Tip of the Iceberg: Assessing the Global Socioeconomic Costs of Alzheimer's Disease and Related Dementias and Strategic Implications for Stakeholders

Abstract

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.

Keywords: Alzheimer’s disease; caregivers; cost of illness; dementia; disease progression; health care costs; health policy; long-term care; resource allocation.

Fig.1

Tip of the iceberg: Measured societal costs represent only a proportion of the total burden of ADRD. Most studies that have assessed the costs of ADRD have focused on patients with a dementia diagnosis and have generally demonstrated that costs increase with disease severity. However, such studies may not fully capture the total impact of ADRD for three reasons. First, the magnitude of indirect costs (e.g., lost productivity, informal caregiving) can vary widely depending on the methodologies and assumptions used. Second, cost of illness studies may not be measuring the full spectrum ADRD costs; for example, financial impacts on households (e.g., reduced savings, financial exploitation, out of pocket costs, unemployment) may have substantial and intergenerational effects on the economy. Finally, some studies suggest that costs begin to accrue years before a dementia diagnosis, albeit at a comparatively lower rate than those in advanced disease stages. However, given the long preclinical stage (estimated at 10–20 years), it is possible that these ‘hidden costs’ represent a substantial fraction of cumulative ADRD costs. Given the current evidence base, we cannot accurately gauge the size of these ‘hidden costs’, making it challenging to quantify the full burden of ADRD and the potential value of health interventions and policies.

Fig.2

The cost of ADRD across the spectrum of the disease to key stakeholders groups. The nature (i.e., direct, indirect, intangible) and magnitude (i.e., low, medium, high) of ADRD costs incurred by different stakeholders varies by the stage of disease (i.e., preclinical, prodromal, mild, moderate, severe).