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.     

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.

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.

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.

The other day, I had a long talk with a friend about her mom. My friend lives on the East Coast. Her mother lives in the Midwest. Mom is in an independent living apartment and recently has been falling and suffering memory lapses. The other day, mom got lost trying to drive home from her regular bridge game.  

My friend realizes it is time for her mother to get more help and they have discussed the possibility of her moving closer to her daughter. But, my friend asked, which care facility would be best?

I suggested she was putting the proverbial cart before the horse. Before we could know what care setting was appropriate, we needed to know a lot more about this memory loss. Was it early Alzheimer’s? Was it stroke-related? Was it a polypharmacy issue? After all, mom is taking lots of drugs, including meds for depression, a thyroid problem, and a range of other complaints. It is not uncommon for combinations of medications to create symptoms that look very much like dementia.

Mom has a psychiatrist who treats her depression, but this doctor has little experience with elderly patients and does not seem very knowledgable about her other drugs. I suggested she see a geriatric psychiatrist–if she can find one. Once my friend learns more about the cause of her mom’s confusion, she should be much better prepared to help find an appropriate care setting.

This story was on my mind as I read an article about economic importance of early diagnosis of dementia. A new study by the Department of Veterans Affairs reports that early dementia screening can reduce first year health costs by 13 percent. More importantly, recognizing Alzheimer’s or other dementias can signal health providers to watch for related problems before they reach a crisis stage. For instance, checking to be sure a dementia patient is taking her meds properly could prevent a trip to the emergency room.  

The VA screening was remarkably easy. The study merely added a simple three-item memory test to its regular check-ups for patients over 70. Patients who failed the test were then given a more thorough diagnostic screening.