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The Burden of Brain Disease

The impact of brain disease goes far beyond its immediate symptoms. Brain disease often takes a social, emotional, and financial toll on the individual and their loved ones.

Brain disease can involve financial strain, negatively impact a person’s mental and emotional health, and put stress on personal and family relationships. The challenges of brain disease require a strong network of family and friends who are willing to go the extra mile to act as caregivers and provide a support system. All of these aspects contribute to the overall burden of brain disease.

What Is Disease Burden?

In the case of brain disease, burden refers to the larger impact of a disease on a person and their community. Brain disease often prompts changes to people’s social lives, not just for the person who is diagnosed, but for their family and friends as well. Many times, other people may have to act as caregivers, help manage the household, provide financial support, or simply deal with the change in their relationship with their loved one. People living with brain disease also experience a financial impact, from paying for medical care and medications to adjusting their home environment and lifestyle to accommodate their needs.

Health organizations like the CDC often consider the “burden of disease” on a broader scale. They account for a range of health, social, political, environmental, and economic factors when calculating the full “cost” of disease on an individual and society. This goes beyond the direct health care expenses and includes the social and economic losses caused by disease and disability, the availability of medical care, and other public health problems.

The Challenges of Disability

Many brain diseases contribute to the degree of disability that impacts a person’s ability to work and participate in social activities, in turn affecting their financial and emotional well-being. According to the World Health Organization, neurologic conditions are the leading cause of disability adjusted life years (DALYs). Some of the top conditions that contribute to neurological DALYs include stroke, migraine, dementia, meningitis, and epilepsy.

For people like Julie Turner, one of the most challenging consequences of brain disease was no longer being able to work. Her career as a nurse brought her joy for decades, but the impact of cerebral small vessel disease (CSVD) on her memory and thinking skills eventually meant she couldn’t safely do her job. “I loved my job for 40 years and was forced to quit,” she says. “That was hard for me, to lose my whole career.”

Disability can also require additional care and support in the form of hired or family caregivers, transportation, adaptive equipment, and more. With neurodegenerative diseases, the degree of disability—and the level of care required—often increases over time. Globally, the number of people who are 60+ years old is expected to rise from 1 billion in 2019 to 2.1 billion by 2050. Many brain diseases first start showing symptoms in later years or progress more rapidly due to the aging process, and with this growing population, we can expect a larger social burden from age-related diseases.

The Financial Costs and Economic Burden of Brain Disease

The direct and indirect costs of brain disease are significant. One study estimated the economic burden of major neurologic diseases to be approximately $800 billion annually in the United States. Alzheimer’s disease and other dementias are the largest contributors to this figure. 

The economic costs of brain disease not only include the burden of care but also factors like lost wages—both for an individual who is unable to work and for loved ones who need to become caregivers. According to a recent AARP study, 8 out of 10 people surveyed said they regularly have to pay for daily caregiving costs that aren’t covered by insurance. The survey found that the typical annual total for out-of-pocket caregiving costs is $7,242. Many caregivers also have to take time away from work or shift to part-time schedules, dip into savings, or cut back on retirement contributions.

“I wish people knew that it doesn’t just affect the person, it affects the whole family,” says Courtney Fraser, who lives with a traumatic brain injury and epilepsy. “It costs money for medications, it costs money for doctor appointments, it costs taxpayers a lot to help people who are on Medicaid—and a lot of people with epilepsy and other brain diseases have to be on Medicaid because they don’t have income.”

Many families also have additional expenses in the form of professional caretaking services, adaptive equipment, and home modifications. For example, caring for someone with spinal muscular atrophy (SMA) may require a manual or power wheelchair, adaptive stroller, car bed (to allow them to lie down while traveling), and medical equipment like feeding tubes and machines to keep their airway clear. Families may also need to modify their home environment with ramps, widened spaces, adaptive seating, and other items that make daily activities safe and comfortable.

The Emotional Toll on Loved Ones

Brain disease can have a major impact on a person’s relationships with their family and friends.  Managing brain disease often puts strain on the entire family and support network, especially as they face changing relationship dynamics and expectations of what the future will look like.

A family member may have to transition to a caregiving role, which can feel overwhelming and demanding. “Caregiving is one of the most mind-bending, surreal, frustrating, exhilarating, and lonely experiences that one person can go through,” says Dan Gasby, author and caregiver advocate. The heavy emotional burden of caregiving can lead to mental health issues for the caregiver, such as anxiety and depression.

There are currently about 48 million individuals caring for an adult family member or friend. Caregiving requires balancing many demands, including coordinating responsibilities, navigating the healthcare system, and providing physical care. It’s important for caregivers to get respite and support so they can alleviate stress and reduce feelings of isolation.

The Social Inequities of Brain Disease

The burden of brain disease also extends to socioeconomic and racial disparities—notably the tremendous racial disparities that exist for Black populations in the U.S. 

“Brain health is the greatest 21st century civil rights issue,” says Gasby. “When you lose your cognitive ability, your rights as a human being are greatly diminished.” He notes that this is particularly devastating for Black people in the U.S., who are twice as likely as non-Hispanic white populations to develop late-onset Alzheimer’s and less likely to have a diagnosis of their condition, which often results in significantly less time for treatment.

While the burden of brain disease is significant, there is an opportunity for change. Creating awareness is only the first step. Along with our partners, donors, and supporters, the American Brain Foundation works to address these issues by supporting brain disease research, providing educational resources, and promoting advocacy efforts. Together, we can take steps to reduce the burden of brain disease for all of us.

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.