The True Cost of Dementia: Unpaid Care Falling on Family and Friends Reaches $224 Billion

Dementia affects approximately 5.5 million Americans, with an estimated annual medical expenditure of around US$53 billion covering doctor visits, hospital stays, medications, home health services, and nursing facilities. However, this figure underestimates the total economic impact, as a significant portion of caregiving is provided unpaid by family members and friends, adding an enormous hidden cost. Researchers, including myself, set out to quantify the comprehensive costs of dementia—not just within the healthcare system but extending to families and communities. When accounting for the value of unpaid care, the total cost skyrockets to about $277 billion annually, representing a fivefold increase from the direct medical expenses.

Our analysis also revealed stark regional disparities in costs across states. For example, the average annual expense per person living with dementia in Washington D.C. is about $37,000, involving both medical costs and unpaid care, whereas in West Virginia, it jumps to approximately $61,000. Intriguingly, states with some of the highest costs are among the poorest, which highlights the significant role of unpaid caregiving hours—often overburdened caregivers in these regions provide extensive care despite limited resources.

Unpaid caregiving has profound economic and personal implications. Although no monetary transactions occur, this resource use reflects the enormous time and effort invested by caregivers, impacting their well-being and financial stability. Our recent work indicates that around 12% of caregivers have to cut back or leave their jobs due to caregiving duties, and many experience decreased productivity or diminish other leisure and volunteer activities.

Direct medical costs are relatively small partly because current treatments for dementia are limited. While new medications like the FDA-approved Leqembi offer hope, they are accessible only to a small fraction of patients. The substantial hours of unpaid care are driven by the progression of dementia, which intensifies the need for supervision and assistance with daily activities as the disease advances. Variations in care hours across states are influenced by factors such as the prevalence of chronic illnesses, lifestyle risks, and availability of community resources, including support programs.

Looking ahead, it is vital for researchers to continue exploring dementia costs in the post-COVID-19 context. The pandemic has strained caregiver resources, with many states experiencing closures and shortages of essential services such as adult day centers and home health agencies. Programs like Meals on Wheels face increasing waitlists, and federal support cuts threaten to exacerbate these issues.

Our findings emphasize the crucial role family caregivers play, especially in economically disadvantaged states, underscoring the need for policies and programs that address these disparities. Improved understanding of these factors can help inform strategies to support caregivers and reduce the overall burden of dementia on individuals, families, and society.

Source: MedicalXpress article