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.

护理伙伴（即，非正式护理人员）与阿尔茨海默病和阿尔茨海默病患者一起生活 相关性痴呆（AD/ADRD）经常经历相当大的压力，这可能对患者的健康产生负面影响。 照顾伴侣和痴呆症患者的健康。大多数痴呆症治疗研究 几乎完全侧重于“初级”保健伙伴的作用，通常是配偶或成年人 患有AD/ADRD的人的孩子。然而，对于大多数AD/ADRD患者，尤其是那些 由于来自不同背景的个人，通常通过多个人的网络提供咨询 而不仅仅局限于传统的家庭护理伙伴。越来越多的“非 传统的”照顾伴侣，包括继亲属和非婚姻浪漫伴侣“，混合家庭”（例如，步骤- 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 人，如朋友，合作伙伴，和其他人与个人分享亲属关系，但 没有生物或法律的联系），但对他们作为护理伙伴的经历几乎一无所知 或者如何描述它们。为了解决这一疏忽，我们建议开发一个新的测量系统 可以捕捉和描述护理伙伴体验的最重要方面， 个体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），只需使用最少数量的项目即可确定一个人的功能水平，而不会丢失 长期计量的精确性，以及确定、调整和验证现有计量。 具体而言，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），使用非传统护理伙伴的半结构化访谈数据， （n=20-30人）。然后，这些新开发的项目将在大量不同的护理伙伴样本中进行测试 AD/ADRD患者（N=300名AD/ADRD患者的护理伴侣;至少n=100名非AD/ADRD患者） 传统护理伙伴和至少n=100个种族/少数民族护理伙伴）。经过测试，A 国家的最先进的方法，采用经典和当代的测试建设方法， 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。 这些新的措施将被用来描述这些非传统的护理伙伴，并比较他们的 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 这是一个很好的方法，可以帮助他们的伙伴，最终改善他们的生活和他们所提供护理的人的生活。