The Hospital Is No Place for the Elderly (3rd of 3 installments)

https://www.theatlantic.com/magazine/archive/2013/12/the-home-remedy-for-old-age/354680/

The elderly flock to Phoenix, Arizona. Not surprisingly, the city is home to one of the country’s biggest nonprofit hospice organizations, Hospice of the Valley. Better than most people in the medical system, hospice providers understand the trouble with hospitals. In the early 2000s, Hospice of the Valley began experimenting with an in-home program designed to bridge the frailty gap—that is, the gap between hospital and hospice. That experiment led to the development of a team-based approach in which nurses, nurse-practitioners, social workers, and sometimes physicians visit clients’ homes, provide and coordinate care, and observe people outside the context of the medical system. “That face time is what makes the program work,” David Butler, Hospice of the Valley’s executive medical director, told me. Butler says that for the 900 people it serves, the program decreases hospitalizations by more than 40 percent, and ER visits by 25 to 30 percent.

Though the program collects whatever payment it can from Medicare and private insurance, it operates at a loss, and is run as a community service and a form of R&D. But things have changed recently. Insurance companies and other providers have begun asking Hospice of the Valley to contract with them to pick up their caseloads of high-cost, chronically ill patients. At the beginning of this year, the program was earning enough in reimbursements to cover one out of seven patients; today the rate is more like one in three. That is still not enough, but when a few more big contracts come through, Butler says, perhaps in a year or 18 months, enough of the patient base will be covered to tip the program into the black.

This would have been impossible a few years ago. Most people saw in-home care as too expensive and logistically complicated even to think about—and in any case, no one would pay for it. So what’s happened?

A few things, not least among them the Affordable Care Act. Under the new health-care law, Medicare has begun using its financial clout to penalize hospitals that frequently readmit patients. Suddenly, hospitals are not so eager to see Grandma return for the third, fourth, or fifth time. Obamacare has also earmarked money specifically to test new care models, including home-based primary care. Thanks to a $13 million Medicare innovation grant, for example, Sutter is rolling out Advanced Illness Management to its entire health network, to test whether the program can be scaled up. If the results of such tests are good, that would provide impetus—and of course, the very fact that Medicare is investing in the experiment signals its interest. Perhaps most important, Obamacare is changing the business calculus by creating alternatives to fee-for-service payment. It is beginning to set up new provider networks and payment schemes that let health systems and insurers share in what they can save by preventing unneeded treatment (while also requiring them to shoulder some of the risk of cost overruns).

Those reforms are still fledgling, and too technical to garner public attention amid the ballyhoo over insurance mandates and the like, but they have already begun to reinforce what people in the geriatrics world tell me is a change in the culture of health care. “The idea of cost avoidance is no longer categorically rejected,” Butler says.

Stuart speaks of a new receptiveness among health systems’ financial executives, at Sutter and elsewhere. “A few years ago, you couldn’t get a new idea across the desk of a CFO unless it generated revenues. If all you could do was save money, it was like, forget it.” Now, he says, CFOs want to hear about savings, because they expect the old sources of revenue—more treatments with more gadgets at higher costs—to dry up. Jeff Burnich, a vice president at Sutter, told me that the business case for aim is only getting stronger. “Most health providers, if not all of us, lose money on Medicare, so how we make up for that is, we cost-shift to the commercial payers,” he said. But the space for cost-shifting is shrinking. “The way you bend the cost curve now is by focusing on where there’s waste and inefficiency, and that’s the end of life in the Medicare population.” He expects to see a wave of hospitals fail in coming years if they don’t provide better value. “The music has stopped,” he said, “and there are five people standing, and one chair.”

Switching to a home-based model of primary care will be a challenge. Medicare, a bureaucratic behemoth designed in the 1960s, moves slowly and will need a lot of time to adjust. Physicians, a notoriously self-important lot, will need to see themselves as part of a team in which a nurse or a social worker often takes the lead. Nurses will need to see hospitalization as a last rather than a first resort. Patients will need to learn that home care can be as good as hospital care, often better. None of this will happen fast.

Still, the mood among people I’ve talked with in the home-based movement is upbeat. I think of them as mammals skittering beneath the feet of dinosaurs, fragile and vulnerable in a newly established niche but better adapted to the changing ecology. The very fact that change agents like Brad Stuart at Sutter, George Taler at Washington Hospital Center, and David Butler at Hospice of the Valley have found success and built constituencies within big corporate health-care systems speaks volumes. At Sutter, aim has acquired institutional and financial momentum of its own; executives there say they expect to expand their annual patient load from about 2,000 today to between 5,000 and 7,000, which would make it the Sutter network’s standard method of care for the frail. “We can’t staff up fast enough to meet the demand,” Sutter’s Jeff Burnich said. “It would be easier to close a hospital than to close this program.”

Believing that aim’s future is secure, Brad Stuart recently left Sutter and, with a colleague, formed a consulting company called Advanced Care Innovation Strategies, to advise health systems and insurance companies around the country on better ways to cope with frail patients and advanced illness. With his 65th birthday coming up, Stuart will soon qualify for Medicare himself. His wife wishes he would slow down, before his own frailty course sets in. He refuses. “That would be like spiritual suicide right now,” he told me, “because there is so much going on. I’m more hopeful all the time. We’ve rolled the rock all the way to the top of the hill, and now we have to run to keep up as it rolls down the other side.”

The Hospital Is No Place for the Elderly (2nd of 3 installments)

https://www.theatlantic.com/magazine/archive/2013/12/the-home-remedy-for-old-age/354680/

The “frailty course,” a gradual and medically complicated downslide, was once exceptional but is now the likely path for half of today’s elders.

Home-based primary care comes in many varieties, but they share a treatment model and a business model. The treatment model begins from the counterintuitive premise that health care should not always be medical care. “It’s not medical treatment, it’s helping meet personal goals,” Brad Stuart said. “It’s about ‘Who is this person, and what do they want in their life?’ ”

In Sutter’s Advanced Illness Management program, known as aim, each patient is assigned to a team of nurses, social workers, physical and occupational therapists, and others. The group works under the direction of a primary-care physician, and meets weekly to discuss patient and family problems—anything from a stroke or depression to an unexplained turn for the worse or an unsafe home.

I sat in on some of these team meetings. A social worker and a nurse talked over a case and decided they needed to make a home visit together; a doctor suggested a medication change; the various members of the group compared notes on one patient’s hospitalization while discussing whether another’s 911 call might have been averted. Strikingly, patients were presented not as bundles of syndromes—as medical charts—but as having personal goals, such as making a trip or getting back on their feet. The team tries to think about meeting patients’ goals rather than performing procedures. An advantage of the multidisciplinary approach is that over time, as clients’ conditions change, the group can recalibrate the mix of services and providers, to avoid jarring transitions. “Once in aim, always in aim,” one coordinator told a patient’s family. Over several years, a person might move from independence and occasional social-worker visits to hospice care and finally death, all within aim, and mostly at home.

One recent morning, while I was waiting at Sutter to accompany a nurse and a social worker on a home visit, the phone rang. It was a panicked caregiver whose charge had rectal bleeding. A case manager alerted the patient’s regular nurse so that she could make a visit right away, almost certainly averting a 911 call, and possibly an ambulance/ER/hospitalization ordeal. Later, in Washington, D.C., accompanying George Taler on house calls, I met a 92-year-old man afflicted with hypertension, blindness, gout, and diabetes, who had been in and out of the hospital before entering Washington Hospital Center’s home-care program in 2007, and who has not been back since—a fact that pleased him. (“I hate the hospital.”) I also met a 75-year-old woman who had recently had a massive stroke; her daughter said Taler’s program had averted at least two ambulance calls since then.

Sutter figures that the program, by keeping patients out of the hospital whenever possible, saves Medicare upwards of $2,000 a month on each patient, maybe more. The VA, for its part, says its program reduces hospital days for its patients by more than a third and reduces combined costs to the VA and Medicare by about 13 percent.

But now we come to the business model, which has been problematic. For doctors, nurses, health systems, and insurers, providing in-home service costs money. Medicare pays for hospitalization, but it does not pay for much by way of in-home care, or for social workers, or for time spent coordinating complex cases and traveling to homes and talking with caregivers. Where in-home primary care has existed, it has tended to be a foundation-funded experiment, or a charitable project, or part of a vertically integrated system like the VA, which can capture any savings. The home-care program at Washington Hospital Center runs at a 30 percent loss. Meanwhile, hospitals lose “heads in beds,” and therefore revenue. Medicare—which is to say, taxpayers—may save money, but it has no mechanism either to track savings or to pay providers and insurers for hospitalizations that do not happen.

This is why Brad Stuart was frustrated for so many years. He could see the path forward, and others could see it, but it was blocked. Today, though, he’s feeling optimistic. The path is clearing.

The Hospital Is No Place for the Elderly (1st of 3 installments)

https://www.theatlantic.com/magazine/archive/2013/12/the-home-remedy-for-old-age/354680/

Medical treatment for aging, chronically ill patients is costly and often ineffective. Can they get better care at home?

By JONATHAN RAUCH, DECEMBER 2013 ISSUE of HEALTH

It is 1976. Brad Stuart is in his third year of medical school at Stanford, doing his first clinical rotation. He is told to look at an elderly man with advanced lymphoma. The patient is feeble and near death, his bone marrow eviscerated by cancer. The supervising oncologist has ordered a course of chemotherapy using a very toxic investigational drug. Stuart knows enough to feel certain that the treatment will kill the patient, and he does not believe the patient understands this. Like a buck private challenging a colonel, he appeals the decision, but a panel of doctors declines to intervene. Well, Stuart thinks, if it must be done, I will do it myself. He mixes the drug and administers it. The patient says, “That hurts!” A few days later, the man’s bed is empty. What happened? He bled into his brain and died last night. Stuart leaves the room with his fists clenched.

To this day, he believes he killed the patient. “I walked out of that room and said, ‘There has got to be a better way than this,’ ” he told me recently. “I was appalled by how we care for—or, more accurately, fail to care about—people who are near the end of life. We literally treat them to death.”

Here is a puzzling fact: From 1970 until 2009, spending on health care in this country rose by more than 9 percent annually, creating fiscal havoc. But in 2009, 2010, and 2011, health-care spending increased by less than 4 percent a year. What explains the change? The recession surely had something to do with it. But several recent studies have found that the recession is not the whole story. One such study, by the Harvard University economists David Cutler and Nikhil Sahni, estimates that “structural changes” in our health-care system account for more than half of the slowdown.

In a sense, Brad Stuart is one of those changes. He is a leader in a growing movement advocating home-based primary care, which represents a fundamental change in the way we care for people who are chronically very ill. The idea is simple: rather than wait until people get sick and need hospitalization, you build a multidisciplinary team that visits them at home, coordinates health-related services, and tries to nip problems in the bud. For the past 15 years, at Sutter Health, a giant network of hospitals and doctors in Northern California, Stuart has devoted himself to developing home-based care for frail, elderly patients.

For years, many people in medicine have understood that late-life care for the chronically sick is not only expensive but also, much too often, ineffective and inhumane. For years, the system seemed impervious to change. Recently, however, health-care providers have begun to realize that the status quo is what Stuart calls a “burning platform”: a system that is too expensive and inefficient to hold. As a result, new home-based programs are finally reaching the market, such as one launched about five years ago at Sutter, called Advanced Illness Management. “It’s much more feasible now to make a program like this work than it was a few years ago,” Stuart told me. “There are a lot of new payment schemes in the pipeline that are going to make this kind of program much easier to support.”

This is good news. Generalizing from a small sample is always perilous, but if what is happening at Sutter is any indication, a more humane, effective, and affordable health-care system is closer than we think.

The problem that home-based primary care addresses has been well understood for years. Thanks to modern treatment, people commonly live into their 70s and 80s and even 90s, many of them with multiple chronic ailments. A single person might be diagnosed with, say, heart failure, arthritis, edema, obesity, diabetes, hearing or vision loss, dementia, and more. These people aren’t on death’s doorstep, but neither will they recover. Physically (and sometimes cognitively), they are frail. Joanne Lynn, the director of the Altarum Institute’s Center for Elder Care and Advanced Illness, says that this “frailty course,” a gradual and medically complicated downslide, was once exceptional but is now the likely path for half of today’s elders.

Seniors with five or more chronic conditions account for less than a fourth of Medicare’s beneficiaries but more than two-thirds of its spending—and they are the fastest-growing segment of the Medicare population. What to do with this burgeoning population of the frail elderly? Right now, when something goes wrong, the standard response is to call 911 or go to the emergency room. That leads to a revolving door of hospitalizations, each of them alarmingly expensive. More than a quarter of Medicare’s budget is spent on people in their last year of life, and much of that spending is attributable to hospitalization. “The dramatic increase in costs in the last month of life is largely driven by inpatient hospital stays,” Helen Adamopoulos recently reported on MedicareNewsGroup.com. “On average, Medicare spends $20,870 per beneficiary who dies while in the hospital.”

Hospitals are fine for people who need acute treatments like heart surgery. But they are very often a terrible place for the frail elderly. “Hospitals are hugely dangerous and inappropriately used,” says George Taler, a professor of geriatric medicine at Georgetown University and the director of long-term care at MedStar Washington Hospital Center. “They are a great place to be if you have no choice but to risk your life to get better.” For many, the worst place of all is the intensive-care unit, that alien planet where, according to a recent study in the Journal of the American Medical Association, 29 percent of Medicare beneficiaries wind up in their last month of life. “The focus appears to be on providing curative care in the acute hospital,” an accompanying editorial said, “regardless of the likelihood of benefit or preferences of patients.”

Taler can attest to one of the more peculiar elements of this situation, which is that a better model—namely, providing care and support at home—has been known and used for decades. Taler himself pioneered an interdisciplinary house-call model in Baltimore in 1980, and in 1999 he co-founded a home-based primary-care program at Washington Hospital Center that has served almost 3,000 people. In the 1970s, the Veterans Administration (now the Department of Veterans Affairs) began building a home-based primary-care program, which now operates out of nearly every VA medical center and serves more than 31,000 patients a day. This is not newfangled, untested stuff.

Should Patients With Dementia Be Able To Decline Spoon-Feeding?

Republished from: https://www.npr.org/sections/health-shots/2017/11/03/561393940/should-dementia-patients-be-able-to-decline-spoon-feeding

November 3, 2017

By JONEL ALECCIA
FROM Kaiser Health News

People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out: They could officially document their wishes to halt such interventions using advance directives.

Even patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity could write advance directives.

But caregivers and courts have rarely honored patients' wishes to refuse food and fluids offered by hand.

Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer's in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family's protests. A court ruling upheld the nursing home's action, saying that food is basic care that cannot be withdrawn.

Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer's disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.

To try to reverse this trend, a Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don't want to be spoon-fed at the end of life.

The group End of Life Washington, or EOLWA, which assists people using the state's 2009 Death with Dignity Act, recently posted a guide called Instructions for Oral Feeding and Drinking on its website.

Aimed at people with Alzheimer's disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There's another document explaining the do's and don'ts of using it.

The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, says Sally McLaughlin, executive director of EOLWA.

"We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they're being force-fed," McLaughlin says. "Many, many folks understand that as they stop eating, they would like no one else to feed them."

Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such "instructions" could be used essentially to starve the elderly or incapacitated.

"It really is troubling," says Stephen Drake, research analyst for the disability rights group Not Dead Yet.

He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.

"It really is a big game changer in the number of people whose lives can be ended when they're in vulnerable situations," Drake says. "In legal situations, this is a door-opener."

Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.

"What we are saying is that there are objective and somewhat subjective conditions in the future where you can say 'I'm giving you instructions now to help you interpret my wishes,' " says Bob Free, a Seattle lawyer who helped draft the document. "We have never really seen a standard form or advance directive to govern this."

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.

"If I accept food and drink (comfort feeding) when they're offered to me, I want them," the document states.

But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.

And the guidelines tell caregivers to respect those actions.

"No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink," the document states. It adds that the "reflexive opening" of the mouth should not be interpreted as consent to eating.

"We think this is a fairly objective test, which in real life will be clear," says Free.

The new guidelines aren't binding, legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

"The hard part about advance directives is even though you put your wishes there, it doesn't mean a medical professional will honor it, or that a facility will honor it," says Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying. But having a template should help make those wishes more clear.

Cases like Harris' and Bentley's horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, says she updated her living will herself within days of reading about Harris.

"I thought, 'Wow, I need to be much more specific,' " says Christensen, who appended notes saying she doesn't want assisted feeding if she can no longer feed herself. "I don't think anybody thinks about this until they're too far into it."

Free, 71, says he plans to fill out the new documents himself.

"It's been a personal desire of mine to have a dignified death," he says. "The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing."

Whether the decision to voluntarily stop eating and drinking can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025.

Paul Menzel, a bioethicist and professor emeritus at Pacific Lutheran University in Tacoma, Wash., says some people want to avoid the most debilitating stages of the disease. "It's not misery they're afraid of," he says. "They just don't want years of withering."

The End Of Life Washington document is a novel tool, but it may not go far enough, says Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she says. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.

Until now, however, there have been few models for articulating those desires.

"It certainly is an improvement over no previous mention of hand-feeding," Schwarz says. "Maybe this is where it must begin."

JoNel Aleccia covers aging and end-of-life care at Kaiser Health News. Reach her on Twitter at @JoNel_Aleccia.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

KHN's coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Caregiving Is Hard Enough. Isolation Can Make It Unbearable.

Many caregivers find themselves trapped at home, neglected by friends and family members who don’t understand how to help.

By Paula Span
THE NEW OLD AGE AUG. 4, 2017

For years, Marcy Sherman-Lewis went to a beauty salon in St. Joseph, Mo., every few weeks for a haircut and highlights.

It had become something of an ordeal to prepare her husband, Gene Lewis, for this outing; he has Alzheimer’s disease, at 79, and helping him shower and dress, insert hearing aids and climb into the car was a very slow process.

But she could no longer leave him at home alone. And once at the salon, “he just sat, watched TV, slept — didn’t bother anybody,” said Ms. Sherman-Lewis, 62. Her stylist kindly trimmed his hair, too.

Then last month, the salon owner took Ms. Sherman-Lewis aside. “Marcy, he makes my other patrons awfully uncomfortable,” she said.

“I was dumbfounded,” Ms. Sherman-Lewis said. “It’s O.K. for other people’s little grandchildren to be running around sometimes. What am I supposed to do, keep him in a crate in the car?”

Like so many caregivers, she has discovered that along with the abandoned career, the hands-on tasks, the medical scheduling, the insurance tussles and the disrupted sleep, she faces another trial: social isolation.

“It’s hurtful,” she said. “You need friends more than ever.”

But where are they? Betsey Brairton, 48, cares for her mother, Sue, in rural Olean, N.Y. The elder Ms. Brairton, 79, suffers from spinal stenosis, arthritis and lingering damage from a stroke, so she has limited mobility. “We hardly go anywhere, and nobody comes here,” said her daughter. When she does leave for an hour or two, she’s afraid to put down her cellphone.

Though a couple of friends occasionally invite her out for dinner, “I can’t commit to anything, in case my mom is having a bad day,” Ms. Brairton said. She has begun to worry that when she does spend time with others, her narrowing life leaves her with nothing interesting to say.

Those who work with caregivers know this phenomenon well, especially when the cared-for person has dementia, a particularly arduous responsibility.

“Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”

Sometimes, caregivers isolate themselves. Barbara Moscowitz, senior geriatric social worker at Massachusetts General Hospital, hears clients lament that with a loved one whose dementia-related behavior can be startling, venturing out in public creates more apprehension than pleasure.

“They say, ‘I’m exhausted trying to explain to people why she’s doing what she’s doing, why they shouldn’t be angry or afraid,’” Ms. Moscowitz said. “It’s just easier to stay home.”

Yet a habit of avoiding others — or watching them avoid you — collides with a growing body of research showing how damaging isolation and loneliness can be. They are associated with a host of ills, including heart disease and stroke. Among older people, isolation is linked to depression, even higher mortality. Lonely old people, Dutch researchers have found, are more apt to develop dementia.

We’ve long thought of these factors as dangers for the people being cared for. But they also imperil caregivers, who are often older adults as well.

Years of caring for his wife, now deceased, who had early onset Alzheimer’s, left Les Sperling, 65, so despondent that “I’d stay in my room in the dark and sleep all day,” he said. “I didn’t want to come out.”

Mr. Sperling, of Lake Worth, Fla., went into therapy and took antidepressants until he felt able to function again.

We know something about how to help caregivers feel less alone. Researchers have shown that even modest-sounding interventions can reduce their sense of isolation and improve their mental and physical health.

Mary Mittelman, director of the Alzheimer’s Disease and Related Dementias Family Support Program at NYU Langone Health, has been conducting such studies for years.

With federal and state grants, the program — involving several counseling sessions, followed by support groups and phone access to counselors as needed — has inspired others that have been adopted throughout New York and in several other states.

“The support is what leads to less stress, less depression, better health and delayed nursing-home admissions,” Dr. Mittelman said. Interestingly, her team has found that “instrumental support,” in which others actually help with tasks, has less impact than emotional support.

“Having someone outside who is paying attention and who cares is more important,” she said.

Other initiatives, like Savvy Caregiver and REACH, have demonstrated similar effectiveness. Because they are offered under various names in different states, Area Agencies on Aging can help besieged caregivers find free local programs. And since getting out of the house can be a struggle, program developers are also testing online versions.

Caregivers already gather in Facebook groups and on websites, but experts have mixed feelings about online chats and groups. “They provide anonymity, and that may permit more honesty,” said Dr. Wexler Sherman, the gerontologist. “Sometimes you need to vent at 2 a.m.”

”But we need skills,” she said. “Being a caregiver is a job.” Online, is the information passed along accurate and useful? Is there a trained, knowledgeable moderator?

“It’s important to have a leader to monitor and validate,” said Ms. Moscowitz, who leads several support groups for Mass General employees and for community members. Besides, “there’s nothing like a real person to hug you.”

On other fronts, we’re seeing more efforts to provide convivial social and cultural events for both people with dementia and their caregivers: Memory Cafes, museum programs, choruses. The Dementia Friendly America campaign aims to make whole communities — including police forces, churches, restaurants and hair salons — more knowledgeable and accommodating.

Individuals can also play a role. It’s too easy to let caregiving friends slip off our radar with a general call-if-you-need-anything.

“Don’t put the pressure on the caregiver to tell you what to do,” Ms. Moscowitz said. She suggests asking what would be helpful, making a list of specific tasks and parceling out assignments.

“Don’t invite me for lunch — you know I can’t go,” Ms. Sherman-Lewis said. “Just bring a pizza and a bottle of wine and come by.”

Though tangible help counts — and let’s acknowledge that an aging country can’t rely solely on families, friends and volunteers to provide everything dependent elders need, however well supported they are — so do regular texts, calls or visits. They help keep caregivers from feeling invisible and forgotten.

Counselors in the NYU program once had the friendly inspiration, since they kept caregivers’ information in their database, to send clients a card on their birthdays.

It sounds sweet, if trivial. But often, Dr. Mittelman said, “they’d call up, so grateful, and say, ‘You’re the only one who remembered.’”

Reprinted from: https://www.nytimes.com/2017/08/04/health/caregiving-alzheimers-isolation.html?smprod=nytcore-ipad&smid=nytcore-ipad-share

Elder Care and Assisted Living: Who Will Care for You? (Part III)

Protections Consumers Need

Consumer Reports recommends these 6 steps to improve care in assisted living.

It’s clear that the assisted living industry needs to evolve to manage the increasing health needs of the population it aims to attract. In that vein, more federal and state regulatory oversight is urgently needed to protect residents and their families. CR believes policy makers should better protect consumers of assisted living facilities by doing the following:

1.       Define Assisted Living and Levels of Care
The term “assisted living” can describe anything from a facility that merely offers room and board to one that provides full-time nursing care. As a result, confused consumers can end up paying for services they don’t need or, worse, not getting the care they do need. Policy makers should establish and clearly define level-of-care classifications, and facilities should be required to use the classifications to communicate the assisted living services they offer.

2.       Set Staffing and Training Standards
Staff training and qualification requirements, and minimum per-resident staffing levels, should be set according to level-of-care classifications. Qualified, licensed medical staff should monitor the overall health of residents and administration of medications. Special staffing requirements should be established for residents with high-level care requirements, including residents with dementia.

3.       Establish Resident Rights
Policy makers should establish a comprehensive Bill of Rights to ensure some basic rights for residents, including the right to make everyday decisions; receive visitors at any time; refuse treatment; access and control their own money; question and object to facility practices and policies; make formal complaints to administrators and regulators; and bring lawsuits seeking court orders to stop illegal activities and violations and to compensate residents for rights, standards, or contractual violations (a right that should prevail even when residents have signed forced-arbitration clauses, which should be restricted).

4.       Support Aging in Place
Policy makers should narrow the number of allowable reasons for evicting residents. Reasonable accommodations should be made, when possible, to allow a resident to remain in a facility, and all services allowable under a resident’s level-of-care designation should be made available. If a resident who initially paid privately goes on Medicaid and resides in a Medicaid-certified facility, that facility should be required to accept Medicaid reimbursement for that resident.

5.       Enforce Regulations
Policy makers should establish rules requiring inspections tied to levels of care. Penalties for violations should be strengthened and applied on a per-violation and per-day basis.

6.       Make Price and Quality Information Transparent
Policy makers should establish a system that enables consumers to compare costs, features, and services across facilities and types of facilities, including information related to facility inspections and disciplinary actions.

Editor’s Note: This article also appeared in the October 2017 issue of Consumer Reports magazine.

Blog reprinted from article called: Elder Care and Assisted Living: Who Will Care for You? By Penelope Wang, August 31, 2017, https://www.consumerreports.org/elder-care/elder-care-and-assisted-living-who-will-care-for-you/

Elder Care and Assisted Living: Who Will Care for You? (Part II)

10 Helpful Resources

Finding information about assisted living residences in your area will require some digging. Online resources can speed your search. You can also enlist expert help that can save time and avoid costly mistakes.

For an Overview of Senior Housing Options: AARP
Comprehensive information on independent living and nursing homes, as well as assisted living.

To Start Your Search for an Assisted Living Facility: Caring.com
Click Assisted Living, then enter your ZIP code to find residences; listings include communities and services with current state licensing.

If You’re in a Hurry to Find a Residence: A Place for Mom
This referral service is free to consumers; providers pay the site a fee if you move in.

To Get Help From an Aging-Life-Care Expert: Aging Life Care Association
Click on Find an Aging Life Care Expert to search in your state.

To Check the Assisted Living Regulations in Your State: National Center for Assisted Living
Go to Advocacy, then State Regulations to see rules for every state.

A Starting Point for Checking Assisted Living Violations: A Place for Mom
Click on your state to find out how to obtain inspection reports.

To Contact Your State Long-Term-Care Ombudsman
National Long-term Care Ombudsman Resource Center

Use the map tool to locate links for your state.

To Get a Legal Review of Your Contract
National Academy of Elder Law Attorneys

For the Basics on Long-Term-Care Benefits
LongTermCare.gov
This federal website provides an overview of long-term care, as well as links to Medicare and Medicaid information.

For First-Person Insight Into Assisted Living
The Thin Edge of Dignity
Dick Weinman, a retired professor of broadcast communications at Oregon State University, became wheelchair-bound in 2005 after a car crash. In this short documentary, he describes his personal experience with assisted living and how he manages to stay active.

Blog reprinted from article called: Elder Care and Assisted Living: Who Will Care for You? By Penelope Wang, August 31, 2017, https://www.consumerreports.org/elder-care/elder-care-and-assisted-living-who-will-care-for-you/