For a long time, doctors didn’t consider dementia to be a cause of death.
Throughout much of the 20th century, dementia was merely a complication—if it was diagnosed at all. Severe, progressive cognitive deterioration was simply part of the normal aging process, the assumption went. Sure, it got in the way of treating actually fatal health complications, like pneumonia or heart failure, but loss of mental faculties doesn’t stop your heart.
Today, doctors know the truth: Dementia kills. A lot. In 2017, the US Centers for Disease Control and Prevention established Alzheimer’s disease—the primary cause of dementia—as the sixth leading cause of death in the country, accounting for over 121,000 yearly fatalities. Although this is the same ranking it held in 2007, back then it killed about 75,000 adults per year. It will likely move up in the rankings as the population over 65 eclipses that of children in the next 15 years.
While the death toll of heart disease and cancer may be more visible—they’re numbers one and two on the list of US killers, respectively—dying of dementia has an outsized impact on the cost of dying in the country. One study from researchers at the Icahn School of Medicine, Dartmouth University, and the University of California Los Angeles found that people who died of dementia needed nearly $300,000 worth of care in their last five years. These costs eclipsed those for people who died of heart disease and cancer by nearly $100,000.
These costs are unsustainable, and have forced clinicians and policy makers to devise ways to ease the financial burden on the health care system and caregivers. Amid a broad field of experiments, one approach stands out for its simplicity: Instead of having doctors intervene only when a person with dementia’s physical health becomes an emergency, some hospitals have made a team available to the person and their caregivers for help with all the factors that impact physical health—like good food, support groups, and even counseling.
Hebrew SeniorLife, a hospital and senior housing system in Boston affiliated with Harvard Medical School, is one of a handful of health care facilities trying out this kind of supportive care model. In 2018, it created a system for people living with dementia and their caregivers, providing them with teams of doctors, nurses, social workers, and even chaplains for spiritual support—if that’s important for families. This place, called the Center for Memory Health, opened fully to the public earlier this year.
The fear with this kind of framework is that it involves a lot more personnel on the hospital side, which could be more expensive overall. That’s why Hebrew SeniorLife, as well as similar newly-established center at the University of Pennsylvania, are testing whether this kind of comprehensive, supportive care for people with dementia is actually better for everyone over time.
So far, it seems that people with dementia and their families are happier and healthier, leaving hospitals with fewer expensive emergency room visits and hospital stays to manage. If these new models can prove this framework works for people with dementia, there’s a chance it could not only be scaled up not just for dementia, but for all health care in general.
There’s already a good reason that could be the case. Physicians—especially oncologists—are already familiar with the concept of person-centered, supportive care. It’s called palliative care.
History of human-centered care
The idea of hospice—the form of palliative care for people decide to forgo life-extending treatments in their final six months—came from the British physician Cicely Saunders. Saunders had been a nurse during World War II, and a social worker for people with terminal cancer after that. Her friend, a surgeon named Norman Barrett, told her, “It’s the doctors who desert the dying, and there’s so much to be learned about pain.” After seeing firsthand the grisly condition many of her patients endured during their final days, she decided to find a way to alleviate suffering.
Saunders began experimenting with the idea of treating patients for pain in 1948—although hers was hardly an official operation. As a nurse, she routinely treated patients’ pain with small, regular doses of morphine. No longer in as much pain, she noticed that patients were calmer and generally happier—which was often better for their physical health anyway.
Today, palliative care in the form of hospice continues to be employed in the final months of patients’ lives, especially those with cancer. Palliative care, though can be for anyone who has a long-term, chronic illness, like kidney failure or lung disease. “It’s specialized medical care for anyone living with a serious illness, regardless of prognosis or diagnosis, or even ability to cure,” says Katherine Courtright, a critical care and palliative care physician at the University of Pennsylvania.
And because clinicians have gotten better at diagnosing dementia earlier, it is becoming more of a long-term, chronic condition, too. Some people can live for multiple decades beyond their diagnosis. Palliative care can help these people and their families enjoy better quality of life by managing symptoms and focusing on individual goals—even after death, through grief counseling for surviving caregivers (pdf).
But it’s not yet standard practice—in part because of the same challenges that Saunders faced when she was originating the practice of hospice care for her patients.
Saunders knew that in order to get support from larger medical systems, she would need evidence that hospice was actually benefiting these patients. So, after going back to medical school and becoming a physician, she did what any good scientist would do and organized a study. For the purposes of eliminating variables, Saunders focused her work specifically on terminal cancer patients.
Over the course of seven years, she and her team interviewed 1,100 patients that came through 45 beds in the newly-established St. Joseph’s Hospice in England, which was created in 1958. They said things like, “It was all pain, but now it’s gone and I’m free.”
The collection of these positive testimonies made Saunders’ point: Alleviating suffering, even if it wasn’t life-saving, was still valuable medicine that helped people. But while there was mounting evidence that hospice worked for dying cancer patients, there wasn’t much support for its efficacy in other diseases. This research lagged, which is why it took until 1990 for the World Health Organization to officially declare that palliative care could be extended beyond people who had end-stage cancer to those who were dying of AIDS-related illnesses.
At the moment, the WHO maintains (pdf) that the majority of people who need palliative care are people living with cardiovascular disease or cancer. But there’s one big reason why palliative care could be especially effective for people living with dementia: It can be modified over the course of the condition.
Paying for palliative care
Dementia has many distinct stages. In the early stages of the disease, a person with dementia may still have most of their cognition intact and can enjoy a lot of their typical activities. In these cases, people would want treatment for other conditions like pneumonia or urinary tract infections—typical primary care doctor stuff. As dementia progresses, though, they may want fewer interventions or medications, and may even elect to move to hospice care, or home hospice with the help of visiting nurses. Finally, they’ll want to think through when they may want to stop intervening with life-extending therapies, for which they might want the counsel of a chaplain.
Palliative care can offer all these types of care over the course of dementia’s progression. And often, it makes things easier on caregivers, too.
The social workers on palliative care teams can help caregivers manage some of the non-medical aspects of care, like help finding the right meal delivery services or working through the complexities of Medicare, America’s free federal insurance for adults over 65, and Medicaid, the state-run health care for low-income families. That can ease the stress of caring for someone with dementia, which can be so taxing it harms the health of the caregiver. About one third of dementia costs are related to the health of caregivers and other family members, Mary Mittelman, a physician and psychiatrist at New York University, explained on the podcast Get Palliative Care.
Hebrew SeniorLife has a 24/7 hotline that caregivers can call with any questions they have about caring for their loved one—like how to deal with the major sleep disturbances common in adults with dementia, says Mary Moscato, the president of Hebrew SeniorLife’s Health Care Services and Hebrew Rehabilitation Center. They’ll consider trips to the emergency room, being so tired themselves, but the clinician on the other end of the phone can offer guidance on how to calm their loved one, and how to get them sleeping normal hours again. People with dementia and caregivers can end up feeling physically better and happier, and avoid these trips.
Hospitals like when patients elect palliative care, too. Emergency rooms and hospital stays are hands-down the most expensive parts of dementia care for medical providers, too. Medicare can only bill for the physicians themselves, meaning hospitals with palliative care teams eat the cost of nurse practitioners, social workers, and spiritual guides like chaplains. But hospitals are usually happy to do so.
“[In total,] it’s a $500,000 cost to us every year and it’s a high-valued investment,” says Moscato. “We know that patients aren’t going to be readmitted to the hospital.” When asked for a specific estimate of how many people received palliative care, a spokesperson for the hospital couldn’t say, because people are moving through different kinds of care constantly; however, in total the hospital serves 3,000 people.
In a few years, hospitals like Hebrew SeniorLife and the University of Pennsylvania hope to demonstrate that palliative care for dementia is a better option for both care recipients and hospitals. Eventually, even more hospitals could adopt their person-centered palliative care models—not just for dementia, but for the US health care system overall.
All strategies are worth considering as a larger proportion of the population reaches old age and fertility rate falls. “Our societies aren’t structured to deal with [demographic] changes—financially or socially,” says William Haseltine, a former Harvard biologist and now the head of ACCESS Health International, a nonprofit health care think tank headquartered in New York.
Haseltine has written multiple books on supporting older societies. “Where health care fails specifically for the elderly is integration of social and health care,” he says. In the US, the two systems just don’t coexist. There are communities, where people live, and there are hospitals, where they go to be sick. Without making certain aspects of health care available in communities as social care, we’re not going to be able to pay for the growing health needs of our aging population, including people with dementia, he argues.
The problem is with the way our health care is structured. Currently, most of it falls under a fee-for-service model, meaning that insurance pays for doctors to perform a procedure or meet a person for an appointment, regardless of what happens to their health. Switching over to value-based care, where the outcome matters instead and mistakes are penalized, would create an incentive to keep people healthy. “Those two pressures combined are going to change the system from hospital-centric to outpatient and community care,” says Haseltine.
“The holy grail is to try to make informed and patient-centered decisions, with patient preferences aligned with best evidence,” says Susan Mitchell, a geriatrician at Harvard Medical School. Ideally, as more programs show the benefits of palliative care for dementia, those same practices can be applied to the health needs of all kinds of patients.
Correction Dec. 9: This story has been updated to reflect Mary Moscato’s title at Hebrew SeniorLife.