Shift Health, Toronto, ON, Canada.
Department of Pathology and Molecular Medicine, McMaster University, Hamilton, ON, Canada.
J Alzheimers Dis. 2019;70(2):323-341. doi: 10.3233/JAD-190426.
While it is generally understood that Alzheimer's disease (AD) and related dementias (ADRD) is one of the costliest diseases to society, there is widespread concern that researchers and policymakers are not comprehensively capturing and describing the full scope and magnitude of the socioeconomic burden of ADRD. This review aimed to 1) catalogue the different types of AD-related socioeconomic costs described in the literature; 2) assess the challenges and gaps of existing approaches to measuring these costs; and 3) analyze and discuss the implications for stakeholders including policymakers, healthcare systems, associations, advocacy groups, clinicians, and researchers looking to improve the ability to generate reliable data that can guide evidence-based decision making. A centrally emergent theme from this review is that it is challenging to gauge the true value of policies, programs, or interventions in the ADRD arena given the long-term, progressive nature of the disease, its insidious socioeconomic impact beyond the patient and the formal healthcare system, and the complexities and current deficiencies (in measures and real-world data) in accurately calculating the full costs to society. There is therefore an urgent need for all stakeholders to establish a common understanding of the challenges in evaluating the full cost of ADRD and define approaches that allow us to measure these costs more accurately, with a view to prioritizing evidence-based solutions to mitigate this looming public health crisis.
虽然人们普遍认为阿尔茨海默病(AD)和相关痴呆症(ADRD)是对社会造成成本最高的疾病之一,但人们普遍担心研究人员和政策制定者没有全面捕捉和描述 ADRD 的社会经济负担的全部范围和规模。本综述旨在:1)列举文献中描述的不同类型的与 AD 相关的社会经济成本;2)评估现有衡量这些成本的方法的挑战和差距;3)分析和讨论对包括政策制定者、医疗保健系统、协会、倡导团体、临床医生和研究人员在内的利益相关者的影响,这些利益相关者希望提高生成可靠数据的能力,这些数据可以为循证决策提供指导。从本次综述中集中出现的一个主题是,鉴于该疾病的长期性、渐进性、超出患者和正规医疗保健系统的隐匿性社会经济影响,以及准确计算社会全部成本的措施和现实数据的复杂性和当前不足,衡量 ADRD 领域中政策、计划或干预措施的真正价值具有挑战性。因此,所有利益相关者都迫切需要就评估 ADRD 全部成本的挑战达成共识,并确定使我们能够更准确地衡量这些成本的方法,以期优先考虑基于证据的解决方案来缓解这一迫在眉睫的公共卫生危机。