Harrison Krista L, Adrion Emily R, Friend Juliana, Garrett Sarah B, Halim Madina, Terranova Michael, Sideman Alissa B, Boyd Nicole D, Naasan Georges, Gilissen Joni, Chen Pei, Aldridge Melissa D, Dohan Daniel, Geschwind Michael D, Smith Alexander K, Ritchie Christine S
Division of Geriatrics, Department of Medicine, University of California San Francisco, San Francisco, CA, USA.
Philip R. Lee Institute for Health Policy Studies, University of California San Francisco, San Francisco, CA, USA.
Gerontologist. 2025 Jul 28. doi: 10.1093/geront/gnaf170.
Care for persons with dementia costs ∼ $500 billion annually in the United States. Few qualitative studies or conceptual frameworks of the financial experiences of people impacted by dementia exist. This study examined how patients and caregivers impacted by different types of dementia and at different points in the disease journey described financial issues within a palliative care context.
We conducted a secondary analysis of data from qualitative studies of palliative care needs in dementia (2018-2020) that systematically asked about financial challenges. Interview participants were recruited from a specialty dementia center. Using a hybrid inductive-abductive approach and thematic analysis, we created a conceptual framework to represent themes among people with varied experiences with dementia types and stages.
Among 52 participants recruited, 27 were former caregivers, 16 were current caregivers, and 9 were persons with dementia; experiences reflected Alzheimer's (n = 18), sporadic Creutzfeldt-Jakob (n = 12), Lewy body (n = 7), and other dementias (n = 15). Financial hardships resulted from mismatches between needs and resources people had (direct financial hardships), how they felt about resources (emotional financial hardships), or what they could do with resources (logistical financial hardships). Mitigators of financial hardship included long-term-care insurance, Medicaid, or wealth, while intensifiers included being middle-income and in the workforce during disease manifestation.
Even in a well-resourced population, the financial toll of dementia can be substantial. The Direct-Emotional-Logistical framework of dementia financial hardship can be used to assess financial impacts in palliative care settings.
在美国，每年用于照顾痴呆症患者的费用约为5000亿美元。关于痴呆症患者经济经历的定性研究和概念框架很少。本研究考察了受不同类型痴呆症影响且处于疾病进程不同阶段的患者和护理人员，如何在姑息治疗背景下描述财务问题。
我们对痴呆症姑息治疗需求的定性研究（2018 - 2020年）数据进行了二次分析，这些研究系统地询问了财务挑战。访谈参与者从一家专业痴呆症中心招募。我们采用归纳 - 演绎混合方法和主题分析，创建了一个概念框架来呈现不同痴呆症类型和阶段经历各异的人群中的主题。
在招募的52名参与者中，27名是 former caregivers（原文有误，推测为“former care receivers”，即 former patients，原患者），16名是现任护理人员，9名是痴呆症患者；经历反映了阿尔茨海默病（n = 18）、散发性克雅氏病（n = 12）、路易体痴呆（n = 7）和其他痴呆症（n = 15）。财务困难源于人们的需求与资源之间的不匹配（直接财务困难）、他们对资源的感受（情感财务困难）或他们对资源的利用方式（后勤财务困难）。财务困难的缓解因素包括长期护理保险、医疗补助或财富，而加剧因素包括在疾病显现时为中等收入且有工作。
即使在资源丰富的人群中，痴呆症的财务负担也可能很大。痴呆症财务困难的直接 - 情感 - 后勤框架可用于评估姑息治疗环境中的财务影响。
