Department of Medical Education, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
J Am Geriatr Soc. 2024 May;72(5):1453-1459. doi: 10.1111/jgs.18779. Epub 2024 Jan 27.
Almost 11.3 million family caregivers of people with dementia must navigate the health insurance landscape to meet the complex medical and long-term care needs of their family members. This study explores factors that influence family caregivers' decisions about insurance and how these choices affect the care and support people with dementia receive.
Semi-structured interviews were conducted from June 2022 to January 2023 with 15 family caregivers of people with dementia dual eligible for Medicaid and Medicare and enrolled in home-based primary care in New York City. A set of open-ended questions were asked exploring caregivers' perspectives on navigating insurance plans. Interviews were recorded, transcribed, and analyzed using thematic analysis with both deductive and inductive coding.
Analysis revealed three major themes: (1) challenges of Medicaid enrollment, (2) making do with existing insurance, and (3) mistrust of the insurance system. Initial enrollment in Medicaid compounded the stress of adjusting to caregiving. The enrollment process was impacted by clinical factors, financial factors, and input from providers and social workers; however, caregivers could not identify a centralized system for obtaining insurance information and support. Once Medicaid was in place, participants described advocating on behalf of their family member within the constraints of their current insurance plans (Medicare and Medicaid) and ensuring they had the necessary knowledge to understand their family member's coverage. Participants voiced a need for ongoing vigilance to ensure their family members received needed care and support.
The challenges family caregivers experience when navigating insurance for their family members with dementia contribute to caregiver burden. Robust and centralized professional support for family members both immediately after a family member's dementia diagnosis and as the disease progresses could increase caregivers' capacity to make insurance decisions that best support their family members with dementia.
近 1130 万痴呆症患者的家庭照顾者必须在医疗保险领域中寻找途径，以满足其家庭成员的复杂医疗和长期护理需求。本研究探讨了影响家庭照顾者关于保险的决策的因素，以及这些选择如何影响痴呆症患者所获得的护理和支持。
2022 年 6 月至 2023 年 1 月，在纽约市接受家庭初级保健的、同时符合医疗补助和医疗保险资格的 15 名痴呆症患者的家庭照顾者进行了半结构式访谈。提出了一系列开放式问题，以探讨照顾者在保险计划方面的看法。使用主题分析进行访谈记录、转录和分析，包括演绎和归纳编码。
分析揭示了三个主要主题：（1）医疗补助计划的入籍挑战，（2）利用现有保险，（3）对保险系统的不信任。最初的医疗补助入籍增加了适应护理的压力。入籍过程受到临床因素、财务因素以及提供者和社会工作者的投入的影响；然而，照顾者无法确定获得保险信息和支持的集中系统。一旦医疗补助到位，参与者描述了在他们当前的保险计划（医疗保险和医疗补助）的限制范围内为其家庭成员辩护，并确保他们具备了解其家庭成员覆盖范围的必要知识。参与者表示需要持续警惕，以确保其家庭成员获得所需的护理和支持。
家庭照顾者在为其痴呆症家庭成员选择保险时所面临的挑战导致了照顾者的负担。在家庭成员被诊断出痴呆症后以及随着疾病的进展，为家庭成员提供强大而集中的专业支持，可以增加照顾者做出最能支持其痴呆症家庭成员的保险决策的能力。
