I tried to kill my father for years. To be fair, I was following his wishes. He’d made it clear that when he no longer recognized me, when he could no longer talk, when the nurses started treating him as a toddler, he didn’t want to live any longer. 

My father was 58 years old when he was diagnosed with Alzheimer’s disease. He took the diagnosis with the self-deprecating humor he’d spent a lifetime cultivating. He constantly cracked jokes about how he would one day turn into a zombie: a walking corpse. We had a good 10 years with him after the diagnosis. Eventually, his jokes came true.

Many people lose their balance with Alzheimer’s. They fall, break a hip and never really recover. Not my dad. Ten years into his diagnosis he was still hitting six under par at his local golf course. His golf was so good, none of his buddies realized he had Alzheimer’s. He kept on walking until the very end of his life. In happier, healthier years, I had gone hiking with him in Nepal. Buddhists there believed that you could walk off all sins. If that’s true, he certainly died sinless. 

Seven years before he died, he forgot my name. Three years before his death, he forgot my mother’s existence. His speech devolved into word salad. “Honey, garbage bag synopsis toothbrush Bella potato beetle?” he would ask. I would reply as though I had understood: “Yes, Gray.” I had taken to calling him by his childhood nickname. He didn’t respond to “dad;” he no longer realized he was a father. 

He took to peeing on the plastic plants in his facility, and in other inappropriate places. The nurses dressed him as an infant, with diapers and a onesie. Sleep eluded him: when he slept at all, it would be on the nearest couch. He could no longer distinguish his room from others. With no pattern I could figure out, he would hit me and hit his nurses. He would attack the walls.

Assisted suicide as such was out of the question for us, for a number of reasons. Killing my father involved taking him off his heart, stroke, and cancer medications and allowing him to eat whatever he liked, even if that meant 10 Klondike bars a day. Whatever made him happy. It seemed the only thing he remembered how to do was walk. He walked until the last week of his life. Shortly after he forgot how to walk, he forgot how to swallow. Inhaling food and spittle, he slowly choked to death—a fate unfortunately common for those living with Alzheimer’s.

A Coming Spike in Alzheimer’s

If you are a 70-year old American who has not been diagnosed with Alzheimer’s, your odds of living another decade are reasonably good: a bit better than two in three.  If you have Alzheimer’s, those odds are just about reversed. Of 70-year old Americans with Alzheimer’s, 61% are expected to die before they turn 80. According to government statistics, Alzheimer’s is the sixth-leading cause of death in the United States: 110,561 people died from it in 2015.  This is a substantial underestimate. Alzheimer’s can cause accidents and respiratory diseases—both among the top five causes of death—so deaths for which Alzheimer’s is a central but indirect cause are not counted.1 

About 50 million Americans are at least 65 years old. About 5.7 million of them—more than one in ten—have Alzheimer’s. The oldest members of the post-World War II “baby boom” generation are entering their 70s—the decade in which Alzheimer’s prevalence rises rapidly. Of those over the age of 85, about a third have the disease.2

No cure for Alzheimer’s is known, and none is in sight.3 Put this together with general increases in life expectancy and the demographic peak of the baby boom, and you get the inescapable conclusion that the number of people living with Alzheimer’s is about to skyrocket.

Researchers from the Rush Institute for Healthy Aging in Chicago estimate that by 2050 some 14 million Americans—nearly three times as many as at present—will have Alzheimer’s dementia.4  Taking into account other, related forms of dementia, this number rises to nearly 30 million people, or about eight percent of the country’s total population. This epidemic is arriving in a society poorly equipped to cope with it.

Our health insurance system is failing those with chronic and degenerative diseases. Our economy is structured to make it difficult at best—and in many cases impossible—to give adequate care to adults who cannot get through the day on their own, without help.

A cure for the disease is unlikely for the foreseeable future. It is thus crucial to devise fundamentally new ways to structure the care of Alzheimer’s patients. We must change how dementia is managed in a way that improves the quality of life of those who have the condition and also keeps it from derailing the lives of loved ones who care for them. 

The American health-care system as it currently exists does not resiliently respond to dementia. Some individuals—whether those who are living with dementia or caregivers—display remarkable levels of resilience. Under no circumstances will this be an easy disease to cope with. But whether in the early or the late stages of disease, a better-designed system will not only use resources more efficiently, but also help more people be healthier, or at the very least, happier, for longer than at present.

A 2010 study of nearly 1,000 residents of senior housing in the Chicago area, 155 of whom developed Alzheimer’s, found that giving the elderly a sense of purpose may reduce their risk of developing the disease.5 However, as the same research group reported in a 2017 follow-up, the reasons for this remain poorly understood: “psychosocial behavior influences late-life cognitive health through multiple neurobiologic [sic] mechanisms. A better understanding of these mechanisms may lead to novel strategies for preserving cognitive health in old age.”6 Efforts to increase the resilience of the elderly to dementia may have more generalized benefits, as researchers at Ohio State University who have created a pilot program called “Resilient Aging,” pointed out in a 2016 study.7 These sorts of efforts are important not only for the elderly themselves, but also for caregivers. As a 2014 review stated: “There is accumulating evidence that chronic dementia caregiver stress increases their vulnerability to disease and diminishes their ability to provide optimal care.”8

A Nascent Field of Research

The human brain comprises about 100 billion neurons, or nerve cells. These connect with one another in myriad ways, via chemicals and electricity. Just like the hundreds of other cell types in the human body, each neuron has complex internal structure.  Like other cells, neurons are, in part, made of proteins. They also synthesize proteins.9

Much about Alzheimer’s is not yet understood. Alzheimer’s and related dementias are commonly misdiagnosed, especially in cases of early onset, like my father’s. He was initially misdiagnosed with Parkinson’s. The one unifying factor between the various diagnoses is memory loss. Short-term memory is usually the first to go. The loss is gradual, and gets progressively worse. When he was first diagnosed, my father took a series of memory tests. The second neuropsychiatrist he saw gave him a simple test which he told us was the standard. It was startlingly simple and telling: he asked my father to remember a series of three random numbers. On three occasions as the consultation continued, the neuropsychiatrist asked my father to recite the numbers. My father only got first two numbers right on the first pass and none on the next two passes. How many numbers one gets right on each pass can tell a doctor a lot about their cognitive state.  

My father’s cognitive impairment was reflected in scans of his brain using magnetic-resonance imaging (MRIs) , which detected a buildup of a form of proteins called amyloid plaques.  Such buildups in the brain prevent neurons from communicating with one another as they normally do. As proteins accumulate between neurons, the neurons die. But researchers debate whether the extra protein is killing the neurons, or whether it results from their death (or, for that matter, both).10

Just as the underlying biochemistry is still poorly understood, so too is what Alzheimer’s does to the mind. Thought is scrambled, if it remains. Memory, ability, and personality dissipate, but return in sporadic bursts. Sometimes they are gone forever. My father’s final brain scans in the last year of his life showed his brain was more than 70 percent liquid.11

Though Alzheimer’s is the most common form of dementia, diagnosis isn’t certain until after death. A build up of amyloid plaques in the brain may lead to Alzheimer’s. Or they may not. Likewise, cognitive impairment may lead to dementia. It may not. A combination of them both likely means Alzheimer’s or a related dementia, but not always. Often, the diagnosis comes only after doctors have ruled out all other possibilities.12

Not all dementias are the same. Though Alzheimer’s is the most prevalent, its diagnosis is uncertain until an autopsy is performed. Autopsies are rare.13 The vast majority of deaths suspected to be related to be to Alzheimer’s don’t have autopsies done and so the diagnosis is never confirmed.

Frontal temporal dementia usually involves a much more precipitous decline than Alzheimer’s. Its symptoms are often very physical—loss of balance and aggression are common. Lewy Body dementia simply befuddles. It can cause hallucinations and can seem like Turrets—those living with the disease can be inappropriately honest and blunt. Vascular dementia can be brought on by alcohol or by brain damage resulting from vascular or heart disease. Dementia can also be a symptom of late-stage Parkinson’s, which is a degenerative neurological disorder that slowly robs people of bodily control.14   

There are more than 100 pharmaceutical trials for Alzheimer’s and related dementias in the pipeline.15 Despite the large number of people with Alzheimer’s, there is a shortage of trial participants.16 Increasingly, research is focusing on earlier and earlier phases. Researchers now believe the disease first manifests upwards of 20 years before the first symptoms appear. Which means that trials are trying to recruit asymptomatic people, often with no family history with Alzheimer’s or dementia. Only  a small percentage of these trials make it through to fruition. Only 26 of the 105 FDA drug trials addressing dementias are in phase 3.17 None are expected to cure dementia, or to come up with a vaccine.

For instance, take solanezumab, a drug developed by Eli Lilly, one of the largest drug makers in the world. Lilly abandoned the drug in late 2016, after phase 3 trials showed it had no significant impact on cognitive decline versus a placebo.18 The drug had shown promise on mid-stage people living with Alzheimer’s after a similar trial for later stage patients failed. 

The drug’s failure called into question a widely-held belief among doctors and neuroscientists that Alzheimer’s is related to the build up of amyloid plaques in the brain. The failure of solanezumab is more than the failure of a single drug, but potentially negates what had been researchers’ principal line of attack against Alzheimer’s.

In 2016, the U.S. government spent more than $1 billion on Alzheimer’s and dementia research.  Private organizations such as the Alzheimer’s Association raised hundreds of millions more.19 The vast majority of that money is going to medical research at a time when, given Lilly’s setback, it’s unlikely that a cure, or even a treatment, will come in time to treat the Boomers.  Little to no attention is being paid to caregiving research even though major innovations will be needed to care for the Boomers.

The debate over that shortfall grew so acrimonious that in 2015, local Alzheimer’s Association chapters, such as those in New York and Los Angeles, began to secede from the national organization in part because not enough funding was going to local caregiving solutions.20 Those criticisms were heard. “It is in the interest of our nation to ensure people living with Alzheimer’s and other dementias have access to the highest quality person- and family-centered care,” Robert Egge, the Alzheimer’s Association’s chief public policy officer said at the first-ever dementia caregivers summit at the National Institutes of Health in October 2017.21

Neurologists themselves—whose traditional approach had been to focus on narrow questions of biochemistry—are now arguing this case, as in this 2017 article co-authored by a neurologist and a public health expert:22

The authors continue: “Resilience thinking gives us guidance, direction, and ideas about how to comprehensively prevent and treat AD and tackle the AD epidemic.”23

How do we currently care for those living with Alzheimer’s?

Medicare, the principal system of health insurance for the elderly, doesn’t directly cover Alzheimer’s and dementia.24 Only eight percent of Americans have long-term care insurance; most private health insurance, like Medicare, does not cover Alzheimer’s or dementia care. Medicaid, a public health insurance system for the poor, will pay for you to live in a nursing facility. But only 10 percent, or 4.6 million of the 46 million people currently over 65 in America today, qualify for Medicaid.  (An individual’s annual income, in 2017, must be under $16,643 to qualify.) The nursing homes Medicaid pays for focus on traditional nursing.25 This is a problem, because they are set up to attempt to cure diseases. Faced with the incurable, they tend to panic: wandering Alzheimer’s residents are often locked up in psychiatric wards. 

Dementia isn’t something that can be treated and ameliorated. It requires specialized care. Engagement is key to maintaining quality of life for as long as possible. But nursing homes have few activities, and even if they do have activities, those living with dementia often can’t keep up with the non-cognitively challenged. The sense of being left behind compounds isolation and depression and leads to quicker declines.

Costs for paid care are generally astronomical and, like health care in general, are growing much faster than inflation. The average stay at an assisted living facility is 28 months at an average cost of $3,500 a month; meaning those who need full time care pay an average of nearly $100,000, and almost all of that is out of pocket for Alzheimer’s and dementia.26 The growing cost of care is a severe problem for many diseases, such as cancer or heart disease. However, terminal illnesses like cancer generally come with some form of health insurance coverage. But for Alzheimer’s and dementia, there is no help: they simply aren’t covered by Medicare and many other insurance programs.  Though Alzheimer’s requires the most amount of care, people who have it get the least insurance coverage.

The demands are also increasingly untenable for family members and friends who help their loved ones through what policy wonks call “instrumental activities of daily living” (household chores, shopping, preparing meals, providing transportation, arranging for doctor’s appointments, managing finances and legal affairs, and answering the telephone), “personal activities of daily living” (bathing, dressing, grooming and feeding and helping the person walk, use the toilet and manage incontinence), and other sundry, vital duties.

Caregiving needs spiral over time. At first, someone with Alzheimer’s may just forgot the occasional appointment or name. Next, they lose their driver’s license and easily get lost in unfamiliar places. Travel becames difficult. They stop understanding money, and so become easy prey for scammers. Then they need help doing things like cutting their toenails, dressing, and speaking. At the end, they need help with everything from walking to eating. From diagnosis to death usually takes five to seven years. My father’s decline was more protracted; he died 15 years after he was diagnosed. For the first 10 years, he was relatively stable. My mother gave him cues—tell a joke at a certain point, flirt with a waitress at another—but it became increasingly difficult to hide. And her death provoked a steep decline. He was never the same.

Currently Alzheimer’s and related dementia cost the US $259 billion annually.27 This estimate includes the amount families pay for home or assisted-living care,  spending on accommodations for the disease like senior-proofing homes or buying Velcro shoes and pants when laces and buttons become too complex to master, as well as lost wages by caregivers who quite work to care for loved ones. By 2050, that number will more than quadruple to $1.1 trillion, according to Alzheimer’s Association estimates,28 as the cost of home and institutional care spikes along with the number of people with dementia. To care for their loved ones, those who have savings—for their own retirement, for their children’s college funds—will be forced to deplete them. Others will quit their jobs to become full-time givers of care. Those who can’t get by without a job and who haven’t managed to set aside savings for a rainy day will suffer doubly.

The original Affordable Care Act had a long-term care provision in it. Kathleen Sebelius, Obama’s Health and Human Services secretary, cancelled a long-term care program after deeming it unsustainably expensive.29 There is some hope at the local level. New York, Hawaii, and Maine all recently passed some versions of long-term care funds to help their citizens pay for senior care.30 In part, this came from pushes from concerned groups like the Domestic Workers Alliance and in part thanks to legislators with foresight. But the other 47 states have no plans in place. 

Alzheimer’s and dementia are classified as psychiatric disorders by Medicare and Medicaid, even though no doctor would say that they are. First of all, they aren’t treatable; they are not even chronic, in the medical sense of the term as a condition that persists but is manageable. They are degenerative and irreversible. Psychiatrists can’t treat them any more than they can treat smallpox.

The reason dementia is classified this way is not medical: it’s financial. Alzheimer’s and dementia are the single most expensive category of disease for both programs.31 They will almost single-handily bankrupt both Medicare and Medicaid by 2030, if not before (most actuarial estimates don’t take into account families spending down their loved ones assets in order to qualify them for Medicaid). Though Medicare doesn’t directly cover Alzheimer’s and dementia, if you have other diseases as a result, Medicare will cover those. So if you’re in heart failure, have pneumonia, have fallen and broken a hip due to losing your balance because of dementias—all common side effect of the diseases—Medicare will pay for your care. Millions of individuals will manifest these secondary conditions, which will place great strain on Medicare’s finances. If Medicare covered dementia directly, rather than only the secondary systems, overall care would be much better, and likely also cheaper. People with dementia would be less isolated, less depressed, and have a better quality of life.

A Burgeoning Crisis

The problem is bad now, but it’s about to get significantly worse. Baby Boomers—the 76.4 million people born between 1946 and 1964—represent a giant bulge in the system that will require significantly greater amounts of care than their parents or their kids.32 

The U.S. is already short 1.3 million caregivers.33 By the end of President Trump’s first term, that number jumps to nearly 2 million. After that the crisis grows considerably. Unless more immigration is allowed, by 2050 America could be short more than 4 million caregivers. All of which means that the cost of care will rise and the quality of care decline just as the nation needs it most. 

One of the great misunderstandings about Alzheimer’s is that it is hereditary. Only a tiny portion of dementias are thought to be caused by genetics. The vast majority of cases are thought to be caused by unknown environmental factors.34 My father’s family had no history of Alzheimer’s and most of his grandparents and parents and their siblings lived well into their 80’s. 

How do you prevent something when you don’t know what’s causing it? The basics of good health also apply to Alzheimer’s and related dementias. Exercise and a healthy diet have been shown to help.35 So there has been a fitness and healthy-eating push for those entering middle age, when scientists now believe the disease first begins to manifest, with the aim of delaying or maybe even preventing the disease from manifesting.36 Increasingly, organizations like AARP, the Alzheimer’s Association and the World Health Organization, have focused on prevention.37 Such efforts are being shaped by thinking about how to craft a resilient response to dementia:38

But, of course, all of this comes too late for the majority of the Baby Boomers, the youngest of whom are already 53 years old. 

Experiments in Caregiving as a Crisis Looms

In Japan, which has reached an elder demographic crisis ahead of the United States, the government has begun developing robot caregivers.39 On a functional level this has helped with critical staffing shortages: robots can take blood pressure, wake people up, prompt them to take pills or remember to put on their shoes. They can even warn you when they see signs of imbalance. They can be fashioned into furry cats and dogs for company and play your favorite music and movies—once you’ve told it what you like. But they can’t fully take the place of human interaction, nor are they advanced enough yet to do anything complex like changing an adult diaper or help bathing, feeding, and dressing—all of which advanced Alzheimer’s and dementia patients would need. Given what is known about the benefits of social interaction for slowing the cognitive decline that comes with Alzheimer’s, it is unclear if robot caregivers will solve one set of problems only by contributing to others. 

In the past, in many (if not all) societies, multiple generations commonly lived together under one roof. As these multi-generation homes have become less common, care for elders has become an increasing challenge. In Europe, which has some of the oldest populations in the world, the problem is particularly acute. The Dutch and German governments, among others, are experimenting with mixed-aged communities and dementia-only communities.40

Outside Weesp, a suburb of Amsterdam, the Dutch government has created a so-called “dementia village.” The residents of Hogewey, as the village is called, have no idea that they are watched around the clock. The shop vendors and restaurant waiters are actually care staff, and residents are actually locked inside the village boundaries. When one comes to an exit, they’re gently redirected to another activity.

Across the border in Germany, the government is attempting to rebuild the intergenerational model, offering discounting housing to young students and to families in senior communities. Such interventions aim to help rebuild traditional support systems, such as grandparents helping to babysit or cook when the breadwinning generation has to work late. But this model, while successful with seniors without degenerative brain diseases, breaks down when it comes to giving care to those with worsening dementia.

Both those European initiatives were largely government funded, as are many of the Japanese robot schemes. Not only has the United States been slow to focus government funds on elder care solutions outside basic medical research, but many of these solutions are simply too expensive to deploy at scale in the United States, given our size and age demographics. Unfortunately, there are no silver bullets that can fix the crisis.

A Final Classification

In many ways, I was lucky. My dad needed little extra nursing until almost the end of his life. He could put on his Velcro shoes. He was still ambulatory. For years, he couldn’t tell you who was president, what decade it was, my name, or his own. But he could feed himself and go to the bathroom unaided. He was, as he’d called it, a zombie. 

My dad’s pension and my mother’s death benefits helped me pay for private care. Even then, he wiped out all of my parents’ and my own savings. By his final days, his care cost $15,000 a month. He had skin lesions, constant urinary tract infections and ear infections. I only treated anything that made him uncomfortable. By the end, a lot of things made him uncomfortable. In his final months, it took a team of nurses and aides to change him out of his onesie, shower him and put new diapers on him. He needed specialists for shaving, haircuts, dental care, and toe and fingernail clipping. In his final days, he also had lymphoma and was in heart failure—conditions that Medicare would finally have paid to treat for but for which I chose not to treat.

After all, I was trying to kill him, not prolong his suffering, which was by this point all too clear to me. One day I found a woman on his hall throwing up in a trash bin. I asked the staff if she had food poisoning. “No,” they told me: her nausea was just a side effect of her chemotherapy. To me, giving an advanced Alzheimer’s patient cancer treatments seemed like cruel and unusual torture. She had no idea why she was so sick. It prolonged her poor quality of life. So I stuck with the bare minimum. Even that was a huge amount. I was considering a home-equity loan to bridge his care before his death absolved that need.

For those who aren’t lucky enough to afford private care for years, Medicaid has been the answer. Increasingly, families spend down their loved one’s assets to qualify them for Medicaid, making a program intended to help the poor become the bridge solution for Alzheimer’s and dementia care for much of the middle class. 

This may not be the case for long. As the costs of care skyrocket and states struggle to meet Medicaid budgets, Alzheimer’s and dementia patients like my dad may be released—like other “psychiatric” patients—on to the streets. If their families can’t support them, unless they get arrested and put into jail, they may be doomed to homelessness, wandering the streets in their senescence. This spectacle, I imagine, is what my father would have wryly dubbed the zombie apocalypse: the living dead wandering America’s streets as their brains are slowly eaten. If nothing is done to overhaul the system, I fear that my father’s fate will be shared by millions, without the care and protection I was able to provide.