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.

患有阿尔茨海默氏病和阿尔茨海默氏病的人的护理伙伴（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 护理伙伴和患有痴呆症患者的健康。大多数痴呆症护理研究 几乎完全关注“初级”护理伙伴的角色，这通常是配偶或成人 与AD/ADRD一起生活的孩子的孩子。但是，对于大多数与广告/ADRD一起生活的人，尤其是对于那些 来自潜水员背景的个人通常是通过多个人的网络提供的 这超出了这些更传统的家庭护理伙伴。越来越多的“非 - 传统的“护理伙伴，包括继母和非婚姻浪漫伴侣，“混合家庭”（例如 儿童），“原籍家庭”（例如，幸存的兄弟姐妹）和“选择的家庭”（例如，个人社区 诸如朋友，伴侣和其他人都有类似亲属关系的人，但 不通过生物或法律关系联系），但几乎什么都没有知道他们作为护理伙伴的经验 或如何表征它们。为了解决这一监督，我们建议开发一个新的测量系统 可以捕获并描述这些护理伙伴经验的最重要方面 个人。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级别 更长的测量的精度，以及识别，适应和验证现有测量值。 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/或适应现有措施）使用与非传统护理伙伴的半结构化访谈中的数据 （n = 20-30人）。然后，这些新开发的物品将在大型，潜水的护理伙伴样本中进行测试 与AD/ADRD一起生活的人（n = 300个护理伙伴AD/ADRD的人；至少n = 100非 - 传统护理伙伴和最少n = 100种种族/少数民族护理伙伴）。测试后， 采用经典和当代测试构建方法的最先进方法和 验证 - 包括项目响应理论和计算机化自适应测试技术 - 将用于 开发新的计算机自适应测试，可简要介绍这些关键概念。 这些新措施将用于表征这些非传统护理伙伴并比较他们的 经验其他类型的护理伙伴。这将使我们能够更好地理解和支持这些护理 合作伙伴，最终改善了他们提供照顾的人的生活。