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/

Elder Care and Assisted Living - Who Will Care For You? Part 1

Making the Right Moves

Despite these challenges, families can find high-quality assisted living facilities. But start your search well before you or your parent actually needs care. If your parent’s health declines, assisted living might not even be an option, says Deborah Fins, an aging-life-care expert in Worcester, Mass. Many facilities will not take people who are wheelchair-bound or need help with multiple chronic conditions, but some allow residents to stay if they become more infirm. To help you target your search, here are four key questions to ask:

1. What Kind of Help Will the Resident Need?

Perhaps your parent no longer drives and is becoming socially isolated. Or he or she can’t manage stairs or forgets to turn off the oven. For seniors who need moderate amounts of support, assisted living could be the smart choice. Assisted living is working well for Sharon Koenig, 76, who lived alone for two years after her husband died. “I kept waiting for him to come in the door,” Koenig says. She also was having trouble tracking her medications. With help from an aging-life-care expert, who is familiar with local facilities, Koenig looked at several senior residences, including a small nursing home.

Unlike some of the other places, Regal Palms in nearby Largo, Fla., a large facility with several levels of care, offered a varied menu of activities. Last October, Koenig moved to the assisted living section, into a two-bedroom apartment that has space for her 50-gallon aquarium. She gets help with medication but still does her own laundry. “Some people might be afraid of a big place, but I think it’s better,” she says. “There’s always someone to have dinner with.”

Smart move: Make sure your family member has a medical evaluation from a primary care doctor—or a specialist, if your parent has an illness—to understand the level of care required, as well as how those needs might change. For more perspective, hire an aging-life-care expert to help point you to appropriate residences. “Given the wide variation in the types of services provided by assisted living communities, it’s well worth spending the several hundred dollars for a professional care manager,” says Stephen Maag, a director at LeadingAge, an association of nonprofit senior-living groups.

2. How Good Is the Quality of Care?

Make sure the residence is licensed to provide assisted living, to ensure that there’s at least a minimum level of oversight. Take a close look at the residence’s inspection record, which indicates how often it has been checked or whether it has had complaints. (See “10 Helpful Resources,” below.) Some states, such as Florida and California, maintain consumer-friendly assisted living websites that list inspection records and regulatory actions. But some states do not, or they fail to update them. You can also ask your state ombudsman’s office about a facility’s complaint record.

In the end, the best information about quality of care could come from people who visit facility residents, as well as from the residents themselves. Ask the residents specifics about the care—whether meds are delivered on time, for example—and how management responds to complaints, suggests Liz Barlowe, an aging-life-care expert in Seminole, Fla.

Try to make multiple visits to the residence—including at meal time and on weekends. Most facilities will welcome you even if you don’t have an appointment. Talk to residents, and see whether the staffers seem happy or appear overworked.

Smart move: Ask how the residence would handle a fall, a common occurrence. Would a nurse be on hand to evaluate your parent, or would he be sent to the emergency room? And ask whether “the facility provides an on-site clinician or medical staff that can help the resident avoid the expense and health risk of an unnecessary trip to the ER or a hospitalization,” says Alan Kronhaus, M.D., CEO of Doctors Making House Calls, a North Carolina medical group that provides on-site healthcare to assisted living residents.

3. What Are the Real Costs of Care?

Ask for a written list of the fees, and make sure the information is included in your contract. (See “Putting Your Contract Under the Microscope.”) Some facilities have all-in costs that cover room, board, and care for a particular level of assistance, and others have point systems or charge à la carte. (See “11 Ways to Afford the Care You Need.”)

Be sure to get clear information about the circumstances that could trigger higher or additional charges and how the facility assesses those fees, says Patty Ducayet, state long-term-care ombudsman for Texas. What would it cost to have your dad driven to a doctor 10 miles away vs. 5 miles away? Is it okay to hire private aides?

Smart move: Ask about the policy for lowering fees. Say your mom requires a higher level of care for a week to recover from a hospital stay. How quickly can the fees be cut when she has recovered? “Bumping down the charges tends to take longer than bumping up,” says Karen Jones, a state long-term-care ombudsman in San Luis Obispo, Calif.

4. Can Your Parent Be Kicked Out?

Involuntary discharges rank among the top complaints in most states, according to the National Consumer Voice survey. Discharges are usually triggered by lack of payment or care needs that exceed the facility’s capacity to provide the services. The discharge terms should be detailed in the contract, as well as the required amount of notice you’ll receive, which is typically 30 days.

For Jill Goldberg, the possibility of her mom’s discharge was unexpected. Her mom, Sylvia Wenig, 94, was living in Brookdale West Boynton Beach in Boynton Beach, Fla. “We’d been getting great care there,” says Goldberg, 61, who lives near Boston. But after a hospitalization, Wenig lost her mobility and was not allowed to return to the facility. Goldberg asked if her mother could return for a week or two to allow time to find another facility, but Brookdale refused.

Goldberg says she persuaded the hospital to let her mother stay a few more days, and with help from an aging-life-care expert, she moved Wenig to a nursing home. Says Brookdale spokesman James Hauge, “For residents who require more care than the community is able to provide, we inform them of other care options and actively help them find a community that can meet their new care needs.”

Smart move: Don’t rely on the marketing director’s assurances that your parent will be able to age in place. “Verbal agreements are nearly impossible to prove,” says Jones, who recommends getting the promises in writing. With assisted living, it’s better to know exactly where you stand.

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/

Living with Alzheimer's, As a Patient and a Caregiver

Reprinted from: http://www.wnyc.org/story/alzheimers/
Jul 23, 2015

More than five million Americans suffer from Alzheimer's disease, and according to the Alzheimer's Association, and 15.5 million Americans are currently caring for them.

A new drug might provide some hope for those showing very early symptoms of the disease. This week at the annual Alzheimer’s Association International Conference in Washington, the pharmaceutical company Eli Lilly released new data on a drug that seems to prevent the buildup of amyloid plaques in the brain—the type of plaques many doctors believe are tied to Alzheimer's.

Scientists say it's much too early to tell if the drug will make it to the market, but for those who care for Alzheimer's patients, the potential treatment offers at least a glimmer of hope for a disease with very few prospective cures on the horizon.

Dr. David Kramer was diagnosed with Alzheimer's in 2012 at the age of 56. He retired from his job as an emergency room physician and currently lives with his wife and caregiver in Florida. He says he’s cautiously optimistic about the new data from Eli Lilly.

“I have some preliminary optimism with the results, but I had an opportunity to read the paper on the study that was discussed and presented,” says Kramer. “The data is very, very preliminary, and there’s not any clear evidence from what I can see that this will have any long-term effect. But it’s way too soon to tell.”

Like Kramer, Meryl Comer is also watching with some hope. She has been an Alzheimer's caregiver for 20 years—her husband, a former research physician at the National Institutes of Health, was diagnosed with early-onset Alzheimer's at the age of 57.

Comer, who is also a journalist and author of the New York Times bestseller, “Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer's,” cares for her husband along with her mother, who also has Alzheimer’s disease.

“It’s promising, but premature, and people tend to read the headlines only—we’ll receive calls saying, ‘Good news, your problems are over,” she says. “They don’t understand the complexities of the disease. It’s easier to get to Mars than it is to find a disease-modifying therapy for a very complex issue like Alzheimer’s.”

Comer applauds pharmaceutical companies that are working to find treatments and cures for the disease, despite the many false starts and failed attempts that have already been made.

“We went through a phase where, after these failed trials, we were afraid that we would be abandoned at a time when the numbers are growing exponentially—44 million globally are suffering from the disease,” she says. “The other new hopeful part is there are 13 new therapeutic compounds, and four or five are disease modifying therapies. I stay close to the science, as do all advocates, because we are desperate for a disease-modifying therapy. Just give us five more years of quality of life—think what that might mean to an individual.”

Despite the excitement around the findings presented by Eli Lilly, the hope of a treatment for an Alzheimer’s is just that—a hope.

“While these may have potential, even after the phase three trials are done, you still do not know if the effects will be long lasting—whether the slowdown in the progression of the disease, if it actually does occur, will be consistent overtime,” Kramer says. “There’s a lot to learn.”

Even with all the uncertainty, Kramer says that he does not feel powerless in the face of his diagnosis. 

“I feel that it’s important for me to enjoy the time that I have now,” he says. “My wife and I focus on doing everything that we can now and enjoying life. There is a definite benefit in having an early diagnosis, as I was fortunate to have. I can then say, ‘Alright, I know what I’ve got, but I’m doing well now.’ As long as I can continue to do well and live well with the disease, I plan on doing that.”

But not all are so lucky. Comer says that many doctors are reluctant to give an early diagnosis of Alzheimer’s because there is no cure. She says that her husband was misdiagnosed for four years, with doctors saying that her husband’s condition might have been Lyme’s disease or depression.

“It’s insulting to families who are lost and confounded by behaviors, because behaviors are the first things that appear around the disease,” she says. “We have to [call for] an early diagnosis—give us a chance to live in the moment with our loved ones, don’t decide for us.”

An early diagnosis, Comer argues, helps families and those suffering with the disease to live fully, especially since the disease can progress at different speeds.

“Often you’re moving from crisis to crisis,” she says. “You really try to look at the successes—that he had a good day. The caregiver actually forgets who they are because you are so focused on protecting the dignity of the loved one who has the disease and of giving them their last ‘hurrah.’ That takes tremendous energy.”

Comer adds that this is the “biggest women’s issue since breast cancer” since women often outlive men, and the majority of caregivers are women, who are also much more likely to give up their careers for a loved one in need.

“I interact a lot with many, many people with dementia, and I tell you that the primary concern that all of us have is about the health and welfare of our caregivers,” Kramer adds. “I’m much more concerned about the impact of this disease on my wife than I am on myself.”

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