If 75 is the new 40, what's 85?

You've probably heard repeatedly that 70 is the new 40--and perhaps also that 80 is the new 65.  If that's true, then quality of life for people who used to be considered old should be much better than previously. It turns out that the perception that things are better for the elderly is true—but only sort of.

A recent study by the well-known health economist David Cutler and his colleagues carefully analyzes data from the Medicare Current Beneficiary Survey, a rich source of information about the health and welfare of all 47 million Americans enrolled in Medicare. After painstaking study, the authors conclude that the “compression of morbidity” is for real: Americans truly have more years of life without disability today than they did 20 years ago. Someone who turned 65 in 1991 could anticipate living another 17.5 years, of which exactly half were spent with disability. Someone who turned 65 in 2003, by contrast, could look forward to living 18.2 years, of which fully 10.4 years would be disability-free, leaving 7.8 years of disability.

But all these averages--the average life expectancy at 65, average number of disability-free years--hide an important truth. What a given person will actually experience, just how much impairment he has in his final months or years, depends on what medical conditions he has. In fact, for some people, the experience of old age has gotten a great deal better; for others, it has gotten far, far worse.

Roughly speaking, people follow one of three possible paths in the last year or two of life and a similar pattern may well describe what happens in the last 5 or more years of life. One group of people die quite quickly and do well until the very end--these include people who have the most common forms of cancer and those who die very suddenly, perhaps from an accident or a heart arrhythmia. People in this group tend to die at a relatively young age and account for about 20% of all people who die. A second group of people have chronic organ system failure, for example congestive heart failure or chronic obstructive pulmonary disease, and have a course of slow decline, punctuated by periods of acute worsening followed by improvement. They do pretty well until the final 6-12 months of life and account for another 25% of the population.  A third group of people have poor long term function and have a slow decline, either because of dementia or because of that nebulous condition known as frailty in which multiple interacting medical problems interfere with daily activities. These include many of the oldest old and constitute 40% of deaths. The percentages do not add up to 100 because the remaining 15% cannot be readily classified as fitting into any of the 3 main groups.

What this means is that if you are in Group Three, what you will experience is not a "compression of morbidity," but a long, drawn-out period of decline. And the reality is that this third group, which is comprised largely of people with dementia, is going to grow as the other groups shrink.

It's already happening. Between 1997 and 2007, the death rate from heart disease fell 25%. Many people with heart disease are in that middle group who have pretty good functioning until their disease gets so severe that it gets in the way of what they want to do, though some have other diseases as well and are in the third, frail, group. So improvements in the prevention and treatment of heart disease--interventions such as exercise, diet, medications, and pacemakers--have meant fewer people dying of heart problems. But in the same ten year period, the death rate from Alzheimer's Disease increased by 50%. And all those people are in Group Three, those with the slow fade. 

So are things better or worse for older people? Maybe that's the wrong question. Maybe the answer is, it depends. 

Dementia Redux

A few months ago I wrote about my father’s experience in the nursing home where he lives, commenting on the difficulty of implementing  the “culture change movement” that is supposed to promote quality of life for residents. Many readers responded that they, too, had been disappointed with attempts by nursing homes to improve care for people with dementia. Since then, I've been keeping my eyes peeled for studies that examine what approaches to nursing home care actually make a difference for residents.

This month I found a an article in a major geriatrics journal that asked a related question: what characteristics of residential facilities are associated with better health outcomes and better psychosocial outcomes for residents with dementia? The authors looked at organizational characteristics (for-profit vs non-profit, urban vs rural, special care units vs no special care units, nursing homes vs assisted living, culture change vs conventional), structures of care (staffing level, proportion of private rooms, staff expertise), and processes of care (activity programs, family involvement, resident-centered care). What was shocking about this report is that although the investigators reviewed 6209 articles written between 1990 and 2012, they only found 14 that met even the rudimentary scientific standards needed to be included in their analysis (for example, a study had to have enough cases to allow the authors to draw meaningful conclusions and it needed to compare two different strategies used in otherwise similar facilities so the investigators could figure out if one strategy was better than the other). Out of the 14 studies the authors identified, 10 reported specifically on psychosocial outcomes, the issues I am most concerned. These 10 studies showed that “person-centered care,” which is at the heart of the culture change movement, did lead to slight improvement in well-being. Overall, however, quality of life was pretty much the same (and not very high) in all the facilities studied, regardless of whether there were private rooms or special activities and whether or not the nursing home was for-profit.

In most nursing homes, unfortunately, the relevant question is far more basic than whether pets or plants or "therapeutic touch" can make a difference for residents. I learned this week from an article in the Boston Globe that my own state of Massachusetts is hoping for the first time to require residential facilities with dementia “special care units” to actually give specialized training to their staff. Right now, dementia care is principally provided by certified nursing assistants (CNA) and, to a lesser extent, by registered nurses. To become a CNA in Massachusetts, you have to take 75 hours of coursework and have 100 hours of hands-on training in subjects such as giving a bath and taking a blood pressure. A CNA training program, which typically last 2-6 months, does not necessarily include much about dementia. Once a CNA is hired in a nursing home, he or she is assumed to have adequate expertise to care for all residents and, until now, no additional training is mandated.

A total of about 1.7 million people live in nursing homes in the US, of whom 70% have dementia. Another 1.2 million people live in some other form of residential care facility such as assisted living, of whom 42% have dementia. So it is reassuring that Massachusetts is likely to join the 16 other states that mandate some kind of training for direct care workers in facilities that claim to provide specialized dementia care. It's frightening that this new regulation will mean that workers will receive a mere 8 hours of training initially and 4 additional hours each year--acquiring real expertise in dementia care would surely require at least two or three times as many hours. It's also distressing that nursing home administrators immediately responded to the proposed regulations by protesting that they cannot possibly afford to spend so much time teaching their staff such essentials as gentleness, patience, and tolerance of repetition or techniques for handling such common problems as paranoia, agitation, and wandering.

We have come a long way since the appearance of great muckraking books like Tender Loving Greed exposed the nursing home industry nearly 30 years ago. We still have a long way to go.

Location, Location, Location

It's true: how much Medicare spends on you if you are old and sick depends on where you live. Researchers at the Dartmouth Institute for Health Policy and Clinical Practice have been saying this for years, but the skeptics insisted that maybe the people who had more tests and treatments were sicker, and maybe people just happened to be sicker in certain parts of the country than in others. Or maybe patients in some areas insisted on more aggressive treatment than patients elsewhere. Now, a new study carried out by the independent, well-respected Institute of Medicine suggests that the Dartmouth researchers were right all along. 

Not only are there parts of the country where both prices and “resource utilization,” or the intensity of tests and treatments, are higher than others, not only are these differences very large, but they have remained unchanged for the past 20 years. What’s going on here?

The new study finds that some of the geographic variation is related to the patients’ health status—people really are sicker in certain places than in others. But most of the difference between the high cost, high intensity regions and low spending regions is driven by the utilization of “post-acute services,” or care in places such as rehab centers after hospitalization. If post-acute care were the same everywhere, the variation in Medicare spending would fall by 73%. The rest of the difference between the high spending regions and the low spending areas is due to acute care, ie hospitalization. If hospitalization rates and hospital care were the same everywhere, the variation in Medicare spending would fall by 27%.

The authors of the IOM study suggest that the fix to the variation problem is to promote the “clinical and financial integration of health care delivery systems.” In other words, if hospitals and rehab centers and primary care doctors all shared responsibility for taking care of patients, if they had to share a fixed payment from Medicare, or so the argument goes, then each sector would behave efficiently so as to avoid penalizing both themselves and everyone else. This is the arrangement in the Accountable Care Organization model, currently being tested by Medicare in 32 sites across the country. 

Preliminary data suggest that the ACO approach may work to make the member organizations (hospitals, physician practices, etc.) more efficient. It may bring down costs. But concluding that ACOs are the way to control cost while maximizing quality, along with other forms of integration such as the “patient-centered medical homes” and “bundled payments,” begs the question of why there is geographic variation in the intensity of both acute care and post-acute care. If lack of integration is the culprit, is there less integration in some parts of the country than in others? Are rehab centers and hospitals doing more because they can get away with it, or for some other reasons?

Location clearly matters. But before you decide where to live based on your preference for a lot of medical interventions or few medical interventions (with little evidence of any consequence for your health either way), and before Medicare goes ahead and "incentivizes" integration within health care systems, we need some more answers.

The Three Questions

The NY Times Magazine recently featured a thought-provoking article about choosing to die. Writing with compassion and sensitivity, Robin Marantz Henig describes the 5-year saga of Brooke Hopkins, who at 66 had a terrible bicycle accident that left him paralyzed and partially dependent on a ventilator for breathing. He had written a living will indicating under what circumstances he would not want life-sustaining treatment. He also happened to be married to Peggy Battin, a philosophy professor well-known for her writing about the right to die. The article focuses on how Hopkins has been able to find meaning in life despite his disability and how his goals and preferences for care shifted dramatically, sometimes day to day. It rightly draws attention to the importance of deciding how to live, not just how to die.

I would go further. Declining a medical intervention usually has nothing to do with “deciding to die.” When patients decide to forgo a particular treatment, it’s rarely because they are in a “state worse than death.” The vast majority of people facing choices about medical care want to live—but that doesn’t mean they would undergo any and all possible medical treatments. Rather, and this is all too seldom discussed, we need to ask 3 questions when we make decisions about medical care. How much pain and suffering will I have with the proposed treatment? How likely is it to succeed? And in the best case, where it succeeds, how much longer can I expect to live? 

The extremes are pretty easy. If the treatment is totally innocuous, most people would want it, even if it isn't very likely to work and even if the patient is very elderly. If it's painful (and by painful I also mean that it induces confusion or requires a long period of rehabilitation or results in dependency) and probably won't work anyway and the patient is at the very end of life, most people wouldn't want it. The more difficult situations are in between. Suppose it's painful but has a good chance of success, many though not all people would want it. Suppose it’s painful and the odds of success are small but the patient is 25 years old, many people would opt for the treatment.  Not everyone will make the same choice: some people are more risk averse than others; people do not share the same values. But we need to start by asking the same basic questions.

Thinking Clearly About Thinking Poorly

Every Sunday morning, I do the NY Times crossword puzzle. I also do the KenKen puzzles in the daily Times, and sometimes I throw in a Sudoku for good measure. But I don’t do the puzzles to keep my mind sharp— I do puzzles because I enjoy them. A recent consensus conference convened by the National Institutes of Health found that there is no persuasive evidence that any intervention, whether mind exercises or physical exercise or anything else, can prevent dementia. A pair of new studies in the British journal, the Lancet, however, argue that the prevalence of dementia in two western European countries has fallen substantially.  What are we to make of these findings and what are the implications for each of us?

The British study measured the frequency of dementia in people over age 65 in 3 geographic areas of England in 1989-1994 and then repeated the measurements using the same questions in 2008-2011. What they found is that the prevalence of dementia in people over 65 fell from 8.3% to 6.5%—a 25% drop.

The Danish study examined both the rate of cognitive and of physical functioning in the oldest old, those 90 and up. First they studied a group of 93-year-olds, all of whom were born in 1905. Then they studied a group of 95-year-olds, all born in 1915. Despite the fact that the second group were 2 years older, 33% of them had normal scores on mental status testing, compared to 13% of the earlier cohort. The second group also did better in terms of their daily functioning (walking, bathing, feeding themselves) although formal measures of physical performance (strength, walking speeding) were the same for both groups.

A fall in the rate of dementia is certainly very encouraging. An editorial accompanying the British study concluded that lifestyle changes, such as better diet, more exercise, and less smoking, were most likely to account for the change. An editorial accompanying the Danish study concluded that changes in nutrition, exercise, and smoking behavior were very unlikely to be the explanation and suggested instead that intellectual stimulation was probably responsible for the improvement. How can they both be right?

It’s conceivable that there are different explanations for falling dementia rates in the general elderly population and in nonagenarians. It’s possible that Danes are different from Britons. More plausibly, we just don’t know what accounts for the observed decline in dementia, but it is probably related to multiple factors and not to one unique factor.

Probably the greatest medical triumph of all time is the germ theory of disease. The discovery that particular microorganisms cause specific diseases led to the discovery of antibiotics that kill bacteria—and cure disease. Penicillin and the many antibiotics discovered since have been a terrific boon to humankind, leading to the treatment of pneumonia, tuberculosis, typhoid fever, and countless other scourges. But in geriatrics, finding a single fix for the many complex conditions that afflict older people has proven far more challenging. One of the most important insights of the last few decades has been that preventing falls or confusion or other “geriatric syndromes” requires a multi-pronged approach. Whenever we look for the One Big Intervention that will do the job, we fail. Older people fall less often if their cataracts are removed and they wear shoes with good supports and they stop medications that make them faint or dizzy. Older people get confused less often while hospitalized if they don’t take sleeping pills and they talk about current events.

Today, the best strategy for staving off dementia is eating well and exercising and remaining socially engaged and doing crossword puzzles. Even before the discovery of antibiotics, improvements in sanitation and nutrition led to a steep decline in the prevalence of infectious diseases. Maybe it’s time to adopt an analogous strategy with dementia, living a generally healthier life and hoping it will somehow keep our minds functioning. We should recognize, however, that this approach will at best have a modest impact on the overall prevalence of the disease. After all, it’s great that only 33% of 95-year old Danes have normal cognition but that means 67% don’t have normal cognition. It’s terrific that the rate of dementia has fallen 25% among British people over 65, but 6.5% of them still have the diagnosis. Maybe one day we will find the magic bullet that can prevent dementia, but that day is a long way off.

Is Patient-Centered Care an Oxymoron?

Patient-centered care is the new buzzword in medical and health policy circles today. Choosing which of several possible treatments to use is supposed to be based on "shared decision-making." Treating chronic disease ought to involve patients in "self-management." Patients should be cared for in a "medical home." All these innovations are designed to put the patient at the center of the health care system. They are associated with better quality and lower costs than the more traditional physician-centered, paternalistic approach to care. 

But they leave frail older people out in the cold.

Patient-centered care can work for older people with multiple chronic conditions or advanced illness only if it incorporates their caregivers. Between one-third and one-half of all people over age 85 have some degree of dementia limiting their ability for self-care. Even people whose minds work fine when they are well often develop delirium, or acute confusion, when they get sick. And those who are cognitively intact often have trouble with vision or mobility or hearing, which gets in the way of their taking full control of their own health care. If physicians and health care institutions are serious about bringing the benefits of patient-centered care to the oldest and most vulnerable patients, they must involve caregivers in all phases of medical care. That's what I argued in an essay in JAMA this week.

Caregivers need to understand the patient's underlying health status--not just how long they are likely to live, although that is important, but also what bumps they are likely to encounter along the way. They need to participate in the critically important process of defining and prioritizing the patient's goals of care because those goals will shape the approach to treatment that is right for the patient. Caregivers need to help design the plan of care--figuring how best to translate the goals into practice when the patient becomes acutely ill, as all frail people will.

Currently, over 80 million Americans serve as caregivers for adults. Many of them are responsible for pretty complicated medical tasks, whether administering multiple medications (sometimes as many as 15 or 20 a day, all of which come with potential side effects) or changing dressings on open wounds or operating technological equipment such as dialysis machines or feeding tubes. Only when physicians actively integrate caregivers into the treatment of frail older patients will those patients be able to enjoy the fruits of patient-centered care. 

Doctors need to make the radical switch from individualistic, autonomy-driven care to family-centered care. Changing deeply ingrained behavior is hard. But physicians need to understand that they, along with patients, stand to gain from the change. Patient-centered care is essential to achieving the outcomes that are good for patients--and on which doctors will increasingly be judged.

The One-Hoss Shay

Oliver Sacks turned 80 last week. The noted neurologist and raconteur wrote an inspiring piece in the NY Times in honor of the occasion, in which he says he looks forward to being an octogenarian. He recognizes that he has a fresh perspective by virtue of his experience—he is what used to be called a “wise old man,” before such a phrase became politically incorrect. His hope is to have a few more years doing what he says matters most, loving and working, and then to die “in harness,” or “fully engaged” with life. In other words, he is hoping to be like the remarkable buggy that was constructed so well that it didn’t fall apart for 100 years, immortalized by Oliver Wendell Holmes (who like Sacks was a physician and a writer) in 1900:

      Have you heard of the wonderful one-hoss shay,
      That was built in such a logical way
      It ran a hundred years to a day,
      And then all of a sudden it—ah, but stay,
      I’ll tell you what happened without delay…

And many verses and decades later:

      There are traces of age in the one-hoss shay,
      A general flavor of mild decay,
      But nothing local, as one may say.

But then, after 100 years:

      What do you think the parson found,
      When he got up and stared around?
      The poor old chaise in a heap or mound,
      As if it had been to the mill and ground!
      You see, of course, if you’re not a dunce,
      How it went to pieces all at once,
      All at once, and nothing first,
      Just as bubbles do when they burst.

Of course, when the buggy fell apart, it did so in entirety—taking the deacon who was riding it down as well. Given no warning that the buggy was about to collapse, the deacon could not protect himself. But for people, living long and well and to the fullest, and then dying all at once, as Oliver Sacks hopes his fate will be, seems like the best alternative. The question is, how often does that wish come true?

Over 30 years ago, James Fries predicted that we would see the “compression of morbidity,” or a progressive shortening of the time between the development of age-related disability and death. In a recent review, Fries offered evidence that this is exactly what has happened, with modest increases in life expectancy between 1982 and the present along with a significant decline in rates of disability. Others disagree, arguing that people are living longer than they used to and are spending those added years frail and debilitated. 

The crucial issue is what we can anticipate today when we reach 80, not whether or by how much matters have improved. And the current reality, according to Medicare data, is that 54% of people over 85 have at least 4 chronic diseases and 25% have more than 6. Not only do the oldest individuals have many diseases, but these illnesses translate into problems walking and dressing and bathing: 56% of people over 80 report a severe disability. 

Chronic illness and disability are thus the norm for octogenarians, at least by the time they reach 85. Remaining vigorous and then dying quickly is simply not the reality for many older individuals. This does not mean that they cannot live life to the fullest, but it does mean that for the majority of octogenarians to stay engaged with life, we need to find ways to enable them to derive meaning from their existence. We have to take steps to assure that they can maintain and nourish relationships with others, whether by enhancing transportation to enable them to overcome difficulties with mobility or by teaching computer skills to allow them to communicate remotely. We have to facilitate their desire to contribute to society, whether through part time, flexible employment opportunities or by creating oral history projects in which they can participate. 

Designing medical interventions that allow us to remain robust into old age and then die of sudden death may be as flawed a quest as creating Holmes's perfect buggy. It may be as replete with unintended consequences as striving for immortality (more about the perils of aiming for immortality in a later post). Our challenge as a society is to find ways to support older people in their quest for meaning--even if they are not built like the one-hoss shay. 

    

Honor Thy Mother and Father

The Japanese have the right idea. Their Prime Minister recently announced his government would invest in the development of “nursing care robots” that help older people with everyday tasks. With just over 20% of its people over age 65, Japan has the largest proportion of elders of any country in the world--the corresponding number for the US is 12%, but we can expect to reach the 20% level by 2030. The Japanese also live longer than other peoples: at birth, life expectancy is 84 years (compared to 79 in the US) and at age 60, life expectancy is 26 years (compared to 23 in the US). But in Japan, the “old age dependency ratio,” or the number of older people as a share of those of working age, is a stunning 39, compared to 21 in the US (for anyone wondering how these numbers could possibly be 39 and 21, the actual formula used is the number of people 65 and older divided by the number of people age 20-64, times 100). That means there simply aren’t enough caregivers for the burgeoning elderly population—hence the interest in robots.

America is catching up quickly. If we don’t find creative ways to help older people who have problems with basic needs such as going to the bathroom and eating and dressing, we are headed for trouble. A report just released by the Congressional Budget Office (CBO) finds that already now, “informal caregivers,” a euphemism for unpaid friends and relatives, account for over half the total economic value of care provided to elders, or an impressive $234 billion per year. Caregivers for the oldest and frailest elders spend an average of nearly 10 hours a day providing personal help.

The CBO presents a stark statistical portrait of contemporary reality and it also projects our future needs. To reflect the uncertainty involved in these predictions, it gives high, medium, and low estimates of caregiving needs between now and 2050. If the rate of impairment in elders is the same in 2050 as it is today, then we will need to double the number of caregivers from 4% of all non-elderly adults to 10%. In the most optimistic projection, in which older people are less likely to need help with their daily activities than they are today, demand for caregivers will result in 7% of all non-elderly adults serving this role by 2050 because of the growth of the elderly population. And in the event that the rate of impairment actually rises, an all too plausible scenario in light of the obesity epidemic, which predisposes to chronic diseases such as arthritis and diabetes, the need for caregivers will result in 11% of all non-elderly adults serving this function in 2050.

The CBO numbers tell us something we don’t want to hear or  we think is of little consequence—the report was not even picked up by the NY Times, the Washington Post, or the Wall Street Journal. But taking steps now can help the elderly and their caregivers today and can stave off disaster tomorrow. The Japanese model is a good place to begin: they have already invested in robots that track older people with dementia who tend to get lost, robots that aid mobility, and soft, furry, animal-like robots that are used to treat depression. Exciting research is also going on to a limited extent in the US at MIT’s AgeLab (which has developed a high tech wheelchair that navigates by voice commands), at the University of Southern California Center on Robotics (which has a robot that acts as a sort of physical therapy aide, supervising exercise programs), and at Carnegie Mellon’s Quality of Life Technology Center (which made HERB, the “Home Exploring Robotic Butler” to facilitate keeping the disabled and the elderly independent).

Technology will not solve all our caregiving needs. We will still need real people to provide companionship, to make complex medical decisions, and to plan for the future. But robots are valuable adjuncts that can do some of the mind-numbing as well as the back-breaking work that humans do today. It will take more young people studying robotics, more government investment in research, and more companies producing technological innovations to compensate for the problems older people face.

Approaching the Endgame

At age 94, one of the giants of our era is reportedly dying. Nelson Mandela has been hospitalized with pneumonia for the last 3 weeks, his fourth hospitalization in less than a year. Like all patients, Mr. Mandela deserves privacy and dignity as his life draws to a close. But whenever a public figure is desperately ill, the choices he or she makes about medical treatment provide an opportunity for us to reflect on the approach to care we would want in the final stage of life.

What is striking about  the many media accounts of his situation that I have seen is that none have made reference to hospice as a possible approach to care. The widespread assumption appears to be that hospital treatment is the only possible course and that every effort will be made to prolong life with technological means, regardless of how burdensome, ineffective and ultimately futile such treatment might be. Hospice care, by contrast, seeks to relieve suffering and to focus on maintaining quality of life as long as possible, often in the  home.

When Jacqueline Kennedy Onassis died in 1994, she made the explicit decision to leave the hospital and die at home. She had reached the point in her treatment for non-Hodgkin's lymphoma, a cancer of the lymph nodes, where she felt that further possibly life-prolonging medical treatment would cause more harm than good. She declined antibiotics for pneumonia, a complication of her cancer, and died at home, surrounded by the family, friends, and books she loved. The choice made by this intensely private but very well-known icon showed millions of Americans that it was feasible to die gracefully at home.

When Pope John Paul II died in 2005, he was also cared for in his personal residence, though with physicians and nurses in attendance. At age 84, he suffered from advanced Parkinson's disease and developed an overwhelming infection, as often happens in the final phase of Parkinson's. The Pope continued to receive some potentially curative medical interventions until the end, consistent with his personal beliefs, but he was not put on a breathing machine as his respiratory status deteriorated, he did not get dialysis when his kidneys failed, and he did not have a permanent feeding tube for artificial nutrition. The Pope's care illustrated the encyclical he had issued earlier, stating that "when death is imminent and inevitable," patients can refuse treatment that "would only serve a precarious and burdensome prolongation of life."

Life is precious. We do not want to die. We do not want to lose those we love. We do not want to say goodbye to someone as revered as Nelson Mandela.  And choosing how much and what kind of medical care to receive near the end of life is a very personal decision, with religious beliefs, cultural factors, and personal preferences all influencing people's choices. But we are all mortal.  The illness of this great man should stimulate us each to think about the approach to care we want as life draws to a close--and to write down our thoughts in an advance directive and tell our families and physicians.

Who Cares for the Frail Elderly?

A whopping 86 million Americans are family caregivers for an adult with significant health problems, according to a new report. Untrained, unpaid, and unlicensed, they take care of some of the sickest patients in the U.S.

Just under half of these caregivers provide complex medical care: this is a level of care that only doctors or nurses would be allowed to administer if the patient were in a hospital or nursing home. They supervise their family member’s medications, drugs that may have side effects so severe that patients taking them need to be hospitalized. They apply dressings to wounds, a procedure that is sometimes so painful that the patient has to take narcotic pain medicines beforehand. A minority even give intravenous medication or use equipment such as dialysis machines or ventilators that are customarily operated by specially trained professionals.

In the last three years, the percent of Americans serving as caregivers to an adult with health issues has gone from 27% to 36%, presumably related to the growth of the elderly population, the recession (which forced families to take on caregiving responsibilities rather than hiring outsiders), and the rise of chronic illness (fully 75% of older adults have at least one chronic disease such as diabetes or emphysema). The focus of the new survey is how these caregivers get the training they need to do their jobs.

The answer is both unsurprising and disturbing. When caregivers seek help, they rely heavily on a web search.

Caregivers often do consult a health professional—79% of them report they spoke to a clinician about their concerns. But they report wanting and needing much more guidance in carrying out their daily responsibilities. They say they use the internet to learn how to monitor drugs and how to diagnose and treat disease. What they uncover on the web ranges from sophisticated, up-to-date medical information to downright disinformation. Fortunately, a professional agrees with their diagnosis 41% of the time, according to the study. In the majority of cases, a clinician disagrees with the caregiver’s web-based diagnosis (18%) or the caregiver never seeks the advice of a clinician (35%).

It is time to recognize family caregivers as members of the health care team and make sure they get the right kind of training to do their job, just like their professional colleagues. To date, “caregiver support” has largely been psychosocial, intended to ease the stress that comes from taking care of a chronically ill relative an average of 20 hours a week. “Support” for the sophisticated role that caregivers often play, a role that is the key to optimizing medical treatment and minimizing hospitalizations, will require new resources. We need to be creative about designing these materials, recognizing that 60% of all caregivers have another job, usually full time. We will need to design videos and massive on-line courses (MOOCs) as well as how-to guides. The physicians who care for the frailest and sickest patients should take the lead: it’s what their patients need.