Being a family caregiver is a lot harder than it used to be. Providing personal assistance, such as help eating or bathing, is tough enough. But now, many  family caregivers are acting more like nurses. They have to manage medications, change dressings on wounds, and even monitor and operate  medical equipment, from home dialysis to mechanical ventilators.

According to a new survey by the AARP Public Policy Institute and the United Hospital Fund, nearly half of all family caregivers are providing medical or nursing services to their loved ones. This level of assistance not only puts far more pressure on these family members, it also creates new risks for those receiving care from people who treat them with the best of intentions but have little or no training.

Yet the health system has done next to nothing to recognize this new, more intense level of care by family members. For instance, half of those doing wound care, such as changing dressings or treating bed sores, said they learned how to perform these tasks on their own or from a friend or neighbor (though some reported getting help from medical professionals as well). Not surprisingly, almost half said they are afraid of making a mistake.

If paid caregivers were providing the same assistance, they’d be subject to strict licensing, training, and educational requirements. In many states, certified nursing assistants are barred by law from performing many of these tasks, ostensibly because they do not have the skills. Yet, the medical system seems perfectly OK with leaving this work to family members who often have no training at all.

Often, these caregivers are providing this high level of assistance in an effort to keep loved ones with chronic disease at home and out of care facilities. More than half report doing so  because they cannot afford paid care and no-one else is available to help. 

About 40 percent of family caregivers surveyed were adult children caring for parents and about 20 percent were spouses (usually women). However, spouses were twice as likely to be providing both nursing care and personal assistance as personal assistance alone.

Those receiving care were likely to be suffering from stoke, arthritis, dementia, cardiac disease, or diabetes. Often those receiving nursing-type care suffered from more than one of these illnesses.

This trend towards higher levels of care is only going to grow. The Baby Boomers are aging and living longer with chronic disease. Under pressure from Medicare, hospitals are discharging patients “quicker and sicker.” Increasingly those with chronic illness are resisting nursing home care. And the costs of paid care are outpacing the ability of families to pay.

At the same time, Medicare has begun to penalize hospitals that readmit too many patients. It would be interesting to see how readmission rates compare between those families that ar serving as DIY nurses, and those who can afford paid assistance. 

Family caregivers are the bedrock of our care system. The AARP/United Hospital Fund study helps us understand how important they are. I hope it will be a first step in encouraging insurers, policymakers, and medical providers to give these family caregivers the support they need.

You can’t escape the seemingly ubiquitous news stories about the latest cure for Alzheimer’s. There is only one problem: None of them are true.

Some are simply frauds. But many are over-hyped interpretations of serious research. You know the story…In what may be a major breakthrough in the battle against Alzheimer’s disease…

Over at Changingaging.org. Dr. Al Power wrote a terrific blog post the other day about how wishful thinking–and not a little greed–has combined to overwhelm good science when it comes to dementia research. We so want to believe in a cure that we are prepared to believe every rumor, false lead, or half-baked study that suggests a solution is near.   

Dr. Power, a geriatrician, associate professor of Medicine at the University of Rochester, and member of the board at Eden Alternative, described the problem this way: 

The media feeds the frenzy by highlighting every study with even a whiff of possibility as the next breakthrough. And the researchers certainly pick up on this and use the media hype to get their names out there in the public eye.

It is time to get real–both in setting the goals of research and in the way we conduct and report these studies. Irresponsible reporting does not help our cause and actually harms our efforts to improve the lives of people with dementia.

He is absolutely right.  One consequence is that precious dollars are pumped into research aimed at a cure or prevention while almost no resources are available to help learn how to better care for people who already have dementia or for training or other assistance for their caregivers.  

This battle over dollars has been going on for a long time. Drug companies, academics, and high profile advocacy groups such as the Alzheimer’s Association focus almost entirely on increasing research dollars for cure and treatment.

The Obama Administration’s recently-announced National Plan to Address Alzheimer’s Disease is also heavily weighted towards cure and prevention. Only about 15 percent of the  $156 million the White House hopes to spend on this initiative is aimed at assisting people with the disease and their caregivers (and even some of that is for data collection, not direct support).

To be sure, the plan says all the right words about the need for clinical and caregiver supports. But its priorities lie elsewhere: Big bucks research projects aimed at cure and prevention.  

As we think about this goal, we should keep two thoughts in mind: The first is there are many different dementias–as many as 100–and each likely has a unique cause and thus will require a unique approach. The second is that potential profits for developing successful drugs to treat these diseases are enormous and, thus, pharmacuetical companies will keep working to find solutions with or without government support. 

This is not to say we shouldn’t continue to work towards a cure. Of course we should.

Not only is this research important for its own sake, but as long-time seniors’ advocate John Rother has argued, the best solution to the nation’s long-term care financing crisis may be a cure for dementia.

But so far, research is teaching us that these diseases are very complicated and progress towards cures or treatments is very slow.  That’s why we should be working a lot harder to learn how best to care for people with these diseases.     

People often say that the patients most at risk in the U.S. health system are the elderly who suffer from multiple chronic diseases. But it may be that a subset of these seniors—those with chronic disease who also need personal assistance with routine activities—are in the most jeopardy.

An important 2011 research paper finds they are the most costly to care for.  Only about 15 percent of the total Medicare population suffers from 3 or more chronic diseases and faces functional limitations. But these very frail–mostly elderly–people account for 32 percent all Medicare spending, according to Harriet Komisar and Judy Feder of Georgetown University (Judy is also a colleague of mine at The Urban Institute).

On average, Medicare spent almost $16,000 on these people in 2006, twice as much as the system spent on those who had 3 or more chronic diseases but did not need assistance with daily activities such as bathing, eating, or going to the bathroom.

Medicare spends nearly twice as much for these very frail enrollees on hospital care, almost nine times as much for care in skilled nursing facilities, and almost six times as much for home health care as those with chronic conditions only. Of their average $16,000 in annual Medicare costs, 40 percent was for hospital and skilled nursing facility care—care that might have been unnecessary had they had sufficient help with personal assistance.  

Keep in mind that these costs are for Medicare only. But Judy and Harriet found that about 43 percent of the very frail received both Medicare and Medicaid benefits. Because Medicaid—not Medicare– pays for the personal assistance for these “dual eligibles,” the research excluded those costs. For instance, the study looked at costs in a skilled nursing facility—covered by Medicare—but not long-term stays in a nursing home, which are not (though they may be covered by Medicaid).

Overall Medicaid spends $120 billion on long-term care services for the frail elderly and younger adults with disabilities.

Judy and Harriet conclude that these high costs are a major reason why it is important to coordinate medical and long-term care services for these patients. While they focused on costs only, it is likely that providing better, more coordinated overall care would not save money but improve these patients’ quality of life. After all, preventable events such as falls and infections, or poorly managed diseases such as congestive heart failure or diabetes may be driving these costs.  

People who need help with activities of daily living—many of whom have dementia or some other cognitive impairment—are especially at risk for events such as these.  

Managed care has a bad reputation among many, largely as a result of the HMO experiments of the 1990s. But whether you call it integrated care, coordinated care, organized care, or managed care, well-structured linkages between medical treatment and long-term care services and supports are critically important for the frail elderly.     

The Affordable Care Act includes important experiments aimed at achieving that goal. In many ways, these are the law’s most far-reaching initiatives. Judy and Harriet’s paper is more evidence of why.

The overuse of antipsychotic drugs “is one of the most common and longstanding, but preventable practices causing serious harm to nursing home residents today,” Toby Edelman of the Center for Medicare Advocacy told the Senate Aging Committee last week.

She said these drugs are often used off-label (that is: for purposes other than the ones for which the FDA approved them) and that overuse both costs Medicare hundreds of millions of dollars and harms patients.  

Last year, an investigation by the federal Department of Health & Human Services inspector general found that 14 percent of nursing home residents were prescribed anti-psychotics but 8 in 10 were off-label, and, thus, not for treatment of mental illness.

Still, this is not a simple issue. Sometimes, aides cannot provide basic hygiene for dementia patients without the use of these meds. Patients can be too violent or agitated for an aide to change their diaper or bathe them.

Edelman said the Center is not opposed to all uses of these medications but rather wants nursing facilities to try other solutions first.  

Alternatives to drugs can be time consuming and may require special skills. For example, a patient may react poorly to a specific aide—not because the aide is not competent but because there is something about her that triggers agitation. A nursing home can figure this out and make adjustments. But it takes time and training.

Similarly, many dementia patients resist being given a shower, so bed baths may reduce agitation and be more appropriate. Yet, this too requires taking the time to understand why the patient or resident is uncomfortable and finding a better solution.  

Alternative therapies, such as music and other non-pharmacologic solutions,  may also work, although we need more evidence-based research to know for sure.

Dr. Jonathan Evans, the incoming president of the American Medical Directors Assn., urges that caregivers learn ways to better understand why a patient’s behavior changes and to address the causes.  But, for too many facilities, it is easier to give a patient a pill.

This fall, the Consumer Consortium for Advancing Person Centered Care and the UCLA Luskin School of Public Affiairs, with the support of the U.S. Senate Committee on Aging, will hold a forum on non-drug interventions for people with dementia. The goal will be to develop consensus best practices for the use of non-drug alternatives.  (Full disclosure: I serve as an unpaid member of the leadership council of the consortium’s parent organization).

This initiative follows an Aging Committee hearing last fall on the issue.  The use of anti-psychotics is an important and complex issue. This is an opportunity for medical professionals, nursing facilities, researchers, and consumers to work together to find cutting-edge ways to care for dementia patients in the safest and most effective ways possible.

Assisted living and other residential care facilities are looking more and more like nursing homes. About one in four provide skilled nursing services, between half and two-thirds offer case management, and– at least among larger facilities—two-thirds offer their residents physical or occupational therapy. More than one-third of residents will make an emergency visit to the hospital and more than one in four will be admitted to a hospital during the course of a year.

Almost 42 percent of facility residents have some form of dementia, and about one-third of them are being cared for either in specialty homes or in designated units of larger institutions. One-third have heart disease and half suffer from three or more chronic illnesses. These are just some of the findings from a recent study by the federal National Center for Health Statistics.

For consumers, this trend significantly expands their care options beyond moving to a nursing facility or staying at home. But it also means they need to be very careful in their choices: If they move into a residential care facility expecting high levels of assistance, they need to be very sure the operator is equipped to deliver that service. Wood paneling and flowers in the lobby are not enough.

Likewise, owners of care facilities need to recognize that a new generation of residents needs more assistance with activities of daily living and greater medical support. The days when assisted living facilities were run like hotels for old people are long over. However, operators must find a way to provide these additional services without slipping into the kind of medical model that consumers resist.  

Finally, Medicaid, which has been reluctant to finance stays in residential care facilities, needs to start thinking more creatively about the niche they serve. And government needs to find a regulatory middle ground that allows these facilities to operate creatively while protecting increasingly vulnerable residents.    

The new NCHS study looked at a wide range of facilities, from small homes with 4-10 beds to large 100+ bed institutions. In 2010, about 31,100 facilities owned about 972,000 licensed beds. However, they served only about 733,000 residents, for a vacancy rate of about 25 percent.

Until recently, these care homes have been largely financed by individuals paying out of pocket. But the recent expansion of Medicaid home and community based waiver programs is changing that mix. The study found that about 20 percent of residents are receiving Medicaid assistance for their long-term care services (but not for room and board).

About half of the care homes have 10 residents or less and only about 2,100, or 7 percent, have more than 100 beds. However, almost a third of all assisted living residents live in those big facilities. Residential homes are overwhelmingly for-profit (about 82 percent) and about four in ten are run by large chains.

With average fees running about half that of nursing facilities and with an environment that is often more attractive to seniors (and to their adult children), residential care facilities are become a more popular choice for consumers. But as their population of sicker residents in need of more assistance grows, operators must find ways to adjust their models of care. And consumers must learn what services these facilities can, and cannot, offer.

On Monday, a presidential advisory group set a goal to prevent and effectively treat Alzheimer’s Disease by 2025. There is much to like about this proposal, but it should come with a consumer warning: There is a lot less to this plan than meets the eye.

Let’s start with the good news. This initiative is potentially an important step forward as the nation confronts Alzheimer’s and other dementias that currently effect more than 5 million Americans–a number that will nearly triple by mid-century. The Department of Health and Human Services estimates that 40 percent of those 85 and older will suffer from some form of dementia before they die.    

The panel identified five specific goals. The aim of enhancing research to develop effective treatment and prevention of dementia by 2025 will get the most attention. But the others, including improving  the quality of care of Alzheimer’s patients, supporting their families, enhancing public awareness, and improving data collection are all extremely important.

The draft report also recognized the need to better coordinate medical and long-term care for dementia patients, as well as improving care transitions for this very vulnerable population.

The panel deserves kudos for all of these initiatives, and policymakers should absolutely pursue them all. 

But the draft is not perfect. Here is what I don’t like about it: 

It seems overly focused on Alzheimer’s. True, Alzheimer’s is by far the most common dementia and there is good reason to lavish attention on it. But there are many other forms of memory disease, such as stroke-related dementia and Lewy Body Disease.  These will be treated differently, and drugs that prevent or slow Alzheimer’s are not likely to benefit those diagnosed with other dementias.  

Money. There isn’t any. The report does not set a goal for research funding.  And it barely acknowledges the tremendous financial cost that families bear for providing the personal assistance dementia patients require–often for many years. Without resources, either public or private, all of the panel’s grand plans are a pipe dream.

And keep in mind the budget background of this initiative: In coming years, there will be tremendous pressure on the Medicare and Medicaid budgets, non-Medicaid government support to all of the frail elderly, and NIH research funding. What will happen to this initiative in an era of constrained government resources? This report does not say dementia will get priority in what will be an ugly battle for funding.

The relationship between government and the drug companies. The payoff for the firm that develops a successful dementia drug will be staggering.  It would be great to see a new partnership where, in return for research funding, government receives an equity share of  profits from any blockbuster Alzheimer drug that is developed with its support. In an era of budget cuts, plowing that funding back into public research programs could go a long way towards supporting future studies.

I remember President Nixon’s 1971 war on cancer. Four decades later, we still argue about how successful it was.  But it accomplished one thing: It raised the profile of a disease that people didn’t even want to talk about.  If President Obama runs with this draft framework, he can do the same for Alzheimer’s and other dementias. That itself would be an important contribution. But it won’t be enough.

Yesterday, I participated in an AARP program with several authors of books on caregiving. One fellow panelist, the novelist Walter Mosley, was wonderfully provocative as he reflected on what he calls “the great equalizing effect of great age.” Mosley, whose mother was Jewish and whose father was black, put it this way:  “White people become black people when they can no longer care for themselves.”  The older you get, he added, “the more you move into the Third World–” marginalized by the rest of society.

Frances Norwood, who has written about end of life issues, calls this phenomenon social death: The idea that many frail elderly and younger people with profound disabilities the human connections that make life what it is. Before they physically die, they are discarded by friends and even family, become defined by their disease, and lose all control over their lives as decisions are made for them by others.

In his recent novel The Last Days of Ptolemy Grey, Mosley puts readers into the soul of a 91-year old man with dementia. Ptolemy lives alone in an apartment filed with the memories his mind can no longer manage.  He is a hoarder. He can’t bathe himself and because his toilet is stopped up, he must urinate in a cup and wait until someone can take him to a nearby restaurant to defecate. But Ptolemy has things he wants to say and to do. There is still, behind the dementia, a man.

Before the program, I asked Mosley where he got the idea for Ptolemy. He told me about his mother who had dementia and his struggles to care for her. Later, he told another story: His mother had never been able to say she loved him. I know she did, Mosley remembered, but she could never express it. As her dementia progressed, Mosley would call her three times a day. And he’d end every call by telling his mother that he loved her.

For three or four months, he remembers, she’d never respond. But when day, he said, “I love you momma.” And she answered, “I love you Walter.”

As I cared for my own father, I found small events such as this extraordinarily powerful. In some way, they wash away the stress and despair that so often accompanies caregiving. They are, as Mosley says, “moments of incredible intimacy you wouldn’t have experienced otherwise.”

My fellow authors and I provided a wide range of views on caregiving from our varying perspectives as physicians, advocates, novelists, journalists, or researchers. Yet, we each have been caregivers ourselves. And Mosley spoke eloquently for us all—not as long-term care experts, but as wives and daughters, and husbands and sons.

On Thursday, I’ll be participating in an ambitous program sponsored by AARP where  10 authors will discuss their experiences and views about the challenges of family caregiving. Most of us have had the personal experience of caring for family members and know about the subject first-hand.

Some of our books, such as my own Caring for Our Parents, use the personal stories of caregivers to describe the nation’s flawed long-term care policy. Others, such as Peter Rabins (who wrote the terrific The 36-hour Day) provide valuable advice. But I’ll be most excited to meet the novelist Walter Mosley, whose most recent book “The Last Days of Ptolemy Grey”,  is a powerful story of a man suffering from dementia and the young woman who cares for him.

Other participating authors will include Carol Levine, Bob Kane, Suzanne Mintz, Cheryl Woodson, Gail Sheehy, Jonathan Rauch, and Jane Gross–all of whom surely will have interesting things to say about caregiving and caregivers.

The program will be held at Union Station in Washington, D.C. this Thursday, December 1 from 9:00 AM to Noon. To learn more, to attend, or to register for the Webcast, link here.

The Metlife Mature Market Institute has released its annual survey of the cost of long-term care services, including nursing homes, assisted living facilities, adult day programs, and home care. And the news is not good. On average, provider costs rose far faster than the rate of inflation. The only exceptions were home care services, where costs were unchanged from 2010 to 2011.

On average, nursing home costs rose from $229 a day for a private room in a nursing home to $239, or more than $87,000 per year. Adult day program costs rose from $67 to $70. And the average monthly cost of assisted living rose by 5.6 percent from $3,293 to $3,477, or about $42,000 annually. Keep in mind, these are costs to consumers who pay out of their own pocket or with long-term care insurance benefits. Medicaid normally pays far less.   

While assisted living facilities costs rose faster over the past year than nursing homes, they remain far less expensive–only half the cost on average. For dementia care, a private room in a skilled nursing facility costs $92,000 on average while a unit in an assisted living facility costs about $55,000.

However, consumers need to be very careful about assisted living costs, which can often jump substantially if residents need additional care. For instance, a facility will add, on average, $307 per month for helping a resident bathe, an extra $530 a month for other personal care such as toileting, transferring, or incontinence care, and an extra $370 per month to help manage medications.

Adult day programs remain a relative bargain at just $70-a-day. Yet, they remain underused.

Just as important as national averages is the wide variation of costs around the country. In Alaska, for example, a nursing home costs costs a staggering $655-a-day for a private room, while the cost in rural Louisiana was $141-a-day.

Similarly, home health aides cost only about $9-an-hour in Louisiana but more than twice as much, or $19, in New Hampshire.

Even as the costs of care continue to rise, the nation remains unable to figure out how to pay for these services. Americans don’t save–fewer than of those 65 and older have financial assets of $55,000 or more and only about 7 million have private long-term care insurance.  And, of course, the CLASS Act, the attempt to create a national long-term care insurance program, has been abandoned by the Obama Administration. As a result, these paid services are simply out of reach for many, who have little choice but to rely on relatives and friends. 

The MetLife report is just the latest evidence that our system of long-term care is broken for all but the well off.

Read this powerful story by Sally Jenkins about University of Tennessee women’s basketball coach Pat Summitt, who, at 59, was recently diagnosed with early onset Alzheimer’s.  Despite the disease, the legendary coach says, “You don’t quit living. You keep going.”

In fact, Summitt isn’t even planning on quitting coaching–at least not for a while. For now, she’ll rely on her assistants to help manage games. While she is still in the early stages of the disease, it is not clear how long she’ll be able to remain on the sidelines.

Summitt is the most successful coach in the history of women’s basketball–her teams have won more than 1,000 games and eight national championships. Last year, even as she began showing signs of yet-undiagnosed cognative and physical problems, her team won 34 games and lost just 3. Coaching a top college sports team is a high-stress and high-profile job like few others. Every step (and mis-step) is scrutinized. Plus, a coach has a tremendous obligation to college kids who are, themselves, under a microscope. In early stages of dementia–even in that pressure-cooker–Summitt did her job well.

For now, as Jenkins so beautifully puts it, “there is a faint sense of dimming, as if a jar has been placed over a candle.”

The hard-charging Summitt admits she was in denial about her disease until recently. She’d misplace her keys or cellphone, or forget the name of the hotel where her team was staying. But she’d rationalize this confusion as something she had always had, or the consequences of being an overly-scheduled multi-tasker. But when she’d sometimes be unable to recognize opponents’ plays, she realized something was wrong. She finally agreed to a workup at the Mayo Clinic, where her dementia was diagnosed.

What happens next? Unlike many, Summitt likely has the financial resources she’ll need to help pay for care as her disease progresses. And she has a huge circle of friends and colleagues. But she is divorced and it appears that her primary caregiver will be her son Tyler, who is just 20.

A college junior, Tyler is just becoming aware of what the future has in store for his mother, and for him.

This will be no Hallmark moment. The progression of dementia is difficult to predict for any individual patient, but we all know how the game is likely to end. And it won’t be easy. Not for Pat and not for Tyler.

Still, Summitt is now confronting Alzheimer’s, talking publicly about the disease, and using her experience to teach others–which is what, after all, a good coach does.  Kudos to Pat Summitt for sharing her story and to Sally Jenkins for writing it.