TWENTY-EIGHT

NEW YORK CITY

Fall 2014

So that was the report from the pipeline. No silver bullet, but maybe some repurposed drugs by 2020, likely for early-stage patients: the goal for managing—not curing—Alzheimer’s. For a geriatrician like Howard, the drug story is hopeful but frustrating. The story in home care is downright maddening. Drug research and home care: those are the two sides of the Alzheimer’s crisis. The real tragedy is how much better home care could be handled right now, without any new miracle drug.

B.’s disappearance, it turns out, is an all-too-typical outcome of insufficient, unsupervised home care. I blame myself—clearly I shouldn’t have let B. get on that jitney—but she’d done it before, put on at one end by Dana with me at the other to meet her, and nothing had happened. How were we to know, without some guidance, at what point she could no longer do that? “Most medical practice is about writing a prescription,” Howard explained. “But this illness requires care management, and attention to home care, and advance planning—and prevention. What happened to B. is a perfect example of how bad care leads to bad outcomes, and it has nothing to do with pills.”

With Alzheimer’s, the patient usually sets off a first cascade of bad outcomes herself. So scary is the disease that most people simply ignore their worsening symptoms of memory loss—for years—and don’t go to a doctor for them. When they do, they usually go to a primary care physician. They mention memory loss—names, dates, that kind of thing.

That’s when the system—our troubled medical system—impacts care. The average office visit for a patient with a primary care physician is about eight minutes. Our current structure of medical insurance, including and especially Medicare, the national insurance for 97 percent of elderly people, creates precisely the wrong incentives through its in-office reimbursements. A doctor who spends an initial hour assessing and diagnosing Alzheimer’s, and then another hour with a patient and his or her caregiver for essential Alzheimer’s counseling, will soon find he can’t pay the rent.

As we knew now, the pills available, like Aricept, at best have a modest, stimulating effect on a patient’s memory. They do nothing to halt the progress of the disease, much less reverse it. A doctor will likely prescribe one of those; he may also prescribe an antidepressant for some patients, as B.’s doctors did for her, and that, of course, can make a patient feel better—while her Alzheimer’s is getting worse.

Thanks to the system, what happens to the patient after that initial visit is…not much. The patient goes home, takes her pills, and copes, as does her caregiver—until a crisis such as a hospitalization becomes unavoidable. Most patients aren’t even “staged,” or properly and fully assessed, which is to say they aren’t given the various cognitive and functional questions that Howard gave B., as a new patient, to determine at what stage of the disease she is, and what her capabilities and home-care needs are. Those visits take time: B.’s initial visit at Howard’s office lasted roughly an hour, far too long for the system. “This is what a geriatrician does,” Howard explained. “Unfortunately, there are very few of us out there.”

Staging and overall assessment can help with a whole range of options, both for the patient and her caregiver. Howard gets passionate on the subject. “To the primary care physician I say: your role with Alzheimer’s, as with any chronic disease of old age, is not just to prescribe medicine but to care for the patient. There are so many caregiving needs! Can she drive, use the phone, manage her finances, plan a bus trip to get food? And later: can she bathe, dress herself, groom herself, feed herself, walk?”

A primary care physician should counsel his patient—and the patient’s caregiver—on all these needs, and be in regular touch about how they’re being met. But that’s hard, if not impossible, with the current system. Most doctors can’t take that time. They also lack the training. Fortunately, there are a growing number of “memory centers,” often based in neurology practices generally at larger medical centers, that are offering comprehensive diagnostic services and multidisciplinary care for Alzheimer’s. In France, the government has set these up all over the country.

“A large part has to do with multidisciplinary care—that’s what’s required,” Howard told me. “A knowledge of aging is important; knowing how to deal with the medical and nursing and social work and other issues that arise from Alzheimer’s and require community services, up through the end-stage issues like malnutrition and incontinence and pressure sores, and even palliative and hospice care. The average doctor doesn’t—and really can’t—do this. Geriatricians, and some of the memory centers, do sometimes have the staff for this, but they’re few and far between in the US.” Recently, Medicare tried to address this problem by providing a reimbursement for doctors and their staff to provide “chronic care management” for patients, including home-care guidance to patients and their caregivers. Sounds great, right? Certainly a step in the right direction, but the reimbursement is about forty dollars per patient per month and requires documentation. The average doctor’s office overhead consumes about 50 percent of his salary, so we’re talking twenty bucks, take home, before taxes.

For the caregiver and his loved one, home-care needs translate into one word in red neon letters: MONEY. And until the system changes, there’s no avoiding that.

The costs begin long before a caregiver throws in the towel and hires home-care help. They come in terms of lost wages—first for the patient, then for the caregiver. Often a caregiver is forced to quit his or her job altogether. That loss may have larger ramifications. Imagine a hospital nurse who has to leave her job to care for her own mother at home. That’s the hospital’s loss, too.

Not many Americans can afford the $100,000 average yearly cost of home care. For those over sixty-five, Medicare steps in, which means we all pay. Only Medicare doesn’t pay all the bills—or even what it purports to cover. Certainly long-term care is not paid for by Medicare, and generally not adequately by Medicaid. Alzheimer’s is often “under-coded” by health-care providers in clinical practice and hospitals. That means some medical needs aren’t deemed important, and so aren’t covered. Other costs are reimbursed, but only partly. All too often, a family’s resources get whittled down to the point that they have to go on Medicaid: they are, in fact, destitute. Alzheimer’s has wiped them out.

By now I could see there was not just one war to be fought, but two. Pushing to get funding for new drug trials was one. Coming to terms with the long-term, human tragedy of Alzheimer’s was the other. And who suffers the most disproportionate losses in both wars? That, too, was clear to me now: African Americans, the same ones who’d suffered the most in every major US conflict from the Civil War on.

I needed to know more about that.

LESSONS LEARNED

THE INEVITABLE QUESTION OF INSURANCE

I’ve learned that fighting medical insurance companies for coverage of Alzheimer’s-related expenses can be as nasty and unrelenting a struggle as taking on the disease itself. Here are the realities:

B. was sixty-four when I took her to the doctor who tried the depression patches on her back. She was still sixty-four when she got those cognitive tests, from which that doctor concluded she probably had Alzheimer’s and prescribed a PET imaging test. So B. didn’t have Medicare yet, but we did have Empire Blue Cross Blue Shield. I had thought those visits would be covered. No such luck. Both doctors were “out of network.”

Unfortunately, the PET imaging wasn’t covered, either. So that month, when the bills came, I had a bill for $1,000 or so from the depression-patch doctor, $4,000 for the cognitive tests, and another $4,000 for the PET imaging. Oh—and our monthly premium bill from Empire Blue Cross Blue Shield for about $1,000. What had we gotten from Big Blue? Absolutely nothing.

If there was any blessing on the insurance side, it was in B.’s birth date: on August 24, 2014, she turned sixty-five, and I found myself filling out her Medicare forms. Now that she’s covered, the costs are far lower than they would have been pre-Medicare. Far lower. But that’s not saying Medicare is a free lunch. It covers office visits, but only after a deductible of about $400 in our case, as a family subscriber. It doesn’t cover PET imaging, either.

Medicare covers inpatient hospital care with most of the doctors’ fees included. Medicare Part D also pays for most—but not all—prescription drugs. Over the disease’s long progression, other needs are covered less completely, if at all. Medicare will pay up to one hundred days a year of skilled nursing home care under limited circumstances—and only after a hospitalization! It’s not clear what family caregivers are supposed to do the remaining 265 days of the year with loved ones who have moderate to severe Alzheimer’s and need daily help, and who don’t want or need to be hospitalized due to their condition.

Long-term nursing home care is not covered by Medicare—period. If you don’t have the money to pay for a nursing facility, you just turn your home into a nursing facility—it’s free!

For patients judged to be near the end of life, Medicare will pay for hospice care done in the home, or in a nursing facility, or an inpatient hospice facility.

Okay, a nice sendoff, at least.

Just out of curiosity, I called Empire Blue Cross Blue Shield to ask what they would have covered if B. had stayed on their rolls. In other words, if B. had gotten early-onset Alzheimer’s at, say, fifty years old, and had only private insurance to see her through the duration, what would that have meant? I reached a nice benefits lady named Catherine, who kept having to check on the details but always came back on the line with them. Catherine’s father had died of Alzheimer’s, as it turned out.

Catherine confirmed that office visits are covered, after your deductible, whatever the deductible is in your plan. She said that some tests are covered, too, once you get a specialist’s referral. But that’s only if the specialists are in network. I already knew that my own doctors were out of network. Just one of those catch-22s.

I learned that Empire does cover home-care visits by a skilled nurse, but only up to forty visits a year. The nurses, of course, have to be “in network.” That could mean someone who lives nearby, but more likely much farther away. The fee? A deductible first has to be met. Then Empire pays 95 percent of the “allowed amount.”

What is the “allowed amount”? I asked.

Catherine told me it’s the amount negotiated for a patient’s care between his doctor and his insurance company. As Howard confirmed, there isn’t much, if any, negotiating to be done by the doctor: Empire calls the tune. So if a test costs $1,000, the insurance company may decide that its allowed amount for that test is $200, and pay 95 percent of that. The doctor either accepts that deal—or declines to accept Empire Blue Cross/Blue Shield.

And so it went with hospital and hospice care: always that reassuring 95 percent that Empire Blue Cross Blue Shield would pay…but always 95 percent of the “allowed amount” between Empire and a doctor, which in most cases was so low that the doctor might end up refusing to perform that service for the “allowed amount.”

OTHER ALTERNATIVE TREATMENT HOPES

In addition to BDNF, a number of other alternative therapies offer hope for Alzheimer’s, but none are proven, as yet, and some may actually be detrimental to your health. Here’s a roundup:

Acupuncture

Some studies have indicated that acupuncture can address the depression and insomnia often associated with Alzheimer’s.

Aromatherapy

The idea that essential oils, derived from plants, can have soothing effects is generally accepted. Whether it goes so far as to improve cognitive skills in patients with Alzheimer’s is unproven, though possible. The Alzheimer’s Society specifically notes lemon balm (Melissa officinalis) and lavender oil as possibly helpful with Alzheimer’s, though again, the proof isn’t there as yet.

Bright Light Therapy

The common symptom of “sundowning,” which B. may have experienced as extra anxiety and restlessness on that Very Bad Night as the winter sun set, may be offset in the home by special bright lights. In bright light therapy, as the Alzheimer’s Society explains, “a person sits in front of a light box that provides about 30 times more light than the average office light, for a set amount of time each day. One small but well-conducted study showed promising effects of bright light therapy on restlessness and disturbed sleep for people with dementia.”

Habilitation

For everyone with Alzheimer’s, but especially those who’ve progressed from the mildest stages, a nationally recognized expert in the field has a wise and different way of treating afflicted loved ones in the home. She calls it “habilitation,” and what it amounts to is a whole different approach for minimizing the stress of the disease on all concerned.

The expert is Joanne Koenig Coste, and her book is Learning to Speak Alzheimer’s. If I can boil it down to a sentence, “habilitation” is about seeing Alzheimer’s through the eyes of the loved one who has it, and making a lot of very profound changes, as a result, in the way the family treats her.

Take the all-too-common statement a loved one with Alzheimer’s makes about her parents: that they’re still alive, and she plans to see them soon. You know what the knee-jerk response is: “No they’re not! They’ve been dead for years!” So jangled is the afflicted person—sheepish, confused, agitated—that she tends to react negatively, either declaring her family member has just told her a lie, or even lashing out physically. Why not instead respond by saying, gently, “Tell me what you love most about them.” The patient is soothed, and what harm is done by this little white lie, if that’s even what it is?

That’s the essence of habilitation.

In her book, Joanne goes through all the daily rituals of home life with an afflicted person, and tweaks them through the lens of habilitation. Just putting the toothpaste on the toothbrush before he goes into the bathroom—and putting the razor next to the shaving cream—can make a loved one’s ablutions easier to cope with for him. Putting the day’s clothes out on the bed. Removing unnecessary utensils and other objects from the dining room table. More subtly, the “habilitator,” as Joanne puts it, should keep an ear open for odd, recurrent sounds that may go unnoticed by everyone else but jar and perhaps upset the loved one with Alzheimer’s. Putting dimmer switches on the lights, and turning them up as the afternoon light fades, may avoid the anxious hour of sundowning. Putting a black mat by the front door may subtly discourage the loved one from going out wandering. As the disease progresses, a person with Alzheimer’s may be startled and alarmed by her image in a mirror, perhaps thinking she’s seeing an intruder. Best, then, to remove the mirror—and furniture that may be hard to navigate.

At the same time, Joanne suggests some helpful additions. Childproofing extendable gates at the top and bottom of the stairs. Posters that show sun-filled, attractive destinations. Kill switches on the stove and other kitchen appliances that may cause harm. And outside: perhaps an herb garden that the loved one with Alzheimer’s can savor and help maintain on summer days.

Joanne’s book has far too many other wise words of advice to include here, but I’ll quote just one more—a sentence that sums up the essence of habilitation as an alternative therapy. “Never attempt to reason with someone who has lost her reason.” Instead, just do all you can to keep her happy and at peace.

Amen.

Herbal Medicine

Among other Western and Asian herbal medicines that have anecdotal effectiveness with dementia are Choto-san, which contains eleven medicinal plants; Kami-Umtan-To, a combination of thirteen different plants; and Yizhi Jiannao capsule—a Chinese traditional herbal medicine that has had some benefit with vascular dementia, and may work with Alzheimer’s. The National Institute of Medical Herbalists is one source for more information; the Register of Chinese Herbal Medicine is another.

Marijuana

As a national debate swirls around the benefits of marijuana for alleviating pain in cancer and various neurological diseases, new evidence suggests that it may be effective in blocking the formation of amyloid plaques. Last year, a research team from the University of South Florida published its findings in the highly regarded Journal of Alzheimer’s Disease. Its conclusion: the chemical in marijuana known as THC appears to slow the production of the beta-amyloid protein that forms those plaques. Though scientists continue to argue whether the plaques or tau tangles play the principal role in killing brain cells, most scientists acknowledge that amyloid plaques play at least a role. If THC can keep those plaques from forming, might it actually be the cure for Alzheimer’s? One of the study’s authors cautions that more research is needed. Even if THC does block plaque formation, it may not be safe for everyone: many are the prospective miracle drugs that turn out to stop a disease while harming the patient. Howard, for one, is adamant: he won’t even consider prescribing marijuana to any patient unless and until a whole lot more testing is done to confirm its safety and efficacy—and determine that it has no adverse behavioral effects. He’s skeptical that marijuana will meet that threshold.

This is one of those possibilities that I put in the category of promising for the future—but of no help for B. or any other mid- to severe-stage Alzheimer’s patients. Their plaques have formed already; that ship has sailed. Still, it’s a cheering report, maybe the most cheering I’ve heard about yet. And the study’s success has that Florida team now trying the cocktail approach—putting THC in with caffeine and other natural compounds that might slow the growth of those plaques. The cocktail approach is what made AIDS a manageable disease. Maybe it’s the answer for Alzheimer’s, too.

Massage

Though no scientific studies affirm the therapeutic value of massage, anecdotal experience—and common sense—suggest that it can alleviate anxiety, agitation, and depression.

Meditation and Yoga

A study done at Beth Israel Deaconess Medical Center in Boston divided a group of fourteen adults between the ages of fifty-five and ninety. One group was given regular care but no meditation or yoga; the other was given the same care but practiced yoga and meditation at least two hours a week. The latter group had less brain atrophy, especially in the memory-central hippocampus, and better brain connectivity.

Again, no guarantees, but meditation is given credit for everything from diminishing stress in Alzheimer’s patients to lessening the sense of social isolation that many feel. It’s said to reduce the stress hormone cortisol, associated with the risk of developing dementia.

Bottom line: there is nothing bad about meditating, and maybe a lot of good. B. and I haven’t done it ourselves yet, but it’s on our short list for 2015, and the Hamptons have so many yoga options that it’s hard to avoid them!

Music Therapy

Again, no scientific proof exists to support it, but music therapy appears to ease the anxiety and agitation in Alzheimer’s patients. Soothing music that the patient likes may, if played for at least half an hour for the patient in an otherwise quiet room, have the same effects it has on the rest of us!

TENS

A mild electrical current is relayed through electrodes stuck to the skin, in the process called TENS, but more formally known as transcutaneous electrical nerve stimulation. It may cause a slight prickling feeling, but it is not at all painful—and indeed is used to alleviate pain, often with women in labor. Again, there’s no proof that it eases anxiety and agitation in Alzheimer’s patients, but there is some anecdotal suggestion that it may.