Defusing the devastating costs of dementia

Defusing the devastating costs of dementia
Image: Jackson Joyce for Quartz
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Back in 1800, a person could expect to reach the end of their life after just three decades on the planet. Global life expectancies ranged from 26 on the African continent to 36 in Europe and North America; on average, people lived to be 29

In just two centuries, humanity has more than doubled its life expectancy. The World Health Organization estimates that on average, a person born in 2016 can expect to live until 72

As people live longer, thanks to advances in medicine and greater access to health care, we’re getting older as a whole. Just two years ago, there were 962 million adults over 60 on the planet (pdf), up from 382 million in 1980. That population is expected to hit 2.1 billion by 2050. By 2100, people 65 and older will make up between 20% and 40% of most countries’ populations; right now, those figures are between 5% and 30% at most. At the same time the global aging population is expanding, we’re having fewer children: By 2030, older adults will outnumber children 10 and under.

For the most part, this is a good thing: It means more people have access to health care, sanitation, and reproductive rights. However, according to the International Monetary Fund, this demographic shift has the potential to slow GDP growth and strain national budgets as the burden of elder care falls onto working adults and governments.   

Plus, for all our work improving our lifespans, we haven’t found cost-effective ways to mitigate the health challenges that spike in old age. Death often comes after decades of slowly declining health, which isn’t pleasant—or cheap. 

In fact, just one age-related condition makes up nearly 10% of the $7 trillion spent annually on global health care: dementia. 

The annual global cost of caring for people with dementia is $1 trillion as of 2018—more than the GDP of the Netherlands in 2019. If the cost of care remains relatively similar or even decreases slightly, global expenditure on dementia care is set to double to $2 trillion (pdf) in the next decade or so. Collectively, Alzheimer’s and other conditions that lead to a severe decline in thinking, memory, and behavior made dementia the fifth leading cause of death worldwide in 2016. There are 50 million people living with Alzheimer’s disease, which makes up the majority of dementia cases, with about 10 million new cases cropping up every year.

Predictions are gloomy: By 2050, as many as 132 million people in the world will have dementia. Most of these cases will crop up in low and middle-income countries. Although dementia typically only affects 5% to 8% of people over 60, thanks to the ballooning elderly population, it’s expected to afflict 1.4% of the population in 2050, up from the 0.7% it affects today.

So we’ve got a problem: We know that ages are increasing globally, that the number one risk factor for dementia is age, and that dementia is one of the most expensive conditions to manage. How do we care for an aging population while preventing declining cognition from becoming a global money pit?

Realistically, scientists and policy makers will have to tackle the condition from all sides in order to soften its economic blow. First, there’s the most ideal situation: Preventing dementia entirely. To do that, scientists will have to figure out what causes dementia in the first place, and how to catch it early—both key to developing effective treatments. Scientists are closer to finding new drug targets, but when they do, it’ll be critical that patients can afford and access these treatments. And finally, there’s lowering costs of long-term care that most people with dementia ultimately need. 

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When the brain breaks down before the body

We often think of dementia as memory loss—which is why, for centuries, it seemed like dementia was just what happened with age. And it’s true: Some kinds of memory lapses or slower thinking and reaction times are normal with age, even if they don’t happen to everyone. 

Dementia, though, represents a serious, progressive degradation of the brain. It’s not just when you forget where you put your keys, says Walter Dawson, a health policy specialist who is a fellow with the Global Brain Health Institute in San Francisco. “It’s when you forget what your keys are for.” 

The largest, undisputed risk factor of dementia is age: Estimates vary, but one study of the European population suggests that less than 5% of people aged 65 to 69 have dementia. By 85, some 20% of women will have some form of dementia, compared to 10% of men. After the age of 90, those figures are 30% and 20%, respectively.

What’s actually going on in those brains as they age? Broadly speaking, scientists attribute dementia to the brain’s hardware breaking down in one way or another. Alzheimer’s is the most common type of dementia, making up between 60% and 80% of cases. Scientists define it by the chunks of proteins called amyloid beta and gnarls of another called tau that first build up in the brain regions that harbor our memories, and eventually spread outward. 

But dementia also includes accelerated cognitive decline resulting from chronic traumatic encephalopathy, frontotemporal dementias, Lewy Body dementia (which includes Parkinson’s disease), vascular dementia, and combinations of pathologies. In all cases, healthy brain tissue deteriorates as it’s crowded out by faulty proteins or other structural breakdowns. In the case of vascular dementia, tiny blood vessels burst throughout the brain. In some cases, like frontotemporal dementia, autopsies reveal shriveled brains where the front part has deteriorated.

Regardless of the mechanism, the effect is broadly the same: Nearby neurons and other brain cells first can’t communicate as well with each other, then choke without oxygen, and eventually die. But dementia can also change behavior, causing people to become inappropriate, depressed, or aggressive. As the disease progresses, it robs people of their ability to independently pay bills, cook, or drive. In later stages, people have a hard time staying in the present; they forget where they are, and who their loved ones are. The confusion can be terrifying—sometimes leading dementia patients to violence, especially as they lose their ability to speak and understand others. 

Every case is unique, but dementias always get worse over time. Eventually, the brain deteriorates to the point where it can’t control even basic bodily functions, like bladder control and swallowing. Dementia, combined with the other health complications it exacerbates, is ultimately fatal.

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The true costs of losing your cognition

Because dementia can manifest so slowly, and in so many ways, it’s incredibly expensive to manage. A study from 2018 found that in the US, average out-of-pocket expenses for a person living with dementia—usually covered by caregivers—was $432 per month, accounting for food and medical costs on top of those covered by insurance or Medicare. Considering a person with dementia may live up to 20 years (pdf) after their diagnosis, that’s some $100,000 out-of-pocket. 

Most of the costs of dementia are a result of the unpredictability of the disease. Our mental faculties are what make us us; we don’t need them to be physically alive, but they do help us take care of other aspects of our health. Often, a person living with dementia is also managing several other chronic conditions, like heart disease, diabetes, or lung disease. When cognitive trouble sets in, it can be harder for them to manage medications and other ongoing care.

If just one aspect of health gets out of control, people often wind up in the emergency department or hospital, where costs balloon. Hospital stays for most of the conditions people with dementia develop, like pneumonia or diabetes complications, wind up costing an average total of $10,000; the same week spent at home without a medical emergency for a person with dementia would be about $100, assuming the same out-of-pocket expenses above. 

Dementias make people more accident-prone. They may touch a hot stove or wander out into a busy road. Eventually, dementias also reduce a person’s ability to communicate, leaving them unable to speak up if they’re hungry, thirsty, or have to go to the bathroom. 

That means, eventually, most people with dementia need some kind of long-term care—which isn’t factored into the lifetime $100,000 in out-of-pocket costs. Long-term care costs depend on the type of institution, but none are cheap. They can range from an assisted-living facility, which costs a median of $48,000 annually, to private rooms in nursing homes that can be over $100,000 annually. 

A 2015 estimate calculated that long-term care currently costs $725 billion annually, most of which is unpaid caregiving from families. Medicare, the federal service that provides health care for retired adults over 65, doesn’t cover long-term care; it will only pay for 100 days in certain nursing homes after a person has been hospitalized. Medicaid, the state-run health care service for low-income adults, does cover nursing home care, but people with Medicare are only eligible to receive Medicaid after they’ve sufficiently depleted their savings. 

In advanced stages of the disease, people with dementia are at especially high risk for medical emergencies—especially when they have a harder time letting caregivers know that something is wrong. Another 2015 paper found that in the last five years of life, people with dementia racked up average medical bills of $287,038, more than $60,000 of which they had to pay themselves. Conversely, those who died of the leading causes of death in the US, cancer and heart disease, cost $173,383 and $175,136 respectively.

These costs, in combination with the growth of the global aging population, support the estimate from the 2015 World Alzheimer’s Report that dementia costs will hit $2 trillion by 2030. But some economists argue that the figure actually underestimates the total impact of the disease. “There are all these ‘spillover costs,’” says Julie Zissimopoulos, an economist at the University of Southern California. 

It’s hard to pin down the exact financial burden of dementia caregiving, because about 40% of it is attributable to unpaid work, like people taking care of their loved ones by themselves. In total, this adds up to some $230 to $450 billion for unpaid care in the US annually. Caregiving is often stressful and demanding—so much so that caregivers don’t have time to make their own routine health visits, leaving medical problems to pile up until they’re more expensive to treat. Many caregivers also end up leaving the workforce—meaning they stop contributing to both the economy and their retirement savings. 

If they’re not pulling from their own savings, caregivers may rely on their loved ones’ savings to cover the high costs of hospital visits or long-term care. This may seem perfectly reasonable—it’s the person with dementia’s money, after all—but if all that money is spent on end-of-life dementia care, there’s less left for future generations. “One way in which inequality is transmitted across generations is through wealth,” says Zissimopoulos. The burden of dementia could hit those who are already poor the hardest, increasing the wealth gap and potentially even slowing down growth in gross domestic product. 

It’s a problem that is only going to get more expensive—unless we find a way to intervene.

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What it takes to save a memory

The health news outlet STAT recently reported that the single best way to cut down on future dementia cases—and therefore costs related to the disease—would be to prevent people from developing the disease at all. In the US, this would lower the projected cases of dementia from 13.8 million in 2050 to 3.2 million, with those figures dropping over time. 

The problem: While it’s obvious that dementia is related to age, scientists haven’t been able to pin down the other factors involved. Without those, the prevention game is mostly throwing out different ideas and seeing what sticks. The drugs currently available for dementia can prop up memory function for a while, but eventually the disease progresses to the point where they no longer work. The last one of these drugs was approved by the US Food and Drug Administration in 2003. Since then, the field of dementia pharmaceuticals has become infamous for its high failure rate.

There is one hope the horizon: Earlier this year, the company Biogen said that re-analyzed data from a late-stage clinical trial—one that had been halted for lack of efficacy—showed that its amyloid-targeting antibody did in fact slow the progression of Alzheimer’s disease. The company has stated they plan to submit the drug for approval in early 2020, and if the FDA agrees, there could be a new treatment available next year. The company plans to announce the full results of this trial at the Clinical Trials on Alzheimer’s Disease conference in San Diego this week. 

While a new drug would certainly be progress, this one wouldn’t eliminate Alzheimer’s—just slow it. And realistically, medicine needs several options to treat the diversity of dementias and people suffering from them. About 1% of all Alzheimer’s cases are caused by one of three dominantly-inherited mutations. But outside of these few cases, scientists still haven’t isolated the causes of most kinds of dementia. 

They have several leads. Factors like environment, diet, stress, mental health, education, and other conditions like heart disease seem to all play a role. Gender does, too: Women are more likely to develop dementia as men, and sexual and gender minorities may also be at an increased risk. Although the scientific community has historically excluded most people of color from clinical dementia research, it appears that African Americans and Latinos are also more likely to develop dementia than whites, whereas people of Asian descent may be slightly less likely to develop it. There are other genes that merely increase a person’s risk of developing dementia, but scientists haven’t figured out how they work.

Without understanding the biological logic of those risk factors, it won’t be possible to forestall dementia. Maybe women have higher instances of dementia simply because they live longer than men. Minorities may be at increased risk because they tend to be poorer and therefore excluded from high-quality health care or foods, or because they have higher exposure to lifetime stress due to racism. 

The one biological pathway with promise right now comes down to something woefully simple: a healthy lifestyle. Earlier this year at the Alzheimer’s Association International Conference, some of the most robust research presented showed that individuals who ate a healthy diet, exercised regularly, avoided smoking and drinking, and stayed mentally fit through social engagement or stimulating activities developed dementia less often than those who did not—provided they did at least four out of those five things. Out of a group of nearly 3,000 older adults, about one in 100 people who didn’t adopt healthy habits developed Alzheimer’s over the course of six years. Among those who did adopt healthier habits, that rate was cut down to one out of every 300 people. Bonus: Unlike drugs, most lifestyle changes are free.  

In practice, it’s not a perfect solution. Lifestyle changes can’t actually prevent dementia: Some perfectly healthy people still go on to develop the disease. And the ability for individuals to make those kinds of healthy changes is highly dependent on circumstances. Older adults are more likely to have physical limitations that may make moving around difficult. Accessing high quality food can be a challenge; it can be expensive or impractically time-consuming for those living on a fixed income or in rural areas. A 2019 report from the nonprofit group Feeding America found that 5.5 million seniors in the US were considered to be “food insecure.” 

But in the wake of failure after failure of drugs to stop the disease, living a healthy lifestyle is the only advice health care providers give people to try to stay dementia-free. 

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If you can’t prevent it, treat it better

We can’t put a stopper in the cost of our globally aging population by preventing dementia—at least not yet. But there are other ways to lower the cost curve. First, we will need to focus on early detection. That allows for the second cost-saver: planning ahead for long-term care. Finally, we can embrace palliative care at the end of patients’ lives.

Early detection

Today, researchers think that one of the reasons so many Alzheimer’s drugs have failed is because patients have gotten them too late—when dementia was already moderate to severe. Assuming that each case of dementia costs $341,840 over a lifetime, prevention and early detection could save about $1.1 trillion by 2050, using a rough calculation with STAT’s lowered case estimate for the US.

Researchers at the Mayo Clinic in Rochester, Minnesota first recognized an early stage of dementia—called mild cognitive impairment, or MCI—two decades ago. In doing so, they established an important benchmark: Dementia is not a sudden onset of mental deterioration, but a slow process that can take decades. 

Many researchers, therefore, think that the key to treating dementia is to intervene earlier. It’s possible that late diagnosis has contributed to the hundreds of drug failures for dementia in recent decades; even if experimental therapies were working, maybe they had just been administered too late. 

Additionally, some of the previously-approved drugs, like Aricept or Razadyne, can also help slow the progression of Alzheimer’s, which can buy patients some time before they need more intensive care. There’s evidence that taking extra steps to stay on top of other medical issues, like high blood pressure or diabetes, can ease the progression of dementias, too. 

That’s why, in 2011, the US passed a law that requires Medicare to cover a cognitive health assessment as part of primary care visits for people over 65. If people were aware of their cognitive decline earlier, there are steps they could take to slow the progression of the disease. 

But the medical guidelines for diagnosing dementia are still clunky. The language in the 2011 law is vague, and doesn’t specify how a doctor should assess patients. Sometimes, a health care provider will merely monitor their interactions with the patient during the first few minutes of the exam. “It’s not a full-blown assessment for dementia,” says Joanne Pike, the chief program officer with the Alzheimer’s Association. A recent report from the association showed that only about 16% of seniors (pdf) report having any kind of cognitive assessment given in their doctors’ office, thanks in part to the stigma that cognitive impairment has to do with intelligence or lack of independence.

These days, a “full-blown assessment” typically means that a patient will take one of several validated cognitive tests—think IQ tests, but easier—that can take anywhere from 10 to 30 minutes. But while these tests can pick up when a person is severely cognitively impaired, they may not capture MCI.

There are ways to definitively diagnose Alzheimer’s disease, the most common form of dementia in the world. In the early 2000s, researchers developed positron emission tomography scans, or PET scans, that could pick up on some of the Alzheimer’s-associated proteins in the brain, or spinal taps that could find them in the fluid surrounding the brain. “These techniques are frequently used when the diagnosis is in question,” says Gregory Jicha, a neurologist at the University of Kentucky. “But they’re invasive and expensive.” 

Spinal taps are covered by insurance, but aren’t exactly pleasant; they involve sticking a needle into the fluid in between vertebrae in the spine. PET scans are more tolerable, but they cost thousands of dollars, even with a Medicare reimbursement. Both are only covered by insurance after a person shows signs of cognitive decline—which means they’re not even getting an early diagnosis. 

So scientists all over the globe are looking for new ways to pick out mild cognitive impairment or dementia. Some are working on tests that seem to be particularly good at picking out subtle changes in cognition. Others are looking for biomarkers, or chemicals that indicate brain damage has occurred, in the blood, or other sensory changes that can work as a proxy to detect cognitive decline. None of these early detection methods have made it far enough for clinical use yet, though.

Planning ahead for long-term care

If a person living with dementia gets diagnosed a few years sooner, Dawson explained, their total costs go down by an average of 17% per year. And these savings come just from being able to take the time to make decisions about future care, as opposed to going with whatever option is available at the point of a crisis—like a broken hip that signals a person can no longer live at home. 

If doctors can predict cognitive decline, it will be far easier for patients living with MCI and dementia to eventually plan for their care. This is where a lot of cost savings come in. 

Right now, a person diagnosed with dementia may try to stay at home with their caregiver like a spouse as long as possible. At a certain point, their dementia may progress to a point where they can’t be left alone at all, even while the caregiver takes a five-minute break to shower. 

Say that person with dementia were to burn their hand on the stove while the caregiver was otherwise occupied. That may be what policy experts call a “crisis point” that sends them to the hospital—a bill in itself—to have their hand treated. At that point, it also becomes clear that they can no longer live at home. Out of lack of options, they’ll bounce over to the first nursing home that has a spare room, without being able to shop for the best care and price. 

Medicare will cover some of that stay, but only for a limited time; afterward, the person’s caregiver has to pay out of pocket for the home, which can cost anywhere from $7,500 a month and up, depending on the privacy of the room. 

An earlier diagnosis with MCI or dementia enables individuals to think about the specific goals and care needs—planning for them practically and financially—before any of that happens. A person and their caregiver can figure out what local options exist for social support, like access to senior community centers, adult day cares, part-time home-nursing, or an assisted living community. All of these services keep a person aging outside of the hospital, where costs for care are highest.

The quality of nursing home care can have an effect on cost, too. The main goal is keeping residents out of emergency rooms and hospitals, which can be hard if staff aren’t well-equipped to handle residents with dementia.

While better nursing homes won’t completely eliminate the need for all emergency room visits, there’s some evidence that different structures can lower them. The Eden Alternative, a non-profit organization created in the 1990s, promotes person-centered care for older adults living either at home or in assisted-living or nursing homes. This means making simple changes around nursing homes, like keeping the same staff working at the same times daily so that residents can get to know them, and vice versa.

With more personable relationships, staff may be able to pick up on minor changes in a residents’ behavior that signal distress sooner. One study from 2005 from a Texas-based nursing home found that with these structural changes, they saw fewer behavioral incidents and bedsores on residents. Conversely, they needed to hire fewer staff members, and those members took fewer sick days to compensate for burnout.

The end game: palliative care

Right now, the most expensive part of a person with dementia’s life are their last five years, when they’re in and out of hospital and intensive care units. These costs can hit nearly $300,000, which is about $100,000 more from patients dying of cancer or heart disease. If patients have a plan for how they want to extend their final days, they may not need costly interventions like feeding tubes or intubation. 

Dying can be expensive—especially if a patient or their families want to do everything in medicine’s power to avoid it. Some terminally-ill people elect not to go through these last measures of life extension, and instead elect care that makes them comfortable for as long as possible: hospice. It is covered by Medicare, provided that at least two doctors believe that a person’s lifespan falls in a six-month window. 

Hospice is a type of palliative care, which is a coordinated care approach that focuses on a person’s comfort and goals instead of extending life. Although it’s not covered by Medicare, hospitals are usually happy to absorb most of the costs of palliative care because it’s not nearly as expensive as life-saving treatments, Mary Moscato, the president of the Hebrew SeniorLife’s Health Care Services and Hebrew Rehabilitation Center, explained to Quartz. (The physician on someone’s palliative care team can be reimbursed by Medicare.)

For a long time, palliative care was only utilized for terminal cancer patients. Instead of intervening with life-extending measures, a team of palliative care specialists, which often includes a doctor, a nurse practitioner, and sometimes even chaplains, would focus on making sure a person was comfortable and calm. 

More recently, though, specialists have realized that palliative care is appropriate for dementia patients, too. Modern healthcare has advanced to the point where people can actually die of dementia. But if a person elects palliative care early in the course of their dementia, they can adjust it as the disease progresses. At first, when they still have many of their mental capabilities, they may choose to get community-based care through occasional home nurse visits. Then, later, they can choose when it’s appropriate to focus more on comfort than life extension. 

In theory, if a person with dementia is capable of deciding early what is best for them, they can save thousands of dollars and stress down the line for their loved ones. At the moment, this may be the solution to costs that’s most within reach.

Correction Dec. 9: This story has been updated to reflect Mary Moscato’s title at Hebrew SeniorLife.