Approximately 5.5 million Americans live with dementia, which represents an annual medical expense of 53 billion dollars in medical consultations, hospitalizations, medications, home health auxiliaries and residences for older people.
However, the real cost of care for dementia in the US is much greater, since it depends largely on unpaid care provided by family and friends.
I am a researcher and study health spending. My colleagues and I set out to quantify the real costs of care for dementia, not only for the health system, but also for families and communities. When considering the value of unpaid care, we discover that the total cost of care for dementia is quintupple, reaching 277 billion dollars annually.
Our estimate – a pioneer in its type – of the costs per state revealed important geographical disparities. In the Columbia district, the average annual cost per person with dementia, including both medical expenses and the value of unpaid care, is $ 37,000.
In Western Virginia, that figure amounts to $ 61,000.
In addition, we discovered that the total cost was greater in some of the poorest states. West and Kentucky Virginia, for example, are among the three most expensive states, despite having a low cost of living. The main factor that contributes to these high costs is the amount of unpaid care hours.
Why is this important?
Studies on the cost of diseases usually include the monetary value of unpaid care, which economists call indirect cost. Although there is no money exchange, this type of attention represents a significant use of a valuable resource: the time of the caregivers.
Taking care can be rewarding, but also has tangible impacts on the physical, emotional and economic well -being of those who provide it.
A recent study of our team revealed that 12% of caregivers have had to reduce their workday or completely leave their job. Those who remain in the workforce often lose work days due to their responsibilities or experience a decrease in their productivity.
In addition, unpaid caregivers usually give up other important activities, such as volunteering or leisure time. The indirect cost of attention takes special relevance in the case of dementia.
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Direct medical spending on this disease is relatively low due to the shortage of effective treatments. Although the FDA recently approved a new drug for Alzheimer’s, Leqembi, its use is limited to a small proportion of people with dementia.
However, those who live with dementia require more hours of attention than other older adults. While many older adults eventually need help with daily life activities – such as eating or bathing – people with dementia often require constant or almost constant supervision.
The fact that our study also identified a wide variation in indirect costs between states raises important questions about why the number of hours of unpaid care according to the region varies so much. In this sense, it is worth considering several contributing factors.
First, many of the states with the greatest average of unpaid care also have high rates of chronic diseases, such as diabetes. People with dementia and other conditions will require more attention.
Likewise, the severity of dementia directly influences the amount of attention necessary. The disease progresses gradually – from mild to moderate and then serious – and each stage requires a increasing load load.
The average severity of cases probably varies between states, due to differences in risk factors such as smoking, obesity and other social determinants of health.
Finally, the level of government and community support, including programs such as Meals on Wheelsvaries considerably from one state to another, which also influences the level of informal care that families must assume.
What follows?
Researchers should continue to analyze the costs of dementia care in the post-Covid-19 era, since it is likely that the stress factors for caregivers have increased.
Almost all states face scarcity from home health professionals, and during the last year many have experienced the closure of day centers for adults, assisted life residences and home medical care agencies.
In 2024, one third of home meal programs had waiting lists. This shortage could be aggravated due to mass cuts to federal programs carried out by the Trump administration.
Recently, the Department of Health and Human Services announced plans to dissolve the administration for community life, which supervises the agencies of the area for aging, a network of non -profit organizations that manage food meals and other services aimed at maximizing the independence of older people.
Our study highlights the enormous contribution of family caregivers and disproportionate dependence on unpaid care in states with some of the highest poverty rates in the US.
More research is required to identify the factors that promote these differences and improve the well -being of caregivers.
*Amy Lastuka She is the main scientific researcher at the University of Washington
This article was originally published in The Conversation
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