Instead, the much-desired option of dying at home is proving to be stressful and draining to the extreme for families, and, when it comes to the dreaded loss of control involved with Alzheimer’s disease and dementia, drug therapies seem elusive in a concerning and crushing way.
Older workers’ health is becoming a startling concern, too, for many more employers as seniors stay on the job longer than they have before — leading to more workplace injuries and deaths.
Dying at home: a fond wish, but a harsh reality
As Haider J. Warraich, a Boston cardiologist, reported in the Washington Post on his recent research about Americans and a long-sought end-of-life aspiration:
“For the first time since the early part of the 20th century, more Americans are dying at home than in the hospital or a nursing home. This finding, included in a recent study by me and co-author Sarah Cross, is encouraging because the vast majority of Americans say they prefer to die at home. So, this reflects that many more people are being able to achieve that goal. But as more people die at home, it also means that much more responsibility falls on the shoulders of patients and their caregivers. Caregiver burden is a growing problem in America. As a doctor tending patients with heart failure, I am keenly aware of how hard managing care can be for both patients and family members.”
Separately, Nathan Gray, an assistant professor of medicine and palliative care at Duke University School of Medicine, and the Los Angeles Times Opinion editors deserve credit for providing a graphic, simple, and direct explanation of the big challenges patients and their loved ones confront when individuals die at home.
As Gray — also an artist — points out in powerful fashion:
“When I started making house calls for seriously ill patients after their hospital discharge, I had no idea how much time I would spend wiping tears on the porch … While it might seem like more people spending their last days at home would be better for everyone, seeing the brutal realities of caring for a sick loved one at home has sobered my enthusiasm for sending people home to die.”
Families, already staggered by a loved one’s illness, may want to offer sick patients a final, generous embrace at the end-of-life. But they fail to reckon with the 24/7 caregiving responsibilities they take on. They know that the costs of institutional care can be formidable, without grasping in full that it pays for an army of highly trained and skilled staff — doctors, nurses, and aides — who tend to gravely ill patients around the clock, including handling messy, invasive, and sometimes painful procedures.
“Caring for someone with serious illness [at home, however] is a starkly foreign practice in a society where a person’s last days have long bee spent in institutional medical settings,” Gray observed.
As Warraich noted:
“Taking care of an ailing loved one can be exhausting physically and emotionally, and frequently caregivers lose sight of themselves. My study co-author used to work as a social worker and has seen many families struggle with managing a loved one at home.”
Gray’s graphical description highlights words and phrases he commonly encounters with family caregivers: Exhaustion. Doubt. Inadequacy. Frightening. Hardest thing I’ve ever done.
Families, when caring for a dying loved one, may not have considered if they can get an expensive, hospital-style bed to help ease the care of a sick patient and whether it will fit in their homes, the doctors write. They don’t think through if they have a main floor bedroom with convenient bathroom access. How long might they need to stay at home and likely out of work with their loved one, and who will spell them so they can catch their breath and tend to outside chores like shopping? Are they prepared for scary and shocking medical incidents and the “natural decay” that occurs with the dying?
He and Warraich both note that help is available under Medicaid and with hospice programs. But as Gray summarizes the shortfalls of available resources:
“For those in their last months, home hospice provides expertise, equipment, and help with symptoms such as pain or shortness of breath, but hospice only visits a handful of times each week. The remainder of 24/7 caregiving falls squarely on the shoulders of family members. [And] while a night in the hospital costs around $2,000, home hospice receives a fixed rate of less than $200 per day to cover medications, equipment, nurse visits, and all other care they provide. For many situations, this may be sufficient, but for others, this one-size-fits-all approach is woefully inadequate.”
The doctors both agree that much more support is needed for caregivers. Gray, in his pithy presentation, also still hits hard at a harsh reality of the U.S. health care system: It does not have limitless resources and it is replete with tough choices and trade-offs. If Americans really want to die at home and this is a costly ordeal, does it also make sense to ask patients to pay tens of thousands of dollars for costly drugs that might prolong a life for a few weeks more?
Back to the drawing board on Alzheimer’s drugs?
As the nation rapidly grays, a growing number of older Americans are becoming anxious and taking inconclusive tests or following unproven regimens all in hopes of avoiding what they consider to be a real and frightening affliction of old age: Alzheimer’s and dementia.
This is what Andrea Kline, 71, a retired nurse in South Florida, told Judith Graham, a columnist for the independent, nonpartisan Kaiser Health News service:
“I worry about dementia incessantly: Every little thing that goes wrong, I’m convinced it’s the beginning.”
Graham, who has a family history herself of the chronic conditions, reported that Kline’s fears are not without cause. Kline’s mother, as well as her aunt and uncle, had Alzheimer’s disease. But as Graham also emphasized:
“Because Ms. Kline has had multiple family members with Alzheimer’s, she’s more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesn’t mean this condition lies in her future. A risk is just that: It’s not a guarantee.”
Still, the news has been distressing about the failure of yet another much-watched study on drugs to combat Alzheimer’s and dementia. As Gina Kolata of the New York Times reported of this small-scale but intensive research:
“The study aimed to show that Alzheimer’s disease could be stopped if treatment began before symptoms emerged. The participants were the best candidates that scientists could find: still healthy, but with a rare genetic mutation that guaranteed they would develop dementia. For five years, on average, the volunteers received monthly infusions or injections of one of two experimental drugs, along with annual blood tests, brain scans, spinal taps and cognitive tests. Now, the verdict is in: The drugs did nothing to slow or stop cognitive decline in these subjects, dashing the hopes of scientists.”
The results of this international study, nicknamed DIAN-TU, have raised yet more troubling questions about the fundamental hypothesis on which Big Pharma has based a long, costly campaign to develop a way to deal with dementia and Alzheimer’s, its most common condition. As the nonprofit, independent RAND Corporation has reported, based on studies by its researchers:
“[D]ementia already takes a higher economic toll than heart disease or cancer: at least $159 billion a year, and possibly as much as $215 billion. Those costs could more than double by 2040 …and the heaviest burden will fall on family caregivers …Nearly 15% of Americans older than 70—some 3.8 million people—already have dementia … That number will swell to 9.1 million people by 2040 … more than the current population of New York City. At that point, the cost to care for them could exceed half a trillion dollars a year.”
Big Pharma’s has focused on a key component of dementia’s effects in the brain as a path to battle the disease, Kolata reported, noting that experimental drugs have zeroed in on “overproduction of amyloid, which accumulates in hard plaques in the brain … Amyloid accumulates in the brain and then a tangled, spaghetti-like protein, tau, appears and neurons die.” But as she noted:
“[C]ompanies and academic researchers must confront a troubling question: Is it time to move past an emphasis on developing anti-amyloid drugs for Alzheimer’s disease? Studies of anti-amyloid drugs in older people are still underway. Scientists are testing the drugs in another group similar to that in DIAN-TU: a large family in Colombia also carrying a gene mutation that leads to early Alzheimer’s. But the studies of anti-amyloid drugs completed so far have repeatedly failed. Companies have spent billions of dollars on the drugs. Some, like Pfizer, have gotten out of the race altogether.”
Sharon Bagley reported in a detailed investigation for Stat, the medical and science news site, on the dire effects of drug researchers’ decision to home in on a single theory for Alzheimer’s treatment:
“Research focused on amyloid, and the development and testing of experimental drugs targeting it, have sucked up billions of dollars in government, foundation, and pharma funding with nothing to show for it. While targeting amyloid may or may not be necessary to treat Alzheimer’s, it is not sufficient, and the additional steps almost certainly include those that were ignored, even censored.”
While the medical establishment and Big Pharma regroup in their assault on dementia and Alzheimer’s, likely including further amyloid research, Graham noted that worried seniors are taking costly tests that may not provide them with conclusive data about their likelihood of being afflicted with the conditions. They’re spending time and resources to learn as much as they can about cognitive diseases, and they’re experimenting with regimens that may benefit their overall health as well as potentially slow or prevent dementia or Alzheimer’s.
Graham noted that her doctors have urged her to get a neuropsychological work-up to provide a baseline for them to see if she is showing signs of cognitive disorders. But she reported:
“Several years ago, when I was grieving my sister’s death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea. I knew then I wouldn’t take him up on the offer. If and when my time with dementia comes, I’ll have to deal with it. Until then, I’d rather not know.”
Seniors and death and injury on the job
It’s a tiny uptick that is a sign of bigger concerns. Justin Fox of the Bloomberg News Service dug into Bureau of Labor statistics on deaths and injuries on the job, finding what the 56-year-old reporter calls a “creepy” and disconcerting data point:
“More people older than 55 are working, and people over 55 are more likely to die on the job than younger workers.”
As Fox noted of older Americans’ participation in the workforce:
“[They are] likelier to be working now for a variety of reasons. Some seem entirely positive — despite the recent stall in life expectancy, Americans are living significantly longer than they did a few decades ago, and once-common mandatory-retirement rules have largely disappeared since Congress banned most of them in 1986. A more complicated issue is the changing nature of retirement income: Some Americans work into their 70s because they have no retirement savings, while others have savings but work longer because the defined-contribution plans that now predominate reward delayed retirement in ways that most traditional pensions do not. In any case, as the share of older workers has grown, the share of workplace deaths that they account for has grown, too.”
When Fox, relying on academic researchers’ investigations, digs into the small but notable rise in older workers’ job-related injuries and deaths, he finds interesting and distressing reasons why:
“Being older obviously does make one more prone to keel over, but the occupational fatality statistics don’t include on-the-job deaths due to natural causes. So, what explains the higher death rates of older workers? In an analysis published last month .. BLS economists Sean M. Smith and Stephen M. Pegula sliced and diced the numbers in several ways in an attempt to answer that question. (To get statistically meaningful results, they generally focused on the entire 55-plus age group, not the smaller but much-higher-risk group of workers 65 and older, and combined data for a number of years.) One thing that they found was that those 55 and older were more likely than younger workers to die of lingering injuries days, weeks, months or even years after a workplace incident. Older people are more fragile than younger ones, so they have more trouble recovering from workplace injuries than their younger peers and are more likely to suffer certain injuries (hip fractures, for example). When it comes kinds of accidents, the biggest cause of workplace fatalities for both older and younger workers is roadway incidents involving motorized land vehicles, aka traffic accidents …”
Fox finds that farmers stay on the job longer than most others, and, as a result, they suffer a high share of older workers’ road-related deaths when their tractors or pickups jack-knife or flip.
In my practice, I see not only the harms that patients suffer while seeking medical services, but also the damage that can be inflicted on them by car, truck, and motorcycle wrecks. I also see patients struggles to afford and access safe, efficient, and excellent medical care. This has become an ordeal due to the skyrocketing cost, complexity, and uncertainty of therapies and prescription medications, too many of which turn out to be dangerous drugs.
Demographers have warned that among the baby boom generation, one of the largest such population groups in U.S. history, on this day and for every day for the next 19 years, 10,000 individuals will reach the traditional retirement age of 65. By 2060, a quarter or so of U.S. residents will be older than 65, and life expectancy will reach an all-time high of 85 years, U.S. Census Bureau forecasts say.
Yes, older adults can take every step possible to stay healthy and out of the U.S. health care system, with its significant problems with medical error, preventable hospital acquired illnesses and deaths, and misdiagnoses. Yes, they can strive to protect their cognitive health. They can take steps to lower their risk and to help drive down an unacceptably high road toll. They can make careful end-of-life preparations.
But politicians and policy-makers, alas, continue to stick their head in the sand about the burgeoning needs of older Americans, whether in dying at home, dementia and Alzheimer’s long-term care, or in supporting programs like Medicaid, Medicare, and Social Security, so elder workers can stay on the job only if they wish and not because they are struggling economically so that they must.
We’ve got a lot of work to do to deal with seniors’ needs because the giant demand is on us now.