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)

阿尔茨海默病和阿尔茨海默病患者的护理伙伴(即非正式照顾者) 相关痴呆(AD/ADRD)通常承受相当大的压力，这可能会对 护理伙伴和痴呆症患者的健康。痴呆症护理研究最多 重点几乎完全放在“初级”护理伙伴的角色上，通常是配偶或成年人 AD/ADRD患者的子女。然而，对于大多数患有AD/ADRD的人，特别是那些 来自不同背景的个人，照看通常通过多个个人的网络提供 这超出了这些更传统的家庭护理伙伴的范围。有越来越多的“非- 传统的“照顾伴侣”，包括继亲和非婚的浪漫伴侣，“混合家庭”(例如，继亲-- 儿童)、“原籍家庭”(例如，尚存的兄弟姐妹)和“选择家庭”(例如， 例如朋友、伴侣和其他人，与他们有类似亲属的关系，但 没有生物或法律联系)，但几乎对他们作为护理伙伴的经历一无所知 也不知道如何描述它们。为了解决这一疏忽，我们建议开发一种新的测量系统 它可以捕捉和描述以下护理合作伙伴体验的最重要方面 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)，它可以仅使用最少的项目来确定人的功能水平，而不会丢失 较长衡量标准的精确度，以及确定、调整和验证现有衡量标准。 具体地说，我们将确定护理伙伴角色的关键要素，并开发新的项目(和/或确定 和/或调整现有措施)使用来自对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护理伙伴的大样本中进行测试 AD/ADRD患者(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100名种族/少数族裔护理伙伴)。在这次测试之后，一个 采用经典和现代测试构建方法和最先进的方法 验证--包括项目反应理论和计算机化的适应性测试技术--将用于 开发新的计算机化适应性测试，允许对这些关键概念进行简短和精确的测量。 这些新措施将用于描述这些非传统护理合作伙伴的特征，并比较他们的 对其他类型的护理合作伙伴的经验。这将使我们能够更好地理解和支持这些护理 合作伙伴，最终改善他们的生活和他们提供护理的人的生活。

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.