Healthy Living

New Simulation Reveals Family Cost of Alzheimer's Disease

New Simulation Reveals Family Cost of Alzheimer's Disease

Approximately 5 million individuals in the United States suffer from dementia, Alzheimer’s disease, or another type of neurological disorder. Such conditions can be expensive to treat and sadly, the financial burden falls on the patients and their families as opposed to receiving help from government insurance programs.

While there is hope that programs such as Medicaid and Medicare will step in to help, a new simulation created by researchers at the Brown University School of Public Health shows that this probably will not be the case.

Assistant professor and lead author Eric Jutkowitz states: “A lot of people, I think, believe that Medicare will pay for their long-term care. That's not the case. Private long-term care insurance may help, but benefits can be exhausted and few families have policies. For a disease like dementia, the burden and cost falls on the individual and the family.”

More about the new simulation

The new simulation shows that over the course of five years, the average cost of care for an individual with dementia estimates to just over $321,000, whereas the average cost for an individual without dementia estimates to approximately $137,000. More than double the healthcare costs are affecting U.S. families, who are paying out of their own pockets. Even with the even split between Medicaid and Medicare, every year the costs of healthcare services (from check-ups to acute hospitalizations) reach as high as $89,000.

By 2029, it is estimated that 61 million baby boomers will be of age 65 or older – the crucial age for neurological disorders such as AD. The findings of the new simulation are based on evidence associated with the clinical progression of dementia symptoms. That is, it provides a unique approach to understanding how the costs of dementia change throughout the years as individuals with dementia shift from informal care at home to institutionalized care in nursing homes. Lead author Eric Jutkowitz states: "The modeling structure I used was able to synthesize data from different sources and put them together to form this long-term picture, over the course of the disease that currently doesn't exist in any one place. Each of the data points are part of the broader picture. By themselves, they can't tell us anything about how costs unfold over the course of the disease, but they all come together to develop this picture." The data relating to dementia costs is gathered from several sources and it is crucial to families in planning household budgets, as well as to the government in shaping public insurance programs.

How were the results achieved?

For the purpose of the study, Jutkowitz and his co-authors at the University of Minnesota ran 16,000 hypothetical seniors through the new simulation. The seniors differed in terms of gender, income, race, education, geographic location, number of children, and Medicaid eligibility. Each senior was assigned one or more medical issues such as congestive heart failure, stroke, or diabetes. The team tested out different factors on each senior such as behavior, progressively worsening condition, physiological symptoms, and independence in performing everyday tasks. Based on the conducted research, the findings revealed that as the dementia symptoms progressed, the need for care rose drastically.
The evidence indicated that family members provided informal care at an estimated value of $19.71 an hour, while professional caregivers provided care at $22 an hour. As the data suggested, the hypothetical seniors would have to move to an institutional healthcare setting, such as a nursing home, as their conditions progressed. There, doctor visits and hospitalizations would have to be taken into account, along with other medical problems that might arise. Some costs may be covered by Medicare, although others may lead to out-of-pocket expenses. The findings revealed that the typical senior lived for approximately five years following diagnosis of dementia, before giving in to either the disease itself or another medical problem.

In another simulation run, the exact senior was computer generated to be just as healthy or ill as before, although this time being without dementia. This run allowed Jutkowitiz to record and compare the costs relating to healthcare services for individuals with dementia and those without dementia. Jutkowitz suggested that while most aging individuals might encounter medical problems, individuals with dementia would require prolonged intensive care, either by family members, a hired medical staff, or a mixed arrangement. “The predominant cost drivers are the loss of independence and the challenging behavioral symptoms such as aggression,” he said.

What do the results mean?

The overall results from the new simulation allowed Jutkowitz to recognize the difference that dementia could make in the long run. He ran both best-case and worst-case scenarios for the purpose of comparing and contrasting costs relating to individuals diagnosed with dementia earlier or later in life, as well as those who lived shorter or longer lives. He was also able to determine additional costs of dementia for aging individuals based on different factors such as behavioral or psychological symptoms. In the study, Jutkowitz found that an intervention, such as reducing the rate of functional decline by 10% on an annual basis, could save each senior approximately $3,880. Moreover, estimated projections showed that reducing the number of psychological and behavioral symptoms by the same percentage could save each senior an additional $680. However, what really makes the new simulation powerful is its ability to take into account the severity of dementia symptoms and play out the impacts that such symptoms can have on different scenarios. Jutkowitz and his team have invented a tool for the purpose of shaping policy changes and focusing on factors that prove to be cost-related. They hope that the new simulation could prove to be a useful and valuable approach to saving families from vast financial burdens.

Dementia is a general term that is used to describe a wide range of symptoms relating to difficulties with memorizing, thinking, speaking or problem-solving. Such changes often begin slowly; however, if the condition becomes severe enough, it can affect an individual’s ability to perform daily activities. Moreover, an individual with dementia may experience mood swings or behavioral changes. Alzheimer’s disease, also known as AD, is a common form of dementia that accounts for 60-80% of cases. In fact, dementia occurs when the brain becomes damaged by diseases such as AD or after a stroke. This damage affects the brain cells ability to communicate with one another. Thus, normal behavioral function becomes impaired.

The brain is comprised of several different regions, each responsible for a particular function – such as thinking, memorizing, moving, and more. For instance, in Alzheimer’s disease, particular proteins that circulate inside and outside the brain cells make it difficult for the brain cells to stay healthy and perform normal functions. Since the brain region that is affected is the center of memory, emotion, and learning – also known as the hippocampus - this is why memory loss is a common and early symptom of AD. While most changes that arise from dementia are severe and some even permanent, thinking and memory problems caused by conditions such as thyroid problems, depression, and excessive use of alcohol or medications can improve when the condition is addressed or treated. Therefore, the specific symptoms that an individual with dementia experiences generally depend on two things: the disease that is causing the dementia and the parts of the brain that have become affected.