Oregon Alzheimer's Disease Research Center, School of Medicine, Oregon Health & Science University, Portland, OR, United States.
Global Brain Health Institute, University of California, San Francisco, CA, United States.
JMIR Form Res. 2024 Sep 25;8:e56878. doi: 10.2196/56878.
Caring for a family member living with dementia is costly. A major contributor to care demands, and therefore to the costs, are the behavioral symptoms of dementia. Here, we examine the feasibility of ascertaining costs related to caregiving from weekly web-based surveys collected during a telehealth-based behavioral intervention study-Support via Technology: Living and Learning with Advancing Alzheimer Disease.
This study aims to determine the feasibility and acceptability of using a web-based weekly survey to capture real-time data on out-of-pocket caregiving expenses and time commitments associated with dementia care. To examine relationships between behavioral symptoms, care partner reactivity, burden, and out-of-pocket dementia care costs.
Feasibility was measured by accrual, retention, and data completion by participating care partners. Behavioral symptoms, care partner reactivity, and burden were collected before and after the intervention from 13 care partners. Weekly web-based surveys queried Support via Technology: Living and Learning with Advancing Alzheimer Disease care partners about their out-of-pocket costs associated with care-related activities. The surveys included questions on out-of-pocket costs care partners incurred from hospitalizations and emergency department use, primary care provider visits, use of paid in-home care or respite services, use of prescription medications, and use of over-the-counter medications. The surveys also queried the amount of time care partners devoted to these specific care-related activities.
Out-of-pocket costs of dementia care were collected via a web-based weekly survey for up to 18 months. In-home assistance was the most frequently reported type of out-of-pocket care expense and the costliest. care partners who paid for in-home assistance or respite reported more behavioral and psychological symptoms of dementia behaviors, higher reactivity, and higher burden than those who did not.
This novel web-based weekly survey-based approach offers lessons for designing and implementing future cost-focused studies and care partner-supportive telehealth-based interventions for Alzheimer disease and related dementias (ADRD). The results correspond with the existing understanding of ADRD in that high family-related out-of-pocket costs are a typical part of the caregiving experience, and those costs likely increase with dementia severity. The results may also offer potential insights to health systems and policy makers as they seek to implement telehealth-based and related interventions that seek to better support people living with ADRD and their family care partners.
ClinicalTrials.gov NCT04335110; https://clinicaltrials.gov/ct2/show/NCT04335110.
照顾家中患有痴呆症的亲人费用高昂。痴呆症患者的行为症状是导致护理需求的主要因素，也是导致费用增加的主要因素。在此，我们通过基于远程医疗的行为干预研究-通过技术支持：与痴呆症共同生活和学习收集的每周网络调查，来评估确定与护理相关的费用的可行性。
本研究旨在确定使用基于网络的每周调查来实时收集与痴呆症护理相关的自付护理费用和时间投入的可行性和可接受性。研究行为症状、护理伙伴反应、负担与自付痴呆症护理费用之间的关系。
通过参与的护理伙伴的积累、保留和数据完成来衡量可行性。13 名护理伙伴在干预前后收集了行为症状、护理伙伴反应和负担。每周通过网络调查向通过技术支持：与痴呆症共同生活和学习的 CarePartners 询问与护理相关活动相关的自付费用。调查询问了护理伙伴因住院和急诊使用、初级保健提供者就诊、使用付费家庭护理或临时服务、使用处方药物和使用非处方药物而产生的自付费用。调查还询问了护理伙伴投入这些特定护理相关活动的时间。
通过基于网络的每周调查收集了长达 18 个月的痴呆症护理自付费用。家庭援助是最常报告的自付护理费用类型，也是最昂贵的。与没有支付家庭援助或临时服务费用的护理伙伴相比，支付家庭援助或临时服务费用的护理伙伴报告了更多的痴呆症行为和心理症状、更高的反应性和更高的负担。
这种新颖的基于网络的每周调查方法为设计和实施未来以成本为重点的研究以及基于远程医疗的阿尔茨海默病和相关痴呆症（ADRD）护理伙伴支持性干预措施提供了经验。研究结果与现有的 ADRD 认识相一致，即家庭相关的高额自付费用是护理体验的典型部分，并且这些费用可能随着痴呆症的严重程度而增加。研究结果还可能为卫生系统和政策制定者提供一些潜在的见解，因为他们试图实施基于远程医疗的干预措施，以更好地支持患有 ADRD 的人和他们的家庭护理伙伴。
ClinicalTrials.gov NCT04335110；https://clinicaltrials.gov/ct2/show/NCT04335110。
