care partners or how to characterize them. To address this oversight, we propose developing a new measurement system that can capture and characterize the most important aspects of the care partner experience for these individuals. This measurement system will include developing new, sophisticated computer adaptive tests (i.e., smart tests) that can ascertain a person's function level using only a minimal number of items without losing the precision of a longer measure, as well as identifying, adapting and validating existing measures. Specifically, we will identify the critical elements of the care partner role and develop new items (and/or identify and/or adapt existing measures) using data from semi-structured interviews with non-traditional care partners (n=20-30 people). These newly developed items will then be tested in a large, diverse sample of care partners of people living with AD/ADRD (N=300 care partners of people living with AD/ADRD; a minimum of n=100 non- traditional care partners and a minimum of n=100 racial/ethnic minority care partners). After this testing, a state-of-the-art approach employing both classical and contemporary methods of test construction and validation – including item response theory and computerized adaptive testing technology – will be used to develop new computerized adaptive tests that permit brief and precise measurement of these critical concepts. These new measures will be used to both characterize these non-traditional care partners and compare their experience to other types of care partners. This will enable us to better understand and support these care partners, ultimately improving their lives and that of the person for whom they provide care.

阿尔茨海默病患者和阿尔茨海默病患者的护理伙伴（即非正式护理人员） 相关痴呆症（AD/ADRD）经常承受相当大的压力，这可能会对他们的生活产生负面影响。 大多数痴呆症护理研究都涉及护理伙伴和痴呆症患者的健康状况。 几乎完全关注“主要”护理伙伴的角色，最常见的是配偶或成年人 然而，对于大多数患有 AD/ADRD 的人来说，尤其是那些患有 AD/ADRD 的人的孩子。 来自不同背景的个人，护理通常是通过多人网络提供的 超出了这些更传统的家庭护理伙伴的范围。“非-”的数量正在不断增加。 传统的“照顾伙伴”，包括继亲和非婚浪漫伙伴、“混合家庭”（例如，继亲和非婚姻伴侣） 儿童）、“原生家庭”（例如幸存的兄弟姐妹）和“选择的家庭”（例如， 诸如朋友、合作伙伴以及其他与个人有亲属关系但又彼此关系密切的人。 没有生物或法律联系），但对他们作为护理伙伴的经历却几乎一无所知 或者如何描述它们的特征为了解决这种监督问题，我们建议开发一种新的测量系统。 可以捕捉和描述这些人的护理伙伴体验中最重要的方面 该测量系统将包括开发新的、复杂的计算机自适应测试（即， 智能测试）可以仅使用最少数量的项目来确定一个人的功能水平而不会丢失 长期措施的精度，以及识别、调整和验证现有措施。 具体来说，我们将确定护理伙伴角色的关键要素并开发新项目（和/或确定 和/或调整现有措施）使用来自非传统护理合作伙伴的半结构化访谈的数据 （n=20-30 人）。然后，这些新开发的项目将在大量、多样化的护理合作伙伴样本中进行测试。 AD/ADRD 患者的数量（N = 300 名 AD/ADRD 患者的护理伙伴；至少 n = 100 名非 传统护理伙伴和至少 n=100 名少数族裔/族裔护理伙伴)。 采用经典和现代测试构建方法的最先进方法 验证——包括项目反应理论和计算机自适应测试技术——将用于 开发新的计算机化自适应测试，允许对这些关键概念进行简单而精确的测量。 这些新措施将用于描述这些非传统护理伙伴的特征并比较他们的 向其他类型的护理合作伙伴提供经验，这将使我们能够更好地理解和支持这些护理。 合作伙伴，最终改善他们以及他们所照顾的人的生活。