11/18/17

For Patients With Heart Failure, Little Guidance as Death Nears

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Americans are living longer with heart disease, managing it as a chronic condition. But there are few rules for these patients as they near the end of life.

Ricky Hurst, whose heart is failing, was told by doctors to get his affairs in order as his condition worsened. More patients like him are living longer with heart failure, but there are no widely accepted guidelines for care as they near death.

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Ricky Hurst’s doctors told him last year that there was nothing more they could do. His heart was failing and he should get his affairs in order. The end was coming.

His family gathered. He spoke to his pastor and resigned himself to death. “If it was meant to be, it was meant to be,” he said.

But. Mr. Hurst, 56, a former ranger and school football coach in Jackson, Mich., is still alive, although his heart continues to weaken. And patients like him are raising a new dilemma for doctors.

Heart disease once killed ruthlessly and quickly; patients like Mr. Hurst succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.

Their disease at that point is called heart failure — their weakened heart cannot pump enough blood to supply the body’s needs. The number of Americans with heart failure increased to 6.5 million in 2011-2014 from 5.7 million in 2009-2012, according to the American Heart Association.

More than 10 percent of those over age 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rate from heart attacks is falling, the figure for heart failure is rising.

Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.

Mr. Hurst carries a battery-powered and surgically implanted heart pump.

That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.

A fifth of heart patients with defibrillators get shocked by them in the last few weeks of life, and 8 percent get shocked minutes before dying. Most patients are never told that they can ask that the defibrillators be turned off.

“Getting shocks at the end of life is not really helping patients live longer or better,” said Dr. Larry Allen, a heart failure specialist at the University of Colorado and an author of the study.

“We shouldn’t have a single one of these cases happening,” said Dr. Haider Warraich, a cardiology fellow at Duke University and first author of the study.

Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined by 70 percent in the past 50 years. People have heart attacks later in life than they used to, are more likely to survive them, and often live for years afterward with few or no symptoms.

“We are very proud” of that progress, said Dr. Patrice Desvigne-Nickens, a medical officer at the National Heart, Lung and Blood Institute.

Still, she added, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure.

“Everyone is uncomfortable with end-of-life discussions,” she said. “The field of cancer may be ahead of us. We should learn from looking at their example.”

But cardiologists thrive on the dramatic saving of lives, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink.

End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.

The very nature of end-stage heart failure makes it all the more difficult to prepare.

“Very few patients understand the trajectory of the disease,” said Dr. Lynne Warner Stevenson, a heart failure specialist at Vanderbilt University. The path has peaks and valleys, but as the patient declines, each peak is a little lower than the one before.

And often doctors do not tell patients what to expect.

“Unfortunately, when you have patients with a chronic illness like heart failure, everyone thinks someone else will talk about it,” Dr. Stevenson said. “Too often, no one takes ownership of the last stage of the journey with the patient.”

Dr. Ellen Hummel of the University of Michigan, one of a small number of doctors specializing in cardiology palliative care, said the typical patient with cancer will usually experience a “fairly predictable” decline.

“They will be less able to take care of themselves,” she said. “They will be more symptomatic and come back to the hospital more frequently. And once this starts, it will probably continue until they die. Most people can see the end coming.”

But patients with end-stage heart failure are more likely to have wild swings, Dr. Hummel said, veering from feeling better to being terribly ill.

“It is confusing to both the patient and provider. Are they actually dying, or can we rescue them from a particular episode of worsening?”

Dr. Harlan Krumholz, a cardiologist at Yale University, agreed: “The issue is knowing who is really at the end of life.” For patients with heart failure, seesawing between good periods and bad, it can be very difficult to make the call.

Dr. Allen recently discussed all this with a patient, Ed Harvey.

Mr. Harvey, 75, has an implanted defibrillator, and his heart is weakening, pumping progressively less blood. Dr. Allen gave him medications that helped for a while, but, Dr. Allen said, “we have maxed out on what can be done.”

He can’t say with any certainty how long Mr. Harvey has. But now is the time, Dr. Allen told him, to talk about the end of life.

Mr. Harvey still feels pretty good, but “when you have congestive heart failure and it is not getting any better, you know that day is going to come,” he said.

He has been living with heart failure for more than a decade, and fears becoming a burden as his heart gets worse. It is now so weak that the only medical option left is an implantable pump. He knows that soon he will need full-time care.

“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”

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11/17/17

What is Respite Care?

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By SeniorAdvisor.com Staff

The essential meaning of respite care is to support the caregivers via temporary institutional care for their loved ones. Respite care can be provided to a dependent, disabled, or elderly person. It is also known as short-term care and gives you (the caregiver) the opportunity to get a break from your caregiving role while ensuring your loved one stays on track with their normal routine.

Respite care may be provided in short hourly increments, days, or even longer periods of time and also depends on your loved one’s specific needs, your own needs, as well as on the available services in your area and their price points.

Benefits of Respite Care

Respite care enables the caregiver to continue with his or her caring role for a longer period of time and help prevent burnout. It is designed to help families, by giving the caregiver time to slow down and focus on one’s physical and mental health. It may also be given informally by family members, friends, neighbors, or by formal services.

Some studies have shown that respite care helps sustain caregivers’ health and well being, reduces the possibility of neglect and abuse, delays, and avoids out-of-home placements. An additional benefit of respite care is the fact that it helps sustain marriages by reducing the likelihood of divorce.
Types of Respite Care

In-home respite care provides caregiving to the individual at their home.

Attends to the senior’s fundamental self help needs, usually provided by family members.
Assists the family on enabling the senior with development activities to be at home.
Relieves family members from the constant and heavy responsibility of providing care.
Gives appropriate supervision and care to protect the senior’s safety if a family member is not present.

Adult day center respite care provides daily care via licensed facilities and is predominantly used by caregivers who work during the day and need a place for their loved ones to socialize and receive care.

Specialized facility respite care provides highly effective and specialized care (such as for dementia or Alzheimer’s) at a licensed facility.

Emergency respite care provides help and care on an emergency basis. Many home care agencies, help centers, adult day care centers and respite care facilities offer this service.

Therapeutic respite care provides services for seniors and adults, mostly during business hours, but sometimes 24 hours a day. Therapeutic respite care facilities usually care for designated clients only and are not related to the family support centers.

Informal respite care is care given by a family member, relative, friend, or volunteer. It serves to allow the caregiver a brief break to run errands or simply be removed from the current caregiving role. This form of care may also be used during special events.

If you are a primary caregiver, take time to ensure that you are also mentally, emotionally, and physically healthy. Although getting respite care may feel like a daunting task plagued with guilt, it can be a good option to temporarily remove yourself from the situation to regain a renewed sense of well-being for you and your loved one.

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11/16/17

The fear that dare not speak its name:

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How language plays a role in the assisted dying debate

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Arguments in the “euthanasia debate” (as it is colloquially referred to in Australia) hinge in part on the language used to describe “death”.

The inevitability and permanence of death make it a taboo fraught with fears (such as fear of losing loved ones, fear of the afterlife, fear of what happens to the body after death).

When it comes to fear, politicians are slick verbal smugglers, sneaking messages under our noses. Conservative pollsters found “global warming” was scary so they gave us “climate change”. Richard Nixon knew white voters afraid of minorities would respond well to “law and order”.

Those involved in the “euthanasia debate” draw on similar tactics. Are we talking about “assisted dying” – as the name of the bill suggests – or are we talking about “assisted suicide”? Does it even matter?

Debating a ‘good death’ in the Victorian parliament

Three terms loomed large a few weeks ago in the debate in parliament: “euthanasia”, “assisted dying” and “assisted suicide”.

Those who supported the Voluntary Assisted Dying (VAD) Bill tended to use the phrase “assisted dying” throughout the debate. A preliminary token count (factoring out references to the name of the bill) shows 678 references to “assisted dying” from October 17-19. The lion’s share of these were made by the bill’s proponents.

Conversely, those who opposed the bill favoured the terms “euthanasia” and “assisted suicide”. There were 264 references to “euthanasia” and 205 to “assisted suicide” across the three days. These terms were most often used by the bill’s opponents.

In fact, the bill’s opponents took issue with its euphemistic tone. Deputy Premier James Merlino argued in the debate that “language is important” and pointed out the reticence of the bill’s proponents to use “confronting words” like “euthanasia” or “suicide”.

Also during the debate, opponents made multiple references to comedian/actor Liz Carr and her show Assisted Suicide: The Musical.

Liberal MP Robert Clark highlighted one particular scene in Carr’s play in which societies engaging in euthanasia seek the most “palatable term” for what they do. These societies acknowledge, in Clark’s words, “to call it by its true name would be a big setback for their cause”.

Why do these words matter to politicians? Should they matter to us?

To name the tiger or to not name the tiger?

Cultures avoid naming the things they fear the most.

The Batek, a nomadic group inhabiting peninsular Malaysia’s tropical forests, fear and revere tigers. Consequently, hunters often use avoidance terms like “animal of the forest” or the mocking “smelly paws” to discuss them.

Modern English speakers linguistically dance around the concept of death with the same care and mocking humour as the Batek do the tiger. Among other things, we frame death in terms of “rest” (“rest in peace”), “loss” (for example, “my condolences on your loss”) and “a journey” for “the departed” (“pass away” originally referred to the soul’s “departure” from the body for the “journey” to heaven or hell).

We can also, with an irreverent nod to dark humour and idiomatic expression, “buy the farm”, “push up daisies” or “kick the bucket”. These seemingly frivolous statements can often have dark origins. For instance, “kick the bucket” is likely either a reference to suicide by hanging or an old way of killing of pigs (in both cases, the living thing is tied to a beam, and a bucket kicked from under them).

Such dark humour perhaps enables us to cope with death by downgrading its significance.

Returning to the current debate, opponents of Victoria’s VAD bill most commonly use the terms “euthanasia” and “assisted suicide”. They are sometimes used interchangeably, but also separately, as they have differing meanings (the former entails more direct involvement of a doctor or another person).

The Oxford English Dictionary (OED) traces the earliest uses of “euthanasia” to the mid-17th century, deriving from the Greek eu- “good or well” and thanatos “death”. It is worth noting in light of the current debate that this eu- also appears in “euphemism” – loosely, “good speaking”.

Euthanasia originally had this general sense of “good death” until the 18th and 19th centuries when it came to signify the “means” or “actions” to bring on a good death.

Words associated with taboo topics often taken on negative connotations, and euthanasia is no exception. We see similar processes at work with “coffin”, which once meant a “small basket” in French, and was originally a reference to the container in which we place our dead.

Opponents of the VAD bill also draw on the negative connotations of “assisted suicide”. Suicides are, of course, highly stigmatised. Moreover, the use of “suicide” conjures up a series of other negative words containing the element –cide (from the Latin “slayer of”), including “homicide” and “fratricide”.

Many of these –cide words are first noted in English in the 15th century but “suicide” (from the Latin suī “of oneself”) did not appear until the 18th century. Before this, the act was known, among other things, as “self-destruction”, “self-homicide”, “self-murder” and “self-slaughter”. The OED notes the first appearance of “assisted suicide” in 1976.

Proponents of the VAD bill favour “assisted dying”, which, of course, is in the name of the bill itself. The OED shows the first appearance of “assisted dying” in 1988 in the British magazine The Contemporary Review. It appears in an article referencing Sigmund Freud’s request that his life end early rather than suffer unduly from his inoperable cancer.

The term “dying” is arguably the more neutral of the two terms (though how accurately it represents the act will relate to one’s philosophical or religious viewpoint).

While we are squeamish about the concept of death, we may be coming to terms with the use of the word “death” itself. Linguists Keith Allan and Kate Burridge studied obituaries and “In Memoriam” notices in the early 2000s, and found only a single of these contained the verb “die” or the noun “death”.

However, last year PhD scholar Pawel Migut studied online obituaries and found “died” to be the most common reference to the process in 12 US states (“passed away” seemingly remains the most common euphemism across the US on the whole).

Naming the tiger or slick political strategy?

Politicians’ choices to use “euthanasia” and “assisted suicide” or “assisted dying” have demonstrable political impact, as evidenced by a 2013 Gallup poll.

This poll found that 70% of Americans supported ending “a patient’s life by some painless means” when they were suffering from an incurable disease. However, support dropped to 51% when Americans were asked whether they supported a request to “assist the patient to commit suicide.”

So then, it is worth noting that the selection of “assisted dying” or “assisted suicide” might reflect our pollies’ attitudes. But it just as equally may be an effective political act, playing to our fears of death, and those words we use to name, or either to not name, our cultural tiger.

Complete Article HERE!

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11/15/17

What It’s Like to Learn You’re Going to Die

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Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

Nessa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisisWhether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

Complete Article HERE!

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11/13/17

What Happens Inside a Dying Mind?

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What makes a person believe that he visited heaven? Is there a way for science to get at what’s really going on? In the April 2015 issue of the Atlantic, Gideon Lichfield mounts an empirical investigation of near-death experiences, concluding that more rigorous research must be pursued to understand what happens in the minds of “experiencers,” as they call themselves. One thing is abundantly clear, though. Near-death experiences are pivotal events in people’s lives. “It’s a catalyst for growth on many different levels—psychologically, emotionally, maybe even physiologically,” says Mitch Liester, a psychiatrist.


 
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11/12/17

Learning To Advance The Positives Of Aging

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By Judith Graham

What can be done about negative stereotypes that portray older adults as out-of-touch, useless, feeble, incompetent, pitiful and irrelevant?

From late-night TV comedy shows where supposedly clueless older people are the butt of jokes to ads for anti-aging creams equating youth with beauty and wrinkles with decay, harsh and unflattering images shape assumptions about aging. Although people may hope for good health and happiness, in practice they tend to believe that growing older involves deterioration and decline, according to reports from the Reframing Aging Initiative.

Dismal expectations can become self-fulfilling as people start experiencing changes associated with growing older — aching knees or problems with hearing, for instance. If a person has internalized negative stereotypes, his confidence may be eroded, stress responses activated, motivation diminished (“I’m old, and it’s too late to change things”) and a sense of efficacy (“I can do that”) impaired.

Health often suffers as a result, according to studies showing that older adults who hold negative stereotypes tend to walk slowly, experience memory problems and recover less fully from a fall or fracture, among other ramifications. By contrast, seniors whose view of aging is primarily positive live 7.5 years longer.

Can positive images of aging be enhanced and the effects of negative stereotypes reduced? At a recent meeting of the National Academies of Sciences’ Forum on Aging, Disability and Independence, experts embraced this goal and offered several suggestions for how it can be advanced:

Become aware of implicit biases. Implicit biases are automatic, unexamined thoughts that reside below the level of consciousness. An example: the sight of an older person using a cane might trigger associations with “dependency” and “incompetence” — negative biases.

Forum attendee Dr. Charlotte Yeh, chief medical officer for AARP Services Inc., spoke of her experience after being struck by a car and undergoing a lengthy, painful process of rehabilitation. Limping and using a cane, she routinely found strangers treating her as if she were helpless.

“I would come home feeling terrible about myself,” she said. Decorating her cane with ribbons and flowers turned things around. “People were like ‘Oh, my God that’s so cool,’” said Yeh, who noted that the decorations evoked the positivity associated with creativity instead of the negativity associated with disability.

Implicit biases can be difficult to discover, insofar as they coexist with explicit thoughts that seem to contradict them. For example, implicitly, someone may feel “being old is terrible” while explicitly that person may think: “We need to do more, as a society, to value older people.” Yet this kind of conflict may go unrecognized.

To identify implicit bias, pay attention to your automatic responses. If you find yourself flinching at the sight of wrinkles when you look in the bathroom mirror, for instance, acknowledge this reaction and then ask yourself, “Why is this upsetting?”

Use strategies to challenge biases. Patricia Devine, a professor of psychology at the University of Wisconsin-Madison who studies ways to reduce racial prejudice, calls this “tuning in” to habits of mind that usually go unexamined.

Resolving to change these habits isn’t enough, she said, at the NAS forum’s gathering in New York City: “You need strategies.” Her research shows that five strategies are effective:

  • Replace stereotypes. This entails becoming aware of and then altering responses informed by stereotypes. Instead of assuming a senior with a cane needs your help, for instance, you might ask, “Would you like assistance?” — a question that respects an individual’s autonomy.
  • Embrace new images. This involves thinking about people who don’t fit the stereotype you’ve acknowledged. This could be a group of people (older athletes), a famous person (TV producer Norman Lear, now 95, who just sold a show on aging to NBC) or someone you know (a cherished older friend).
  • Individualize it. The more we know about people, the less we’re likely to think of them as a group characterized by stereotypes. Delve into specifics. What unique challenges does an older person face? How does she cope day to day?
  • Switch perspectives. This involves imagining yourself as a member of the group you’ve been stereotyping. What would it be like if strangers patronized you and called you “sweetie” or “dear,” for example?
  • Make contact. Interact with the people you’ve been stereotyping. Go visit and talk with that friend who’s now living in a retirement community.

Devine’s research hasn’t looked specifically at older adults; the examples above come from other sources. But she’s optimistic that the basic lesson she’s learned, “prejudice is a habit that can be broken,” applies nonetheless.

Emphasize the positive. Another strategy — strengthening implicit positive stereotypes — comes from Becca Levy, a professor of epidemiology and psychology at Yale University and a leading researcher in this field.

In a 2016 study, she and several colleagues demonstrated that exposing older adults to subliminal positive messages about aging several times over the course of a month improved their mobility and balance — crucial measures of physical function.

The messages were embedded in word blocks that flashed quickly across a computer screen, including descriptors such as wise, creative, spry and fit. The weekly sessions were about 15 minutes long, proving that even a relatively short exposure to positive images of aging can make a difference.

At the forum, Levy noted that 196 countries across the world have committed to support the World Health Organization’s fledgling campaign to end ageism — discrimination against people simply because they are old. Bolstering positive images of aging and countering the effect of negative stereotypes needs to be a central part of that endeavor, she remarked. It’s also something older adults can do, individually, by choosing to focus on what’s going well in their lives rather than what’s going wrong.

Claim a seat at the table. “Nothing about us without us” is a clarion call of disability activists, who have demanded that their right to participate fully in society be recognized and made possible by adequate accommodations such as ramps that allow people in wheelchairs to enter public buildings.

So far, however, seniors haven’t similarly insisted on inclusion, making it easier to overlook the ways in which they’re marginalized.

At the forum, Kathy Greenlee, vice president of aging and health policy at the Center for Practical Bioethics in Kansas City and formerly assistant secretary for aging in the U.S. Department of Health and Human Services, called for a new wave of advocacy by and for seniors, saying, “We need more older people talking publicly about themselves and their lives.”

“Everybody is battling aging by themselves, reinforcing the notion that how someone ages is that individual’s responsibility” rather than a collective responsibility, she explained.

Underscoring Greenlee’s point, the forum didn’t feature any older adult speakers discussing their experiences with aging and disability.

In a private conversation, however, Fernando Torres-Gil, the forum’s co-chair and professor of social welfare and public policy at UCLA, spoke of those themes.

Torres-Gil contracted polio when he was 6 months old and spent most of his childhood and adolescence at what was then called the Shriners Hospital for Crippled Children in San Francisco. Back then, kids with polio were shunned. “It’s a real tough thing to be excluded,” he remembered.

His advice to older adults whose self-image is threatened by the onset of impairment: “Persevere with optimism. Hang in there. Don’t give up. And never feel sorry for yourself.”

Now age 69, Torres-Gil struggles with post-polio syndrome and has to walk with crutches and leg braces, which he had abandoned in young adulthood and midlife. “I’m getting ready for my motorized scooter,” he said with a smile, then quickly turned serious.

“The thing is to accept whatever is happening to you, not deny it,” he said, speaking about adjusting attitudes about aging. “You can’t keep things as they are: You have to go through a necessary reassessment of what’s possible. The thing is to do it with graciousness, not bitterness, and to learn how to ask for help, acknowledging the reality of interdependence.”

Complete Article HERE!

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