Why Black Aging Matters Too

COVID-19’s exceptional toll on older African Americans is largely unnoticed

In this important and moving article, Kaiser Health News journalist Judith Graham recounts the myriad reasons why older Blacks are especially vulnerable to the coronavirus and describes their situation. This story also ran on CNN. Posted on the KHN website on September 3, 2020.

Old. Chronically ill. Black.

People who fit this description are more likely to die from COVID-19 than any other group in the country.

They are perishing quietly, out of sight, in homes and apartment buildings, senior housing complexes, nursing homes and hospitals, disproportionately poor, frail and ill, after enduring a lifetime of racism and its attendant adverse health effects. 

Yet older Black Americans have received little attention as protesters proclaim that Black Lives Matter and experts churn out studies about the coronavirus.

“People are talking about the race disparity in COVID deaths, they’re talking about the age disparity, but they’re not talking about how race and age disparities interact: they’re not talking about older Black adults,” said Robert Joseph Taylor, director of the Program for Research on Black Americans at the University of Michigan’s Institute for Social Research.

A KHN analysis of data from the Centers for Disease Control and Prevention underscores the extent of their vulnerability. It found that African Americans ages 65 to 74 died of COVID-19 five times as often as whites. In the 75-to-84 group, the death rate for Blacks was three and a half times greater. Among those 85 and older, Blacks died twice as often. In all three age groups, death rates for Hispanics were higher than for whites but lower than for Blacks.

(The gap between Blacks and whites narrows over time because advanced age, itself, becomes an increasingly important, shared risk. Altogether, 80 percent of COVID-19 deaths are among people 65 and older.)

The data comes from the week that ended Feb. 1, through Aug. 8. Although breakdowns by race and age were not consistently reported, it is the best information available.

Mistrustful of Outsiders

Social and economic disadvantage, reinforced by racism, plays a significant part in unequal outcomes. Throughout their lives, Blacks have poorer access to health care and receive services of lower quality than does the general population. Starting in middle age, the toll becomes evident: more chronic medical conditions, which worsen over time, and earlier deaths.

Several conditions—diabetes, chronic kidney disease, obesity, heart failure and pulmonary hypertension, among others—put older Blacks at heightened risk of becoming seriously ill and dying from COVID-19.

Yet many vulnerable Black seniors are deeply distrustful of government and health care institutions, complicating efforts to mitigate the pandemic’s impact.

The infamous Tuskegee syphilis study—in which African American participants in Alabama were not treated for their disease—remains a shocking, indelible example of racist medical experimentation. Just as important, the lifelong experience of racism in health care settings—symptoms discounted, needed treatments not given—leaves psychic scars.

In Seattle, Catholic Community Services sponsors the African American Elders Program, which serves nearly 400 frail, homebound seniors each year.

“A lot of Black elders in this area migrated from the South a long time ago and were victims of a lot of racist practices growing up,” said Margaret Boddie, 77, who directs the program. “With the pandemic, they’re fearful of outsiders coming in and trying to tell them how to think and how to be. They think they’re being targeted. There’s a lot of paranoia.”

“They won’t open the door to people they don’t know, even to talk,” complicating efforts to send in social workers or nurses to provide assistance, Boddie said.

In Los Angeles, Karen Lincoln directs Advocates for African American Elders and is an associate professor of social work at the University of Southern California.

Older Blacks are keeping to themselves. They’re deeply distrustful of government and of health care providers. 

“Health literacy is a big issue in the older African American population because of how people were educated when they were young,” she said. “My maternal grandmother, she had a third-grade education. My grandfather, he made it to the fifth grade. For many people, understanding the information that’s put out, especially when it changes so often and people don’t really understand why, is a challenge.”

What this population needs, Lincoln suggested, is “help from people who they can relate to”—ideally, a cadre of African American community health workers.

With suspicion running high, older Blacks are keeping to themselves and avoiding health care providers.

“Testing? I know only of maybe two people who’ve been tested,” said Mardell Reed, 80, who lives in Pasadena, California, and volunteers with Lincoln’s program. “Taking a vaccine [for the coronavirus]? That is just not going to happen with most of the people I know. They don’t trust it and I don’t trust it.”

Reed has high blood pressure, anemia, arthritis and thyroid and kidney disease, all fairly well controlled. She rarely goes outside because of COVID-19. “I’m just afraid of being around people,” she admitted.

Other factors contribute to the heightened risk for older Blacks during the pandemic. They have fewer financial resources to draw upon and fewer community assets (such as grocery stores, pharmacies, transportation, community organizations that provide aging services) to rely on in times of adversity. And housing circumstances can contribute to the risk of infection.

In Chicago, Gilbert James, 78, lives in a 27-floor senior housing building, with 10 apartments on each floor. But only two of the building’s three elevators are operational at any time. Despite a “two-person-per-elevator policy,” people crowd onto the elevators, making it difficult to maintain social distance.

“The building doesn’t keep us updated on how they’re keeping things clean or whether people have gotten sick or died” of COVID-19, James said. Nationally, there are no efforts to track COVID-19 in low-income senior housing and little guidance about necessary infection control.

Large numbers of older Blacks also live in intergenerational households, where other adults, many of them essential workers, come and go for work, risking exposure to the coronavirus. As children return to school, they too are potential vectors of infection.

‘Striving Yet Never Arriving’

In recent years, the American Psychological Association has called attention to the impact of racism-related stress in older African Americans—yet another source of vulnerability.

This toxic stress, revived each time racism becomes manifest, has deleterious consequences to physical and mental health. Even racist acts committed against others can be a significant stressor.

“This older generation went through the civil rights movement. Desegregation. Their kids went through busing. They grew up with a knee on their neck, as it were,” said Keith Whitfield, provost at Wayne State University and an expert on aging in African Americans. “For them, it was an ongoing battle, striving yet never arriving. But there’s also a lot of resilience that we shouldn’t underestimate.”

This year, for some elders, violence against Blacks and COVID-19’s heavy toll on African American communities have been painful triggers. “The level of stress has definitely increased,” Lincoln said.

During ordinary times, families and churches are essential supports, providing practical assistance and emotional nurturing. But during the pandemic, many older Blacks have been isolated.

In her capacity as a volunteer, Reed has been phoning Los Angeles seniors. “For some of them, I’m the first person they’ve talked to in two to three days. They talk about how they don’t have anyone. I never knew there were so many African American elders who never married and don’t have children,” she said.

Meanwhile, social networks that keep elders feeling connected to other people are weakening.

“What is especially difficult for elders is the disruption of extended support networks, such as neighbors or the people they see at church,” said Taylor, of the University of Michigan. “Those are the ‘Hey, how are you doing? How are your kids? Anything you need?’ interactions. That type of caring is very comforting and it’s now missing.”

In Brooklyn, NY, Barbara Apparicio, 77, has been having Bible discussions with a group of church friends on the phone each weekend. Apparicio is a breast cancer survivor who had a stroke in 2012 and walks with a cane. Her son and his family live in an upstairs apartment, but she does not see him much.

“The hardest part for me [during this pandemic] has been not being able to go out to do the things I like to do and see people I normally see,” she said.

In Atlanta, Celestine Bray Bottoms, 83, who lives on her own in an affordable senior housing community, is relying on her faith to pull her through what has been a very difficult time. Bottoms was hospitalized with chest pains this month—a problem that persists. She receives dialysis three times a week and has survived leukemia.

“I don’t like the way the world is going. Right now, it’s awful,” she said. “But every morning when I wake up, the first thing I do is thank the Lord for another day. I have a strong faith and I feel blessed because I’m still alive. And I’m doing everything I can not to get this virus because I want to be here a while longer.”

KHN data editor Elizabeth Lucas contributed to this story.

 

COVID-19 Sets Off a Pandemic of Despair for Older People

The longer their isolation goes on, the harder it is for many

As communities cautiously open up after the lockdown, older adults are being urged to not leave home yet because they’re more vulnerable than those who are younger. Journalist Judith Graham explores some of the consequences in this article that was posted on the KHN website on May 28, 2020. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. Graham’s story also ran on CNN 

As states relax coronavirus restrictions, older adults are advised, in most cases, to keep sheltering in place. But for some, the burden of isolation and uncertainty is becoming hard to bear.

This “stay at home awhile longer” advice recognizes that older adults are more likely to become critically ill and die if infected with the virus. At highest risk are seniors with underlying medical conditions such as heart, lung or autoimmune diseases.

Yet after two months at home, many want to go out into the world again. It is discouraging for them to see people of other ages resume activities. They feel excluded. Still, they want to be safe.

“It’s been really lonely,” said Kathleen Koenen, 77, who moved to Atlanta in July after selling her house in South Carolina. She’s living in a 16th-floor apartment while waiting to move into a senior housing community, which has had cases of COVID-19.

“I had thought that would be a new community for me, but everyone there is isolated,” Koenen said. “Wherever we go, we’re isolated in this situation. And the longer it goes on, the harder it becomes.”

(Georgia residents age 65 and older [were] required to shelter in place through June 12, along with other vulnerable populations.)

Her daughter, Karestan Koenen, is a professor of psychiatric epidemiology at Harvard University’s T.H. Chan School of Public Health. During a Facebook Live event this month, she said her mother had felt in March and April that “everyone was in [this crisis] together.” But now, that sense of communality has disappeared.

Making it worse, some seniors fear that their lives may be seen as expendable in the rush to reopen the country.

“[Older adults] are wondering if their lives are going to end shortly for reasons out of their control,” said Linda Fried, MD, dean of the Mailman School of Public Health at Columbia University, in a university publication. “They’re wondering if they’ll be able to get the care they need. And most profoundly, they’re wondering if they are going to be cast out of society. If their lives have value.”

If anything, I’ve seen a very strong will to live and acceptance of whatever one’s fate might be.

— Marc Agronin, MD 

On the positive side, resilience is common in this age group. Virtually all older adults have known adversity and loss; many have a “this too shall pass” attitude. And research confirms that they tend to be adept at regulating their reactions to stressful life events—a useful skill in this pandemic.

“If anything, I’ve seen a very strong will to live and acceptance of whatever one’s fate might be,” said Marc Agronin, MD, a geriatric psychiatrist and vice president of behavioral health at Miami Jewish Health, a 20-acre campus with independent living, assisted living, nursing home care and other services.

Several times a week, psychologists, nurses and social workers are calling residents on the campus, doing brief, mental health checks and referring anyone who needs help for follow-up attention. There’s “a lot of loneliness,” Agronin said, but many seniors are “already habituated to being alone or are doing OK with contact [only] from staff.”

Still, “if this goes on much longer,” he said, “I think we’ll start to see less engagement, more withdrawal, more isolation—a greater toll of disconnection.”

Erin Cassidy-Eagle, PhD, a clinical associate professor of psychiatry at Stanford University, shares that concern.

From mid-March to mid-April, all her conversations with older patients revolved around several questions: “How do we keep from getting COVID-19? How am I going to get my needs met? What’s going to happen to me?”

But more recently, Cassidy-Eagle said, “older adults have realized the course of being isolated is going to be much longer for them than for everyone else. And sadness, loneliness and some hopelessness have set in.”

She tells of a woman in her 70s who moved into independent living in a continuing care community because she wanted to build a strong social network. Since March, activities and group dining have been canceled. The community’s director recently announced that restrictions would remain until 2021.

“This woman had a tendency to be depressed, but she was doing OK,” Cassidy-Eagle said. “Now she’s incredibly depressed and she feels trapped.”

A 93-year-old plunged into despair after her assisted living facility went on lockdown in mid-March. Medications have not helped.

Especially vulnerable during this pandemic are older adults who have suffered previous trauma. Gary Kennedy, MD, director of the division of geriatric psychiatry at Montefiore Medical Center in New York City, has seen this happen to several patients, including a Holocaust survivor in her 90s.

This woman lives with her son, who got COVID-19. Then she did as well. “It’s like going back to the terror of the [concentration] camp,” Kennedy said, “an agonizing emotional flashback.”

Jennifer Olszewski, EdD, an expert in gerontology at Drexel University, works in three nursing homes in the Philadelphia area. As is true across most of the country, no visitors are allowed, and residents are mostly confined to their rooms.

“I’m seeing a lot of patients with pronounced situational depression,” she said, “decreased appetite, decreased energy, a lack of motivation and overall feelings of sadness.”

“If this goes on for months longer, I think we’ll see more people with functional decline, mental health decline and failure to thrive,” Olszewski said.

Some are simply giving up. Anne Sansevero, a geriatric care manager in New York City, has a 93-year-old client who plunged into despair after her assisted living facility went on lockdown in mid-March. Antidepressant and anti-anxiety medications have not helped.

“She’s telling her family and her health aides ‘life’s not worth living. Please help me end it,’” Sansevero said. “And she’s stopped eating and getting out of bed.”

The woman’s attentive adult children are doing all they can to comfort their mother at a distance and are feeling acute anguish.

What can be done to ease this sort of psychic pain? Kennedy of Montefiore has several suggestions.

Older adults may not own up to feeling depressed, but some will describe physical symptoms, such as difficulty sleeping or concentrating.

“Don’t try to counter the person’s perception and offer false reassurance. Instead, say, yes, this is bad, no doubt about it. It’s understandable to be angry, to be sad. Then provide a sense of companionship. Tell the person, ‘I can’t change this situation but I can be with you. I’ll call tomorrow or in a few days and check in with you again.’”

“Try to explore what made life worth living before the person started feeling this way,” he said. “Remind them of ways they’ve coped with adversity in the past.”

If someone is religiously inclined, encourage them to reach out to a pastor or a rabbi. “Tell them, I’d like to pray together or read this Bible passage and discuss it,” Kennedy said. “Comforting person-to-person interaction is a very effective form of support.”

Do not count on older adults to own up to feeling depressed. “Some people will acknowledge that, yes, they’ve been feeling sad, but others may describe physical symptoms—fatigue, difficulty sleeping, difficulty concentrating,” said Julie Lutz, PhD, a postdoctoral fellow at the University of Rochester.

If someone has expressed frequent concerns about being a burden to other people or has become notably withdrawn, that’s a worrisome sign, Lutz said.

In nursing homes, ask for a referral to a psychologist or social worker, especially for a loved one who’s recovering from a COVID hospitalization.

“Almost everybody that I’m seeing has some kind of adjustment disorder because their whole worlds have been turned upside down,” said Eleanor Feldman Barbera, PhD, an elder care psychologist in New York City. “Talking to a psychologist when they first come in can help put people on a good trajectory.”

The National Alliance on Mental Illness has compiled a COVID-19 information and resource guide, available at https://www.nami.org/covid-19-guide. The American Psychological Association has created a webpage devoted to this topic and recently wrote about finding local mental health resources. The Substance Abuse and Mental Health Services Administration has a 24-hour hotline, 1-800-662-4357. And the national suicide prevention hotline for those in acute distress is 1-800-273-8255.

 

Why the New Public Charge Rule Could Hit Older Immigrants Hard

Critics worry about the Trump administration’s changes

Digging into the possibilities opened up by this controversial new federal regulation, journalist Jaya Padmanbhan explores what it will mean to some immigrants and their families. This article originally appeared on the PBS Next Avenue website on Feb. 24, 2020.  Silver Century posts it with the permission of Next Avenue and the author. 

Devyani Dave immigrated from India to California in 1995 in her early 60s to live near her son and his family. Her green card was sponsored by her son (who prefers not to reveal his name), a citizen who came to the United States in 1973. When Dave arrived to start her new life, she had no health insurance and relied on her son to support her. Now, sitting on a bench at Priya Living, a senior-community facility in Santa Clara, CA, Dave said she feels fortunate to be in close proximity to her only child, especially as she ages.

But some immigration experts say the Trump administration’s new public charge rule, [which was put] into effect by the US Citizenship and Immigration Services on February 24, 2020, nationwide, will no longer welcome people in similar circumstances [to] Dave’s. That’s because, the analysts say, it will deem them likely to become liabilities for America.

How the Public Charge Test Has Changed 

Since 1999, federal immigration law has had a public charge test in place to deny people admission to the United States if the government identifies them as ones who may be “primarily dependent” on the government for support, either through cash-assistance programs or long term institutional care.

But the Trump administration is altering the definition of “public charge.” Under the new rule, any person who uses designated benefits for 12 months in any 36-month period might be considered a public charge. And the list of benefits has expanded to include Medicaid, the Supplemental Nutrition Assistance Program (SNAP, formerly known as Food Stamps) and Section 8 housing assistance.

It’s nearly impossible for older immigrants to pass the “totality of circumstances” test.

A public-charge determination will be made, at the time of applying for a green card or admission at the US border, by an immigration officer after considering a “totality of circumstances,” a discretionary weighting system [that looks] at factors including age, health, family status, assets, education and skills.

The totality of circumstances test will penalize people 62 years or older, said Natalie Kean, senior staff attorney at Justice in Aging, a nonpartisan legal advocacy group addressing senior poverty, making it “nearly impossible for older adults to pass the ‘public charge’ test under the new criteria.”

Who Is Likely to Be Most Affected?

Kean and other immigrant analysts say the revised public charge rule will tilt negatively for immigrants with chronic health conditions or disabilities; those who are not fluent in English; and those earning less than 125 percent of the federal poverty limit—that’s $21,138 for a two-person household.

With these stringent benchmarks, the new rule could have an outsize impact on low-income, older immigrants of color, preventing some from becoming legal permanent residents in the country they live in or aspire to live in.

This will have “a ripple effect on their families who are here in the United States, as well as our communities in general,” said Kean.

When the Supreme Court ruled on January 27, 2020, to give the Trump administration the go-ahead for its public charge rule, a statement from the White House press secretary called the decision “a massive win for American taxpayers, American workers and the American Constitution.”

In a fact sheet promoting the new public charge rule, the White House cited a 2017 poll from America First Policies (a pro-Trump organization), saying that 73 percent of Americans favor requiring immigrants coming to the country to be self-sufficient. 

Critics of the new public charge rule, however, say older, poorer immigrants will be harmed by it. In an amicus brief filed by Justice in Aging and others to contest the new rule, one of the arguments points to the situation of five million older immigrants who “are likely to have supported their families, have contributed to our nation’s economy by, for example, paying taxes and contributing to Social Security, and have been integrated into the fabric of our country. Yet, under the Final Rule, they will be viewed as having failed to contribute to society.”

How Immigrants Are Reacting

“That’s not fair!” exclaimed Losa Petela, a 60-year-old, legal immigrant from the South Pacific archipelago of Tonga, who lives in Fremont, CA, and has worked as a home caregiver in the Bay Area for nearly 10 years. Citing her own example, Petela said that immigrants who’ve served their US community well, even if they are older, should be allowed to get their green cards.

Praveen Thakur, 79, a US citizen who came here over 50 years ago from India and lives in Santa Clara, CA, takes a slightly different view. “If the children take full responsibility [for their parents], then older parents should be allowed to come and get a green card so that they can stay with their families,” he said.

Dave makes another distinction: “Those whose children are contributing to the [United States] for so many years and who don’t have anyone left in India should be allowed to join their families,” she said.

Fear and Confusion

Fears about the implications of the new public charge rule are spreading.

“We know that health care providers and social service agencies across the country are already starting to get calls from concerned individuals, asking whether or not it is safe to remain enrolled in health, housing and nutrition programs,” said Madison Allen, senior policy attorney from the Center for Law and Social Policy, a nonpartisan nonprofit working on policy solutions for low-income people.

This chilling effect, caused by confusion as to who or what will be subject to the public charge test, has resulted in some legal immigrants disenrolling from public programs even before the February 24, 2020, official start date.

The New York City Department of Social Services has said that in 2018, roughly 11 percent of the city’s noncitizen immigrants who are eligible for and lawfully receiving SNAP benefits have either left the SNAP caseload or have decided not to enroll, at a higher rate than US citizens in the program. The agency cited a correlation between this decline in enrollment and the public charge proposals, due to a “fear of potential immigration consequences.”

Opposition to the Rule Change

Congresswoman Judy Chu, a Democrat representing communities near Los Angeles, said at a Jan. 31, 2020, press briefing, “By keeping families apart, Trump is making it harder on immigrants to succeed.” Last year, Chu introduced the No Public Funds for Public Charge Act, which would prevent federal funds from being used to implement the new public charge rule. The bill has 118 Democrat cosponsors from 34 states and no Republicans.

“We are in a wait-and-see period right now,” said Denny Chan, a senior staff attorney at Justice in Aging. Arguing that the new public charge rule unlawfully targets older immigrants and their families, five briefs have been filed in circuit courts by organizations advocating for the elderly.

“It’s going to be a lengthy process,” Chan said….

Older immigrants who are worried about the public charge rule, Chan said, should “speak to an immigration attorney to get individualized legal assistance before they make any decision to access, or apply for, benefits.”

Silver Century Foundation: The change in the public charge rule went into effect in late February, 2020, just as the coronavirus epidemic was exploding across the country. Since then, the US Citizenship and Immigration Services has agreed not to use the new rule to deny visas or green cards to immigrants who are tested or treated for COVID-19.  Advocacy groups say, however, that immigrants are still avoiding medical care because of fear and confusion.

 

Older and Wiser—but Dizzier

At some point, most people over 65 experience dizziness

Carol Kuhlman vividly remembers a weekend trip with friends about two years ago—because that’s when she started feeling dizzy. The lightheaded, unsteady sensation came on gradually and quickly got worse. 

“It was very uncomfortable,” said Kuhlman, 66. “I had to hold onto things just to keep from falling. By Monday I was so dizzy, I couldn’t go to work.”

Her physician diagnosed her with vertigo, noticing her rapid eye movements, recommended some exercises and prescribed meclizine, which didn’t prove a practical solution. 

“I took one tablet in the middle of the day and immediately slept for five hours,” she said. 

The doctor wrote a note to excuse Kuhlman from work—for just two days. She was still dizzy when she went back. Her colleagues immediately noticed something wasn’t right. “I was very unsteady on my feet and weaving all over the place,” she said. 

Many times, dizziness is caused by something benign, but it’s still emotionally and psychologically devastating. 

Kuhlman’s struggle wasn’t an atypical one for older adults. Dizziness can affect anyone, but older people are more prone—about 70 percent of adults over 65 have suffered from it in some form. And compared to younger people, dizziness in older adults tends to be more persistent, have more causes and be more incapacitating. 

“We see patients with dizziness very frequently, and we take it very seriously,” said Anupama Gangavati, MD, an assistant professor in internal medicine in the division of geriatric medicine at UT Southwestern Medical Center in Dallas. 

A patient’s experience of dizziness may come in a variety of forms: a feeling of lightheadedness or imbalance; a sensation of blacking out; or vertigo, the perception that the patient—or the surrounding environment—is spinning, tilting or moving. 

Several studies show that older people with a history of dizziness are at higher risk of falling, which is a leading cause of hospitalization and accidental death among those over age 65.

While many causes of dizziness turn out to be benign, the effects can be emotionally and psychologically devastating. Dizziness is disorienting and unnerving. Sudden bouts are frightening; chronic cases can be debilitating. 

“It’s a quality of life issue,” said Gangavati. “Dizziness can lead to a lot of psychological distress if you’re not able to control it. Patients should not let it go just because a physician has not addressed it successfully on the first try.”  

What Causes Dizziness?

Accurate diagnosis can be a challenge. Dizziness can stem from a range of issues, including problems affecting the inner ear, brain, eyes, nervous system, vascular system or heart, all of which are subject to aging-related changes, according to Kathleen Stross, PT, a neurological and vestibular therapist.

Many older adults take multiple medications; dizziness may be a side effect of one or the result of an interaction between drugs. Neurological conditions like Parkinson’s can cause dizziness. Even health issues that might seem unrelated—such as neuropathy (numbness or loss of feeling) in the feet—can cause a patient to feel unbalanced and dizzy. Stress, depression or a lack of exercise may also contribute, as can dehydration or hot weather conditions. 

Among older people, one of the most common causes of dizziness is dysfunction of the peripheral vestibular system—the inner ear and its pathways to the brain. This controls a person’s balance and spatial perception. Neurologists call the vestibular system “the sixth sense” and, just like other sensory functions, it changes as people age. 

“As we age, just as our vision changes and our hearing may be affected, the vestibular system ages as well and may not function as well as it did when we were younger,” said Stross.

Patients can help their medical providers to diagnose the cause more accurately by giving a clear description of their dizziness. Stross gives new patients a questionnaire to help pinpoint their experience—what it feels like, how often it occurs and what, if anything, seems to trigger it. 

“The way people describe it can really vary, so I ask patients to tell me how they feel without using the word ‘dizzy,’” said Stross. “For some, it’s a feeling of being lightheaded or off-balance. Some describe it as feeling ‘heavy headed’ or a sense of floating or pressure. Others say they feel as if they’re spinning or moving.”  

Steve Lavine, 65, of Plano, TX, began experiencing dizzy spells when standing up from a chair. They got progressively worse, to the point where he felt he might black out. Lavine checked his blood pressure and found it was low, almost dangerously so. After consulting with his physician, Lavine stopped the blood pressure medication he had been taking for more than six months with no problems. Lavine had since lost 15 pounds through diet and exercise. The medication was now overcorrecting and making his blood pressure too low, causing the dizzy spells. When he stopped the medicine, the problem disappeared in a few days.

A thorough medication review is absolutely important.

Anupama Gangavati, MD

When a patient complains of dizziness, one of the first things Gangavati checks is the person’s list of medications. Blood pressure medications are common culprits, as are antidepressants, beta blockers, prostate medications and diuretics.   

“Medications are one of the most common contributors of lightheadedness or dizziness,” she said. “A thorough medication review is absolutely important.” 

Gangavati also performs an exam, reviews the patient’s medical history and asks about triggers—when the dizziness occurs and what seems to be causing it. 

Beyond drug side effects, Gangavati said she sees three common causes of dizziness among her older adult patients: benign paroxysmal position vertigo (BPPV), orthostatic hypotension and postprandial hypotension. 

BPPV occurs when tiny calcium particles (canaliths) clump up in canals of the inner ear, interfering with normal perception about head and body movements relative to gravity. Doctors diagnose the condition by observing patients’ eyes while they’re moving their heads. Patients with BPPV exhibit rapid, uncontrollable eye movements. The symptoms may be severe, making the patient feel as if the room is spinning, and may lead to nausea and vomiting. 

“BPPV tends to occur in episodic bouts of a few hours,” Gangavati said. “It’s triggered by head movement, and if you stop moving your head and keep it in one position, it subsides or goes away.” 

Orthostatic hypotension is a bout of dizziness or lightheadedness due to a lack of blood supply to the brain, typically triggered when a person stands from a sitting or lying position. Postprandial hypotension occurs when patients feel dizzy or faint after eating a meal, because their blood supply is geared to the stomach to digest the meal.

Trial and Error

Imani Calicutt, 65, of Dallas, sometimes experiences bouts of dizziness, and her doctor’s not sure why.

“Lately, it’s been constant,” she said. “It’s really limiting me because I can’t go very far without having to sit down.”

She’s working with her doctor (now via telemedicine due to the COVID-19 crisis) to determine the cause. Because Calicutt takes an array of medications for arthritis, diabetes, chronic pain and kidney disease, she’s expecting it may take some trial-and-error to find the cause.  

That’s not uncommon, Stross said. 

“In our experience, patients usually need to see three physicians before they get an answer,” said Stross. Because dizziness could relate to any number of areas of the body, finding the right specialist isn’t easy. 

After a visit to a primary care physician, the patient’s next step might be an appointment with an ENT (ear-nose-throat) specialist or a neurologist, or possibly a cardiologist (if vascular issues are suspected) or hematologist (if anemia is suspected). 

Brief moments of lightheadedness are probably not serious but do mention them to your doctor.

To treat dizziness, a physician may prescribe medications or dietary and behavioral modifications. That can include basic steps like ensuring the patient is drinking enough fluids and getting enough rest and exercise. 

For problems relating to the inner ear, including BPPV, vestibular rehabilitation therapy can be effective. Vestibular therapy ranges from simple exercises (a well-known one is the Epley maneuver, which involves positioning the head to help dislodge the tiny particles that cause BPPV) to physical therapy that helps the patient learn to compensate for imbalance and maintain physical activity. Vestibular therapy, when indicated, may provide immediate relief, or it may take some time to see results.

Gangavati added that many older people will experience brief moments of lightheadedness that likely don’t signal any serious problem. But she recommends at least mentioning it on the next visit to the doctor. “I think any dizziness should be discussed with your physician.” 

If acute dizziness occurs and is accompanied by other symptoms—like chest pain, difficulty walking or slurred speech—it could be a medical emergency, like a heart attack or stroke. In that case, Gangavati advises, head to the emergency room.  

Chronic Dizziness

Twelve years ago, as he walked out of the hospital after finishing his rounds, Tom Davis began to feel dizzy. 

“I’ve been dizzy ever since,” said Davis, 58, a physician in St. Louis, MO. Over the years, specialists have come up with different diagnoses: vestibular neuronitis, vestibulitis and Meniere’s disease, among others. None of the prescribed treatments fixed the problem permanently. Vestibular therapy made it worse. He considered surgery, which would destroy the nerve in the inner ear, but that would leave him deaf in one ear and offered no guarantees. At this point, instead of searching for a diagnosis, he’s focused on managing the symptoms as best he can. 

“It really doesn’t matter what’s causing it, because there’s no way to fix it,” he said. “You just have to work your way around that reality.” Regular exercise keeps him strong and helps reduce the risk of falls. On bad days, he takes a low-dose sedative and rests.

Unfortunately, like Davis, some people may have to contend with dizziness as a chronic or recurring issue. He says getting social support is important, especially for older people who might be tempted to isolate or become sedentary, for fear of falls. 

“If you have chronic dizziness, you’re not alone,” he said. “There are many groups on Facebook where you can get support from others.” 

Patients with chronic dizziness can also find helpful information and links to providers on the website for the Vestibular Disorders Association. Several other organizations offer support groups and other resources.   

Carol Kuhlman has been more fortunate. She did find some relief. She returned to work, still dizzy, a few days after her symptoms first appeared. She’s an administrative assistant at a medical school and, as luck would have it, an expert on vestibular disorders was visiting her department that day. 

Coworkers arranged for her to see the specialist, who diagnosed acute peripheral vestibulopathy (inflammation of the inner ear). He prescribed vestibular therapy, which helped reduce the dizziness and restored her sense of balance. Kuhlman still has flare-ups from time to time, but she’s found a way to manage them. Exercise and stress management seem to help.

“When it recurs, I go back to the balancing exercises, which help,” she said. “And when I have a flare-up, I just have to push through.” 

 

Is Aging a Disease?

Some say it is, but others disagree. Funding hangs in the balance

It’s not just semantics—a matter of whether you refer to aging as a disease or a stage of life. The choice has consequences. Daily Beast columnist Joelle Renstrom digs deep here and considers all sides of the argument in this thoughtful piece, which was written with the support of a journalism fellowship from the Gerontological Society of America, Journalists Network on Generations, and the Commonwealth Fund. Her article was posted originally on Slate on March 2, 2020.

The first depiction of humanity’s obsession with curing death is The Epic of Gilgamesh—which, dating back to at least 1800 BC, is also one of the first recorded works of literature, period. 

Centuries later, the ancient Roman playwright Terentius declared, “Old age itself is a sickness,” and Cicero argued [that], “we must struggle against [old age], as against a disease.” In 450 BC, Herodotus wrote about the fountain of youth, a restorative spring that reverses aging, and inspired explorers such as Ponce de León. 

But what once was a mythical holy grail is now seemingly within tantalizing reach. As humans’ understanding and knowledge of science and technology have increased, so too have our life spans. Until the 1800s, life expectancy across Europe averaged between 30 and 40 years, and now the average life expectancy in the United States is just under 79 years; in Japan and Hong Kong, it’s more than 84 years.

Maybe the ancients weren’t wrong, and aging can be not only delayed but cured like a disease. Over the years, the movement to classify aging as a disease has gained momentum not only from longevity enthusiasts but also from scientists. In 1954, Robert M. Perlman published a paper in the Journal of the American Geriatrics Society called “The Aging Syndrome” in which he called aging a “disease complex.” 

Since then, others have jumped on board, including gerontologists frustrated by a lack of funding to study the aging process itself. A 2015 publication by a team of international researchers declares, “It is time to classify biological aging as a disease.” In 2018, the World Health Organization added an extension code in the latest version of the International Classification of Diseases for “ageing-related diseases,” which it defines as those “caused by pathological processes which persistently lead to the loss of organism’s adaptation and progress in older ages.” In other words, diseases that occur and worsen as we age, like cancer and arthritis. That decision may pave the way for defining aging itself as a disease.

However, labeling aging itself as a disease is both misleading and detrimental. Pathologizing a universal process makes it seem toxic. In our youth-obsessed society, ageism already runs rampant in Hollywood, the job market and even presidential races. And calling aging a disease doesn’t address critical questions about why we age in the first place. Instead of calling aging a disease, scientists should aim to identify and treat the underlying processes that cause aging and age-related cellular deterioration.

Old age isn’t abnormal, so why would aging be pathological?

Medical understanding of that cellular deterioration began in 1962, when Leonard Hayflick, PhD, professor of anatomy at the University of California San Francisco School of Medicine, made fundamental breakthroughs to understanding aging: he discovered a limit to how many times typical human cells divide before they become senescent, or exhausted. Before then, scientists had assumed human cells were immortal. Hayflick also figured out that telomeres, which cap the ends of chromosomes and prevent them from fraying, much [as] plastic tips preserve the ends of shoelaces, shorten each time a cell divides. When the telomeres get short enough, a cell stops dividing.

Questions about the underlying processes of aging, and [their] relationship to specific diseases, endure. In 2013, a team of international researchers identified nine “hallmarks of aging”: disrupted communication between cells, genome mutations (associated with cancer), telomere shortening, changes in DNA’s chemical structure (apart from the genetic code), degradation of cellular proteins, diminished cellular ability to identify and adjust to nutrient levels, impaired mitochondrial functioning, cellular senescence (when cells stop dividing and growing due to age), and nonrenewal of stem cells. 

While each hallmark has symptoms, “there are no biomarkers to describe aging overall,” according to Chuck Dinerstein, [MD], senior medical fellow at the American Council on Science and Health. These hallmarks occur in every human, and because many of them occur simultaneously, it’s difficult to tease out each individual process or to identify causal relationships. We know that the net effect is aging, but there’s a lot scientists don’t yet know about the processes that cause these hallmarks. Hayflick has argued that differentiating between aging and age-associated diseases is crucial, and that the lack of distinction between them “is the most serious impediment to our understanding of the aging process.”

Semantics and subjectivity add to the difficulty. Old age isn’t abnormal, so why would aging be pathological? If aging is a disease, then all 7.7 billion people on Earth have it, and everyone over the age of 65 has an advanced case. If you bristle at that notion, you have a sense of the designation’s damaging stigma. 

Suresh Rattan, [PhD], of Denmark’s Aarhus University’s Laboratory of Cellular Ageing, believes that a condition everyone experiences can’t by definition be a disease. Yes, aging is associated with numerous health issues: heart disease, Alzheimer’s and many types of cancer and diabetes. But while those diseases become more common as people age, not every aging person acquires them (and sometimes younger people do). 

Peter Boling, [MD], director of geriatrics at Virginia Commonwealth University Medical School, noted in a panel at the 2019 Gerontological Society of America [GSA] conference that such “conditions are not directly linked to aging as a biologic phenomenon per se.” In other words, while these conditions are associated with aging, they aren’t necessarily triggered by aging itself but rather by the biological processes of aging, or the cause of those nine hallmarks. 

Biological processes are the cause, while age-related diseases are the effect. That means that treatments that appear to slow aging overall might actually only be addressing one symptom, and doctors and patients might not realize that limited efficacy for a long time.

It’s an uphill battle to get Congress to fund research into a process that is not an actual disease.

Classifying aging as a disease also suggests that it could be preventable and/or curable. Perhaps at some point, if scientists can figure out what causes the underlying process of aging, this could be the case. However, nothing can prevent humans from getting older, and that misleading notion opens the door to snake-oil treatments.

A position statement prepared by Hayflick and more than 50 other scientists warns that claims made by companies producing anti-aging drugs, supplements, hormones and other treatments are “intentionally false, misleading, or exaggerated for commercial reasons.” Such marketing leads not only to fruitless consumer spending but also makes it difficult for the public to separate corporate propaganda from scientific research. Society’s obsession with youth, coupled with humans’ susceptibility to wishful thinking and magic-bullet promises, ensures demand for these products, which dubious and disingenuous suppliers will happily meet.

The claims that various treatments fight aging haven’t been vetted because the Food and Drug Administration [FDA] does not currently regulate any practices or products designed to address aging. Boling points out that even if someone created a drug to mitigate the cellular processes underlying aging, it “could not find a pathway to market.” 

This is the most compelling reason for the disease classification, and the reason some gerontologists support it. In addition to greater regulatory guidance, aging research would likely receive far better funding. Congress allocates money to researching age-related conditions such as Alzheimer’s, but getting Congress to fund research into a process that is not an actual disease is an uphill battle.

However, according to G. Alexander Fleming, [MD], former FDA supervisory medical officer, the FDA “has long approved products that prevent chronic disease.” The issue here seems largely semantic, but it underscores the importance of addressing not just the effects of aging but the underlying causes of those symptoms.

Given that aging is the biggest risk factor for chronic diseases, treatments that focus on the underlying aging process could, according to Fleming, “in one fell swoop, intervene in several or many chronic diseases of aging.” Furthermore, the processes underlying age-related diseases likely overlap, so if researchers can figure out what biological processes make people more susceptible to heart disease or Alzheimer’s, they could potentially treat multiple conditions at once.

If we think of aging only as an enemy to be conquered, we lose sight of ways to improve our health and quality of life in later years. 

The distinction between aging and its underlying causes also affects research funding. Jamie Justice, [PhD], an assistant professor of gerontology and geriatric medicine at Wake Forest, said during the GSA panel that she doesn’t think “Is aging a disease?” is the right question. The better question, she said, is “Why do we have to force aging to be a disease in order to get clinicians, regulatory officials and stakeholders to do something about it?” 

Part of the answer, according to Hayflick, is that what policymakers don’t know about aging dictates their decisions: “Policy makers … must understand that the resolution of age-associated diseases will not provide insights into understanding the fundamental biology of age changes. They often believe that it will, and base decisions on that misunderstanding.”

Because of that misconception, funding for research into age-related diseases such as cancer and Alzheimer’s far exceeds funding for research into biological aging processes. If old age is a risk factor for nearly all of the conditions likely to kill us, Hayflick asks, “why then are we not devoting significantly greater resources to understanding what … increase[s] vulnerability to all age-associated pathology?” Understanding the underlying processes would allow scientists to work on treatments that address the causes of aging, not just its effects.

Rattan articulates concerns with “enemy-oriented rhetoric, such as the ‘war against aging,’ ‘defeating aging,’ and ‘conquering aging.’” Even in medicine, language matters. Aging is not our foe, nor is it categorically negative. If we embrace the idea of vanquishing this “enemy,” we may not only encourage ageism but also lose sight of ways we can improve our health and quality of life as we get older.

Many gerontologists distinguish between “healthspan” and “lifespan,” the length of time someone enjoys [relatively] good health versus the length of someone’s life. Longevity while in poor health, pain or with limitations that sap quality of life makes little sense. Fleming urges “regulators and public policy makers to embrace healthspan as an organizing focus for facilitating the development of medicine that targets aging and chronic diseases.” This shift would promote research on disease-causing processes, which could help us prevent more age-related diseases, not just manage them.

As gerontologists Sean Leng, [MD, PhD], and Brian Kennedy, [PhD], put it, “Aging is the climate change of health care.” The Population Reference Bureau predicts that 100 million Americans will be 65 or older by 2060. How will we care for this population? It’s daunting to think about one’s own aging, let alone the 16 percent of the world’s population who will be senior citizens by midcentury. A big-picture approach focused on the processes of aging—processes we share with nearly all living organisms—will put us on a path not only to longer lives but to healthier ones.

Patient Advocates: Pathfinders in the Complex World of Medicine

They provide advice and support for patients and their families

When a life-threatening staph infection sent Dominick Buttiglieri, 64, to the hospital, his situation quickly worsened—and his wife, Deborah, soon felt overwhelmed. 

“His organs were shutting down, and the doctors weren’t giving us much hope,” she said. Dominick was in pain and barely conscious; Deborah was beside herself with worry. 

The Buttiglieris’ son lives in another city and couldn’t be there to help. Instead, he searched online and hired AnnMarie McIlwain, a patient advocate, who turned up at the hospital to assist. Immediately, the family felt more control over the situation. 

“AnnMarie spoke to the doctors, gave me better insight into what was going on and made suggestions without telling us what to do,” Deborah Buttiglieri said. “I’m not an in-your-face person. I didn’t know what questions to ask to get the information I wanted.” 

As Dominick started to recover, McIlwain helped the family arrange for his transfer to a good rehab facility. Now, he’s home and on the mend. 

We have the most confusing health care system in the world. If you’re feeling overwhelmed, it’s not you.

—Caitlin Donovan

More and more patients and their families are following the same path as the Buttiglieris: enlisting the help of a patient advocate to navigate the complexities of the medical system. 

“A patient advocate’s role is to make sure the medical team has the right information, to make certain the client is getting the proper attention, and translating for the family what is going on,” McIlwain said. “The hospital environment is stressful; patients are usually in pain, sedated and weak, and their loved ones are understandably emotional. It’s too much to advocate for themselves.”

Patient advocates support people undergoing medical treatment, with a focus on getting the best possible care while keeping costs as manageable as possible. Patient advocates may also use other names—health advocates, patient or health navigators, case or care managers or doulas. They work one-on-one with patients as independent consultants, paid by the patients or their families. Some advocates come with a medical or social work background; others learn on the job. Many join the field after assisting a family member. 

“Patients should only have to concentrate on getting better,” said Caitlin Donovan of the Patient Advocate Foundation, a nonprofit that provides advocacy and patient education. “We have the most confusing health care system in the world. If you’re feeling overwhelmed, it’s not you.” 

Multiple Roles

Patients who are considering enlisting the help of a patient advocate should first consider: What kind of help is needed? The role of a patient advocate can vary broadly, depending on the patient’s needs and the patient advocate’s area of expertise. Some patient advocates have medical training and assist with navigating medical care, sometimes even specializing in areas like oncology. Some focus on billing issues. Others may assist with more administrative tasks: scheduling medical appointments, helping people sign up for Social Security or Medicare, organizing medical information or hiring a caregiver. Some work in teams to provide a range of skills and expertise.

Patient advocates often fill the communication gaps that can occur with older adults who have multiple medical issues. Deirdra Kindred, an RN and patient advocate, was hired by a family to assist their 92-year-old mother, who was losing weight and refusing to leave her room in the upscale, assisted living facility where she lived. 

“She was suffering from diarrhea and nausea and did not want to leave the room because she was afraid she’d throw up or have an accident,” Kindred said. She learned that the woman was taking 17 medications, some of which had been prescribed for years. She had several specialists but no one assessing her overall medicine intake. Working with the woman’s doctors, Kindred helped her wean to nine medications, and the diarrhea and nausea disappeared. Soon the woman was leaving her apartment, eating regularly and enjoying life again.

A patient advocate understands the system, knows how to ask the right questions and can lessen the burden for patients and their families. 

Some patient advocates assist in navigating insurance and correcting billing errors. Experts estimate that as many as 80 percent of all medical bills contain errors. Yet the process for correcting those errors is often labyrinthine. If there’s a snag in insurance processing, a hospital typically will continue to bill the patient and even threaten to send the bill to a collection agency. Getting the right people on the phone who can resolve the problem—either at the hospital and/or the insurance company—can prove difficult and time-consuming. Most patients don’t have the knowledge or the energy to tackle the challenge. A patient advocate who works in this area, however, understands the system, knows how to ask the right questions and relieves some of the burden for stressed patients and their families.

“When our case managers help a patient, it takes an average of 22 phone calls to resolve a billing issue,” Donovan said. “Having someone who knows how to talk to billing offices and to insurers is incredibly helpful.” 

Patient advocates also help navigate the vastness of the medical system. Barbara Abruzzo, a registered nurse, helps clients obtain second opinions, sorts out their options and manages complex care. She also may assist families in researching which doctors, hospitals or research facilities are best, given the patient’s condition and situation. 

Abruzzo has organized conference calls that brought together family members, hospital administrators, surgeons, physicians and nurses at once to plan a patient’s care when it required the expertise of several different specialists. For that kind of complex care navigation, she believes, clients should seek a patient advocate with medical training. 

“Doctors see that I know what I’m doing and that I mean business,” she said. 

In the Hospital—and Out 

Some patient advocates offer hospital accompaniment—visiting or even staying at the client’s bedside when family members can’t be there or feel they can’t advocate effectively in a complex situation. 

“Too many medical professionals are overworked and overwhelmed,” said Lisa Berry, a patient advocate. “For years, doctors have told me off the record that hospitals are dangerous places, because they cannot do their jobs. It’s very easy for mistakes to be made.” 

No one should go into a hospital without someone there to advocate for them, whether it’s a professional advocate or a family member, said Michael Weisburg, MD, a gastroenterologist. Most primary care physicians no longer have hospital privileges to attend to their patients when they’re hospitalized. Instead, patients’ care is managed by hospitalists—physicians who coordinate their treatment until they go home. Hospitalists work only in hospitals, which employ them, and the care they provide is dictated by each institution’s guidelines.   

“The hospitalist is someone who has never seen you before, knows nothing about you and doesn’t have the time to learn about you,” Weisburg said. “And that doctor in charge may change every couple of days.”

A patient advocate can help as patients leave the hospital—a critical juncture when things can easily go wrong. 

Weisberg experienced this dilemma himself during his 91-year-old father’s hospitalization for a broken hip. While visiting, Weisburg saw that his father was agitated and trying to get out of bed. Weisberg suspected a problem with his catheter and alerted a nurse. However, the hospitalist on duty was occupied by another emergency and simply prescribed a sedative, which only made the patient more agitated. Still busy with the emergency, the hospitalist ordered the nurse to restrain Weisberg’s father. 

Because restraints are dangerous (they can cause patients to aspirate), Weisberg called another hospitalist who had cared for his father earlier and was off duty. That hospitalist ordered nurses to check on the catheter, which, as Weisberg suspected, was not functioning properly. Another catheter was inserted and quickly filled with two bags of urine. Weisberg’s father immediately felt much better and fell into a deep sleep. 

“If I hadn’t been there, he could’ve been put into restraints, aspirated and died,” Weisberg said.  

Another task of patient advocates is to assist clients as they transition out of the hospital for recovery at home, at rehab or at another facility—a critical juncture when things can easily go wrong. Often, hospitals will discharge patients who need ongoing medical attention, expecting family members to pick up the responsibility at home. Patients who don’t have family or friends willing or able to help may be left to fend for themselves. 

Patients do have legal rights in this kind of situation, Berry noted, but most don’t know that. She works hard to make sure her clients aren’t discharged prematurely, which often occurs with Medicaid coverage or similar programs that pay minimal reimbursements to hospitals. In one case, a hospital tried to discharge one of her pro bono clients too early; the social worker on duty told Berry there was no option to protest. Berry knew better and insisted on an emergency hearing with an administrative law judge. The patient stayed. 

Finding a Patient Advocate

The Alliance of Professional Health Advocates offers a complete list of services that patient advocates provide, as well as AdvoConnection, a searchable directory of patient advocates. While users may search by zip code, a patient advocate doesn’t necessarily need to be local. Many advocates can assist remotely, depending on the situation. The Patient Advocate Foundation, a nonprofit, offers a range of services, including trained volunteers who can assist patients with billing and getting access to care; much of their work is done remotely. 

Keep in mind that independent advocates differentiate themselves from nurse navigators or patient advocates hired by hospitals or insurers, who don’t ultimately answer to the patient.

Another good place to start is with nonprofit groups that support people with specific diseases or conditions. These organizations may offer referrals to patient advocates, including some who are volunteers. The American Cancer Society, for example, can connect patients with advocates in some areas of the country. 

When looking to hire a patient advocate to help navigate medical care, talk to at least three candidates by phone, Berry said. (Most will do a preliminary consultation at no cost; ask first.) To get a good feel for whether someone will have the expertise to address particular concerns, provide a clear description of the patient’s issues and needs. 

Family as Advocates

Family members can be effective patient advocates, especially if they’re quick studies and have the time to devote to the task. Bruce Carr found himself in that role in early 2019 when his sister, Joan, 72, was hospitalized with a severe infection that was complicated by underlying conditions. Carr traveled from his home in Ohio to be near her in Dallas. Quickly, the task became his full-time job. 

“I dropped everything,” said Carr, who is a turnaround and bankruptcy consultant. “Thankfully, I was between gigs and in the financial position to take the time off.”  

He spent his days talking to her doctors and helping Joan make tough decisions; he devoted his evenings to reading medical literature and insurance information. Even though his sister was receiving world-class care, Carr said, she needed someone to advocate for her. 

Carr’s advice: keep a journal and write everything down. 

“So much comes at you so fast, you can’t remember if you don’t write it down,” he said.

Eventually, he made decisions when she was unable to do so herself. Joan passed away in September 2019; without his presence, Carr believes, she would have died six months earlier. 

Family members can find resources online to assist in their advocacy efforts. The National Patient Advocate Foundation offers tips for communicating with health care providers. Another nonprofit, Zaggo, offers a variety of resources including a free, downloadable chart for tracking treatments and medications. 

Not everyone, of course, has a family member like Carr available and able to focus on a loved one’s care; professional patient advocates can fill that gap. Plus, disagreements can arise in the family over the best course of action for a family member’s medical care, especially if the patient is unable to make decisions herself (or himself). In those situations, a professional patient advocate can serve as a neutral third party, someone who can objectively weigh available treatment options and help families better resolve disagreements. 

Whether it’s a family member or a professional, Weisberg says, what’s most important is to have someone in your corner when you’re sick. 

“There’s got to be someone—a parent, a spouse, a child, someone you pay—who has your best interests at heart and can stand up for you,” he said. 

 

Parenting Your Aging Parents

What can you do if they refuse the help they obviously need?

You can see that your parents are having difficulties, perhaps even running risks they shouldn’t, but they’re quite sure they can manage. What can—and should—you do? Writing for Kaiser Health News (KHN), journalist Judith Graham consults some experts for advice on a problem many families confront. Her article was posted on the KHN website on Dec. 19, 2019.

David Solie’s 89-year-old mother, Carol, was unyielding. “No, I will not move,” she told her son every time he suggested that she leave her home and relocate to a senior-living residence.

And it didn’t stop there. Although Carol suffered from coronary artery disease, severe osteoporosis, spinal compression fractures and unsteady balance, she didn’t want assistance. When Solie brought in aides to help after a bad fall and subsequent surgery, his mother fired them in a matter of days.

“In her mind, she considered it a disgrace to have anybody in her home,” Solie said. “This was her domain for over 50 years, a place where she did everything by herself and in her own way.”

Conflicts of this sort often threaten relationships between aging parents and their adult children just when understanding and support are needed the most. Instead of working together to solve problems, families find themselves feuding and riven by feelings of resentment and distress.

Solie got so worked up, he considered going to court and asking for a conservatorship—a legal arrangement that would have given him control over his mother’s affairs. (The situation was complicated because Solie’s brother, who has Down syndrome, lived at the family home.) But Solie’s lawyer advised that this course of action would destroy his relationship with his mother.

Ask your parents how they’d prefer to solve problems and what their priorities are. 

Today, Solie, a health care consultant and writer with a well-regarded blog about aging, sounds the same theme when he consults with adult children caring for parents. Make preserving trust and keeping your relationship intact—not winning arguments—a priority, he suggests. What your parents most need is confidence that you’ll listen to them, take their concerns seriously and stay by their side no matter what happens, he says.

How adult children communicate with parents can go a long way toward easing tensions, Solie says. Instead of telling your parents what to do, ask how they’d prefer to solve problems. Elicit their priorities and recognize their values when making suggestions. Give them choices whenever possible. Be attuned to their unexpressed needs and fears.

When Dr. Lee Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine, asked 68 older adults in eight focus groups why they resisted help, the answers varied. They said they were afraid of losing their independence, becoming a burden on loved ones, being taken advantage of, and relinquishing control over their lives.

Asked what might make a difference, the older adults said they liked the idea of “interdependence”—acknowledging that people need one another from childhood to older age. And they found it helpful to think that “by accepting help, they were in turn helping the person providing the help,” according to Lindquist’s study, published last year in the Journal of the American Geriatrics Society.

Unfortunately, no amount of patience, compassion or forbearance will work in some conflict-ridden circumstances. But here’s some of what experts have learned:

Be patient. Give your parents time to adjust. At first, Jane Wolf Frances’ 87-year-old mother, Lillian Wolf, wouldn’t consider moving with Jane’s father from New York City to the Los Angeles area, where Frances, her only child, lived.

Although Lillian had Alzheimer’s disease, and Frances had planned to give her one-story house to her parents, “I deferred to my mother’s fear that she was going to be losing something essential,” she said.

During three years of caregiving, Frances had learned to not rush her parents. She knew they had slowed down and needed time to process change.

So Frances waited until her parent’s home health aide called with concerns about their ability to live independently. After discussing the situation with their physician, Frances approached her mother again. A move to assisted living would be a fresh start, allowing the family to spend more time together, she said. After several conversations, her mother finally agreed.

Frances, a psychologist, is the author of a new book, Parenting Our Parents: Transforming the Challenge into a Journey of Love, and founder of www.parentingourparents.org. Stay calm when disagreements arise with your elderly parents and tamp down your emotional reactions, she tells families. Listen carefully to your parents’ concerns and let them know you’re trying to help them accomplish their goals, not impose your agenda.

“It’s often helpful to say to your parents ‘I’m doing this for you; I’d like you to do something for me,’” Frances said. “People who are good parents perk up on that one and will ask, ‘OK, what can I do for you?’ Then you can tell them, ‘You can let me help you more.’”

Let them know you’re on their side. Denise Brown was convinced her parents, Roger and Sally Loeffler, were making a terrible decision. In the previous year, Roger, 84, had been diagnosed with bladder and prostate cancer and undergone extensive surgery. Sally, 81, had suffered three internal bleeds and had one-third of her stomach removed.

Brown didn’t think they could live on their own anymore, and her parents had moved into a retirement community upon her recommendation. But then, at a family meeting, her mother stood up and said, “I’m not dying in this dump. I hate it here.” As Brown and her siblings turned to their father, he said, “I’ll do whatever your mom wants.”

When her parents decided to move to an apartment, Brown was confrontational. “I raised my voice and said, ‘This is not good, this is terrible,’” she said. “They were shocked, but they said ‘It doesn’t matter; this is what we’re going to do.’”

As Brown thought about her reaction, she realized she thought her parents would be safer and have a more “gentle” death in the retirement community. “Then it occurred to me—this wasn’t what my parents wanted. They valued their independence. It’s their decision about how the end of life plays out.”

It doesn’t work to try to communicate when your parents are tired or angry. 

Brown let her parents know she’d respect their wishes but would need to set limits. Her work—Brown is the founder of www.CareGiving.comhad to be a priority, and her parents would need to arrange other assistance if she couldn’t be available. (Brown’s two brothers and sister help out.) And they’d have to be willing to talk openly about how their choices were affecting her.

What doesn’t work: trying to communicate when any one of them is tired or angry. “We never get anywhere,” Brown said. “Everybody gets defensive and shuts down.”

What does work: “Asking them questions like how do you think we should try to solve this problem? It’s interesting to hear their answers, and it makes working together so much easier.”

Stop expecting your parents to be as they used to be. After her father’s death, Loi Eberle was distraught when her mother, Lucille Miller, became involved with a man she and her siblings didn’t like. With his encouragement, Miller invested in real estate and lost a great deal of money.

But nothing Eberle or her siblings said could convince her mother that this relationship was destructive.

Eberle struggled with resentment and anger as her mother’s needs escalated after a heart attack and a diagnosis of myasthenia gravis, a severe neurological disease. “Mom and I had this love/hate relationship all my life, and there was a huge need for healing in this relationship,” she said.

In 2012, Eberle moved Miller, then 89, from her longtime home in Minneapolis to a nursing home in northern Idaho, near where Eberle lives. Gradually, she realized that her mother “had transitioned to being someone else”—someone who was vulnerable and at her life’s end.

“I think for a long time I had this idea that I was going to help Mom come back to who she was, and I spent a lot of time trying to do that,” Eberle said. “I finally had to forgive myself for failure and understand that this is the life process.”

With this shift in perspective, emotional tension dissipated. “When I’d visit, my mother was always so happy to see me,” Eberle said. Miller died in March 2017 at age 94.

Letting go of unrealistic expectations can defuse conflicts. This is the final stage of your journey with your parents. Try to put angst to one side and help make this time meaningful for them and for you. Most of all, your parents want to feel emotionally connected and accepted, even in a diminished state.

 

Write Your Own Obituary

It’s a chance to sum up your legacy and have the very last word

When Susan deLarios’s mother passed away, she had to scramble to finish the obituary before the funeral. By contrast, when her father died a few years earlier, his obituary was already done—he had written it himself. Given how much easier that made life for her, deLarios said, “Now I tell people: you need to write your obit.” 

A growing number of people are doing just that: they’re crafting their own obituaries as a gift to their families and as a way of having the last say in summing up their lives. Some write them when death is imminent; others prepare them as an exercise in contemplating mortality. 

Whatever the motivation, writing your own obituary ensures the facts are correct, relieves your family of one of the more difficult tasks of the funeral arrangements and allows you to communicate key wishes, such as where friends and family should direct memorial donations.

Self-obits are part of a broader phenomenon: growing cultural acceptance of talking about death. The same “death positive” movement that has led people to gather in Death Cafes to talk about passing, or to read bestselling books like Atul Gawande’s Being Mortal (2015), is also encouraging people to prepare the last word on their own lives. 

While USA Today dubbed them “selfie obits,” self-obits are much more than narcissistic exercises, according to Frank Joseph, a rabbi serving four congregations in Texas. “A prewritten obit relieves a lot of stress for the family during a stressful time. And it ensures that the loved one is being remembered exactly for what they wanted to be remembered for.”

Having the Last Say

When journalist Ken Fuson passed away in early 2020, friends alerted his family that he’d likely written his own obituary. Fuson taught writing classes; his first assignment to students was to write their own obituaries. 

After cracking the passcode on Fuson’s computer, family members did indeed find an obituary written in Fuson’s distinctive, funny voice. The obit ticked off his many journalism awards, followed by a humorous crack: “No, he didn’t win a Pulitzer Prize, but he’s dead now, so get off his back.” Fuson’s son, Jesse, posted the obituary on Facebook—it was long and too costly to print in the Des Moines Register, where Fuson worked for years. The obit went viral. Major news outlets picked up the story. 

Don’t store your obit in a password-protected computer or a safe deposit box. 

“It was really awesome to read someone’s own thoughts on their life after they had died,” Jesse Fuson said. “You could see the humor shine through. It was just a great thing to be left with, not to mention the partial fame it created, which was hilarious in its own way. Dad would be rolling in his urn if he had known his obit was on Fox News.” 

Fuson’s story offers an important caveat: if you write your own obit, you must tell your family or friends that you did so and tell them how to access it. Don’t store it on a password-protected computer (unless you share that password) or in a safe deposit box, which may be sealed temporarily after death.

“Make sure you’ve told all of your children or other next of kin that you’ve done this,” advised Keely Gilham, a funeral director in Arlington, TX. “Make each of them a folder with all of your final wishes, including copies of the obit as well as other important docs, such as your will, preplanned funeral arrangements or life insurance policy.”

A Chance to Review

Fifteen years ago, Cindy Kyle sat down with a glass of wine and spent an evening completing an online form with her final wishes, including a section for her obituary. Although she was in her 40s at the time and in good health, it felt natural for a “dreadfully organized person” who keeps her affairs in order. She listed her family members and details of her schooling, work history, special interests and hobbies, and added words of gratitude for important people in her life.

Instead of being upsetting, she said, “I had a blast. It was a way of summarizing the joys and accomplishments of my life, to think about what’s important and what I want people to know about me.” 

Resources abound to help self-obit writers get started. ObitKit: A Guide to Celebrating Your Life (2009) by Susan Soper is a workbook for recording important facts and life events as well as end-of-life wishes. Legacy.com, an online publisher of obits, offers an extensive archive of articles on crafting an obituary, as well as a compilation of examples of auto-obits. Websites for end-of-life planning, such as Everplans.com, provide places to upload and store an obit (along with other key documents) as well as checklists of information to consider for inclusion. 

Most obituaries typically include basic information such as the deceased’s surviving family members, religious and organizational affiliations, career and other accomplishments, as well as details on the funeral. Checklists, templates and step-by-step guides abound online. But keep in mind that there’s nothing that dictates what a self-obit writer must include. (Consider the humorous, two-word self-obit of 85-year-old Douglas Legler: “Doug Died.”)

It’s not a resume. It’s a representation of how you lived.

— Alan Gelb

Writing your obituary can serve as a memento moripractice for confronting your mortality and taking stock. For some, it spurs positive life corrections, said Joseph, the rabbi. He cited the example of Alfred Nobel, the inventor of dynamite. After reading his own obituary (published in error), which called him a “merchant of death,” Nobel bequeathed his fortune to institute the Nobel Prize. As he hoped, he’s now remembered for the Nobel Peace Prize, rather than for his invention. 

A life-review writing exercise benefits people at any age, said Alan Gelb, author of Having the Last Say, Capturing Your Legacy in One Small Story (2015.) After observing how high school students benefited from writing college application essays, he created prompts for similar writing exercises for older people, which he dubbed “Last Says.” 

To maximize readership and create an interesting tale, Gelb encourages writers of self-obits to look for a narrative arc and to lead off with a statement that captures their essence. 

“Don’t try to tell your entire life story or get hung up on having to cover everything,” he said. “It’s not a resume. It’s a representation of how you lived.” 

An obituary can be funny or serious, short or long, factual or more contemplative. Joan Calhoun’s in-laws wrote their own obits, which were published when they passed away just seven days apart. Her mother-in-law’s obit was short and sweet; her father-in-law’s was lengthy and full of details. Each reflected their respective personalities. 

“That was them,” Calhoun said. “That’s how they were. She was quiet; he was a storyteller who never met a stranger. I just think that [writing one’s obit] is a wonderful thing to do.”

Considering the Cost

In her self-written obituary, comic writer Jane Lotter quipped, “I’d tell a few jokes, but they charge for these listings by the column inch.” Generally, prewritten obituaries won’t save families money. For one thing, many funeral homes will prepare a basic obit (based on information the family provides) as part of the overall cost of the funeral package; others may charge a nominal fee. 

The biggest cost is publishing the obit, and often there’s sticker shock. Newspapers typically charge per word or per line; a short obituary can easily run $200-$600 in a major market paper, whereas a long one can cost upward of $1,000. A photo adds to the cost. 

Note that newspaper editors distinguish obituaries written by a reporter (typically for locally prominent people) from the paid write-ups provided by the deceased’s family or a funeral home. While newspapers publish reporter-written obituaries at no charge, families usually have no control over what’s included in the final story.  

Some newspapers and funeral homes post obituaries online for a nominal fee ($50-$100) regardless of length. If budgets are limited, Gilham advises families to publish a brief obit in the newspaper’s print edition, with basic facts and funeral arrangements, and a longer version online. Bottom line: keep in mind that a long obit could be costly. 

Taking Control

Toward the end of his life, Reid Coleman worried that family conflict would arise over the planning of his funeral and obituary, given one relative’s tendency toward intrusiveness. To pre-empt that, he wrote his own obituary and planned his funeral in detail. It worked—his wife, Kate Coleman, was able to execute his wishes and fend off potential meddling. 

However, Coleman trusted his wife to see things through on his behalf. If you don’t have a reliable next of kin who will follow your wishes, you should enlist legal advice if it’s imperative to have your self-obit published as is. Laws vary by state; in some states it may be possible to appoint an agent to handle funeral and burial details, including the obituary. 

Don’t include your obituary in your will, because it may not be discovered until it’s too late. Funerals (and the publication of an obituary) generally take place immediately after death and before an executor takes control of the deceased’s estate. 

But keep in mind that total control isn’t always a positive. Because most people don’t always see themselves as fully as others do, a self-written obit may be limited. 

That’s one slight regret that Kate Coleman has about her husband’s self-obit: he didn’t brag about himself enough. He didn’t share how he devoted the latter half of his career to reducing medical errors. The obit chronicled his career but failed to mention that he developed a hospital bracelet that uses scannable codes to prevent mistakes. 

“He was a ‘just the facts’ guy and the obit reflected that,” she said. “But I got cards from his colleagues talking about his accomplishments and how meaningful they were.” 

Looking back, deLarios often thinks of things she wishes she’d included in her mother’s obituary but overlooked due to lack of time. But she’s certain her father’s obit included everything important to him, including details about his military service and his involvement in the Masons. 

“That floored me,” she said. “I would’ve never thought of putting that in his obit. Reading his words after he was gone, and seeing what he considered was important, was very profound.”

Health Care Costs: Want an Estimate? Good Luck with That

But there are ways to avoid unpleasant surprises and to lower costs

When Linda Stallard Johnson’s husband had pain in his shoulder, he suspected he might be having a heart attack. His sister had just had one, with similar symptoms. The couple went to a hospital emergency room, where he underwent an EKG, blood tests, a chest X-ray and a second EKG—all, normal. As a precaution, the physician on duty wanted to admit him for a stress test the next morning. But when the couple asked how much an overnight stay might cost, nobody had an answer.

“We even called the billing office and they sent a staff person down to the room, who could not provide us with any information,” Johnson said. 

Unsure what Medicare covered and fearful the bill might prove financially crippling, the couple left the hospital, despite the doctor’s warnings. They were on edge until he finally took the stress test several days later at an outpatient clinic—also, normal. 

The Johnsons’ experience mirrors a problem faced by many Americans: a frustrating lack of transparency in the pricing of medical services and procedures.

Health care costs are not only sky-high, they’re unpredictable. There’s a wide disparity in what hospitals charge, even for routine procedures, and pricing is anything but transparent. Patients who ask for price estimates in advance often get nowhere. Insured patients must navigate a complex array of pitfalls: finding in-network providers, avoiding hidden costs or services that aren’t covered, minimizing out-of-pocket costs. Even those with good insurance may be slammed with “balance bills”—charges for services from out-of-network providers that can run into tens or even hundreds of thousands of dollars. Those without insurance can easily end up bankrupt after a single trip to the hospital. 

Faced with disease, we are all potential victims of medical extortion.

Elisabeth Rosenthal, MD

Rosemary Hinojosa, 68, ran into that problem several years ago when she fell and injured her back while visiting relatives in another city.  She was transported to the nearest hospital, which was out of network for her employer-provided health insurance plan. When she received an $87,000 bill, the insurer refused to pay, arguing that she was responsible for the bill because she didn’t choose an in-network provider.  

“Faced with disease, we are all potential victims of medical extortion,” wrote Elisabeth Rosenthal, MD, in An American Sickness: How Healthcare Became Big Business and How You Can Take It Back (2018).

Older adults are particularly vulnerable. Compared to younger people, they tend to need more medical care, the cost of which represents a larger portion of their overall cost of living. Many live on a fixed income and can’t manage unexpected medical bills or exorbitant drug prices. Those who are near retirement may not be able to bounce back from a big bill. And while insurance and medical billing are confusing for people of any age, they can be even more so for an older person who’s not tech savvy, or who’s dealing with memory loss, hearing loss or other disabilities or who’s reluctant to question a doctor’s authority. 

This lack of transparency in health care costs “places an unfair burden on everybody, but it’s especially difficult for older Americans,” said Cindi Gatton of Pathfinder Patient Advocacy Group, which helps patients navigate health care and medical billing. 

Perhaps the most vulnerable are those ages 50 to 64 who lost their insurance through loss of a job and can’t afford to purchase a plan, according to Lynda Ender, AGE director with the Senior Source in Dallas. Ditto for those 65 and up who don’t qualify for Medicare—for example, immigrants who have no work history in the United States or who are not citizens. 

How We Got Here

How do medical providers get away with this? 

For one thing, insurance has traditionally insulated patients from pricing. Insurance paid the bill; patients often weren’t even aware of the amount paid. 

Aside from Medicare, which sets rates for each treatment and procedure, there’s no regulation that requires doctors and hospitals to keep pricing reasonable or to disclose prices before sending the bill. 

“We always have the right to ask, but there are no laws requiring anyone to give you a price in advance,” said Gatton. 

The pricing system that has evolved in hospitals is so complex, arbitrary and labyrinthine that it’s almost unknowable. Hospitals don’t price procedures based on the actual costs to deliver them; some hospital administrators aren’t even aware of what those costs are. Instead, hospitals have traditionally set prices based on what the market will bear—while keeping pricing data a closely guarded trade secret. Hospitals maintain a retail price list called the chargemaster but, like “sticker” prices on new cars, almost no one actually pays those prices. Insurance companies negotiate lower prices. Often, uninsured patients can negotiate lower prices too, but many don’t know that. 

Imagine if you paid for an airplane ticket and then got separate and inscrutable bills from the airline, the pilot, the copilot, and the flight attendants

— Elisabeth Rosenthal, MD

Many physicians stay out of the billing process and as a result are unaware of the costs of tests they routinely prescribe or whether they’re in-network or out-of-network for their patients. 

Sometimes, providers simply can’t predict an exact price, only a price range. For example, a gastroenterologist might charge a standard price for a routine screening colonoscopy, but if polyps are discovered during the surgery, the procedure becomes a diagnostic colonoscopy, which commands a higher price. 

Finally, billing is piecemeal. Surgeons may know how much they charge for a specific procedure but have no idea what a typical patient ends up paying after charges are added for the anesthesiologist, the hospital facility fee and any blood work, supplies and medications. 

“Imagine if you paid for an airplane ticket and then got separate and inscrutable bills from the airline, the pilot, the copilot, and the flight attendants,” wrote Rosenthal. “That’s how the healthcare market works.” 

What’s the Solution?

Likely it’ll take a major, federally mandated overhaul of the medical system to fix this problem, but that’s unlikely, given that the medical and pharmaceutical lobbies dwarf the defense lobby. President Trump has instructed federal agencies to develop rules requiring disclosure of hospital prices in consumer-friendly, electronic form, including “list prices” as well as the discounted prices that hospitals negotiate with insurers. However, the rollout is still likely years away and is already facing challenges in court.

Some efforts are underway at the state level to improve transparency and protect consumers. New Hampshire, for example, provides an online database of quality and cost, searchable by procedure and for individual doctors and clinics, which are required to provide the information. In Texas, the legislature passed a law (SB 1264) aimed at providing relief to those slapped with balance bills—surprise medical bills that fall on patients when they have (often unknowingly) seen out-of-network providers. 

Patients can take steps to minimize their out-of-pocket expenses. However, the strategy depends on whether the patient has private insurance, Medicare or no insurance at all. 

For those covered by Medicare, price shopping generally won’t save money. Medicare sets rates for services and, in most cases, forbids providers from billing patients for additional charges. 

Uninsured patients can sometimes negotiate a lower price in advance, especially if they pay up front in cash.

For those with employer-paid or individual private insurance, price shopping becomes complicated. The objective isn’t necessarily to find the lowest price; it’s to find the provider who can provide the service at the lowest out-of-pocket cost. Typically, that means calling the insurance company (or consulting its website) to locate a doctor or hospital that’s in network, in which case the insurer will cover all, or a higher percentage, of the cost. 

Keep in mind too that even if patients choose an in-network physician and an in-network hospital, they may still see providers (such as an anesthesiologist) who are out of network, who may then charge them at the retail rate. 

For those with no insurance, price shopping is critical. Uninsured hospital patients not only get stuck paying the bills out of pocket, they’re more likely to get billed those “sticker” prices. On the other hand, it’s often easier for uninsured patients to negotiate a “cash” price in advance, especially if the patient pays up front. Also, some urgent care centers, such as CareNow, pledge to provide prices up front (usually after the patient is evaluated but before treatment begins). Cash prices aren’t cheap but are usually closer to what large insurers pay. Providers are more willing to do this with cash-paying customers, in part because they avoid the cost and hassle of obtaining reimbursement from insurers.

For those who can’t afford insurance and can’t pay cash prices, there are few good options. Many must rely on county hospitals that accept patients regardless of ability to pay. Patients with low incomes and few assets may qualify for Medicaid; states provide this coverage and requirements vary.

How to Price-Shop 

When she fell and injured her hand, Sheryl Monnier decided to call to check the price at a nearby urgent care center before going in for an X-ray. The first person she spoke to refused to provide a price. She called again, waited on hold, got transferred to a supervisor and finally got a number: $111. 

While her insurer may cover all or part of that cost, Monnier thinks it’s important for patients to insist on getting prices in advance.

“I know that the charges my insurance company pays are simply passed along as higher premiums,” she said. If more consumers insist on prices in advance, “market pressure will encourage medical businesses to make the info easily available so consumers can make wise choices.” 

But as Monnier’s experience shows, price shopping takes persistence and patience. Those who wish to price-shop a procedure can start at HealthCareBlueBook.com to get a ballpark price range for their local zip code, then call the provider’s office. The process takes persistence. If the office person says, “I don’t know,” for example, the patient may need to ask, “Who does?” 

Getting a price may also require multiple calls. “Very often, you need to talk to more than one vendor to get the whole cost of a treatment,” said Linda Beck, who provides elder and health-care advocacy. “If you need knee surgery, for example, you’ll need to get estimates from the surgeon, the anesthesiologist, the radiologist and the facility.” 

The biggest challenge for avoiding unexpected costs occurs when the patient becomes sick or injured and starts treatment. Then, it’s up to the patient to ask each provider whether he or she is in network. Even if the hospital is in network, many physicians, radiologists and other providers are contractors who may not be in that hospital’s network. 

When you’re in the hospital, keep track of every service, test and medication you receive. Errors in billing are astonishingly common.

“There may not be much you can do to avoid out-of-network care if you’re in the emergency room, because there may be no in-network providers available, but at least you’ll know the bills are coming,” Beck said.

While in the hospital, experts advise, patients should keep track of every service, test and medication received, to help later identify any charges that don’t belong on the bill. “An astonishing percentage of bills have errors,” said Beck. 

But keeping tabs on medical care isn’t easy for someone like Sophia Dembling, 61, who has undergone almost a year of treatment for amyloidosis, a rare, systemic disease—treatment including chemotherapy and a stem-cell transplant. It’s challenging enough to stay on top of her medications and doctor appointments while managing fatigue, nausea and other side effects. 

“I’m sure I should be more vigilant, but it just makes me tired,” she said. 

On top of that, Dembling occasionally receives big bills that providers claim she’s responsible for, even though she has met her maximum out of pocket and deductibles for the year. So far, she’s been able to sort them out, but only after hours on the phone with providers’ billing offices. The hassle isn’t helping her heal. 

“It’s stress on top of stress,” she said.

Finally, for patients who are slapped with a big bill, there’s almost always room to negotiate. Consider enlisting a health advocate, who can help negotiate a big medical bill, for a fee. (Some charge by the hour; others charge a percentage of the money saved.) AdvoConnection.com provides listings of certified advocates based on location.

Those with employer-provided insurance can enlist help from their human resources department. That’s what Hinojosa did after getting that $87,000 bill for the out-of-network emergency surgery and hospital stay. With help from her employer’s medical-benefits office, Hinojosa appealed the bill, arguing that she had to opt for out-of-network care, given the urgency of her injury. It took some effort, but she eventually prevailed.

“I won all the appeals that I had and ended up paying only $100,” she said. 

Is Suicide Ever Simply a Rational Choice?

Some older people are discussing that—in secret

Is suicide a rational response when people just want to control when and how they die, or when they’re facing future health problems, like dementia, that they fear will be intolerable? And should that kind of suicide be legalized? In this article written for Kaiser Health News, KHN correspondent Melissa Bailey explores both sides of these questions. Her story ran on the KHN website on June 25, 2019, and was also posted on the Washington Post.

Ten residents slipped away from their retirement community one Sunday afternoon for a covert meeting in a grocery store cafe. They aimed to answer a taboo question: When they feel they have lived long enough, how can they carry out their own swift and peaceful death?

The seniors, who live in independent apartments at a high-end senior community near Philadelphia, showed no obvious signs of depression. They’re in their 70s and 80s and say they don’t intend to end their lives soon. But they say they want the option to take “preemptive action” before their health declines in their later years, particularly due to dementia.

More seniors are weighing the possibility of suicide, experts say, as the baby boomer generation—known for valuing autonomy and self-determination—reaches older age at a time when modern medicine can keep human bodies alive far longer than ever before.

The group gathered a few months ago to meet with Dena Davis, a bioethics professor at Lehigh University who defends “rational suicide”—the idea that suicide can be a well-reasoned decision, not a result of emotional or psychological problems. Davis, 72, has been vocal about her desire to end her life rather than experience a slow decline due to dementia, as her mother did.

The concept of rational suicide is highly controversial; it runs counter to many societal norms, religious and moral convictions and the efforts of suicide prevention workers who contend that every life is worth saving.

“The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common,” said Dr. Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in … suicide. That’s particularly dangerous with older adults because of widespread ageist attitudes, he said.

As a society, we have a responsibility to care for people as they age, Conwell argued. Promoting rational suicide “creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.”

A Kaiser Health News investigation in April found that older Americans—a few hundred per year, at least—are killing themselves while living in or transitioning to long term care. Many cases KHN reviewed involved depression or mental illness. What’s not clear is how many of these suicides involve clear-minded people exercising what Davis would call a rational choice.

Suicide prevention experts contend that while it’s normal to think about death as we age, suicidal ideation is a sign that people need help. They argue that all suicides should be avoided by addressing mental health and helping seniors live a rich and fulfilling life.

Some people are determined to choose the way they die, but then they become too confused to follow through. 

But to Lois, the 86-year-old woman who organized the meeting outside Philadelphia, suicides by older Americans are not all tragedies. Lois, a widow with no children, said she would rather end her own life than deteriorate slowly over seven years, as her mother did after she broke a hip at age 90. (Lois asked to be referred to by only her middle name so she would not be identified, given the sensitive topic.) In her eight years at her retirement community, Lois has encountered other residents who feel similarly about suicide. But because of stigma, she said, the conversations are usually kept quiet.

Lois insisted her group meet off-campus at Wegmans because of the “subversive” nature of the discussion. Supporting rational suicide, she said, clashes with the ethos of their continuing care retirement community, where seniors transition from independent apartments to assisted living to a nursing home as they age.

Seniors pay six figures to move into the bucolic campus, which includes an indoor heated pool, a concert hall and many acres of wooded trails. They are guaranteed housing, medical care, companionship and comfort for the rest of their lives.

“We are sabotaging that,” Lois said of her group. “We are saying, thank you very much, but that’s not what we’re looking for.”

Carolyn, a 72-year-old member of the group who asked that her last name be withheld, said they live in a “fabulous place” where residents enjoy “a lot of agency.” But she and her 88-year-old husband also want the freedom to determine how they die.

A retired nurse, Carolyn said her views have been shaped in part by her experience in the HIV/AIDS epidemic. In the 1990s, she created a program that sent hospice volunteers to work with people dying of AIDS, which at the time was a death sentence.

She said many of the men kept a stockpile of lethal drugs on a dresser or bedside table. They would tell her, “When I’m ready, that’s what I’m going to do.” But as their condition grew worse, she said, they became too confused to follow through.

“I just saw so many people who were planning to have that quiet, peaceful ending when it came, and it just never came. The pills just got scattered. They lost the moment” when they had the wherewithal to end their own lives, she said.

Carolyn emphasized that she and her husband do not feel suicidal, nor do they have a specific plan to die on a certain date. But she said that while she still has the ability, she wants to procure a lethal medication that would offer the option for a peaceful end in the future.

One school of thought is that even mentioning that [suicide] could be rational is an ageist concept. It’s an important point to consider.

—Meera Balasubramaniam, MD

“Ideally, I would have in hand the pill, or the liquid or the injection,” she said. She said she’s embarrassed that, as a former nurse, she doesn’t know which medication to use or how to get it.

Maine recently became the ninth state to allow medical aid in dying, which permits some patients to get a doctor’s prescription for lethal drugs. That method is restricted, however, to people with a terminal condition who are mentally competent and expected to die within six months.

Patients who aren’t eligible for those laws would have to go to an “underground practice” to get lethal medication, said Dr. Timothy Quill, a palliative care physician at the University of Rochester School of Medicine. Quill became famous in the 1990s for publicly admitting that he gave a 45-year-old patient with leukemia sleeping pills so she could end her life. He said he has done so with only one other patient.

Quill said he considers suicide one option he may choose as he ages. “I would probably be a classic [case]—I’m used to being in charge of my life.” He said he might be able to adapt to a situation in which he became entirely dependent on the care of others, “but I’d like to be able to make that be a choice as opposed to a necessity.”

Suicide could be as rational a choice as a patient’s decision to end dialysis, after which the patient typically dies within two weeks, he said. But when patients bring up suicide, he said, it should launch a serious conversation about what would make their life feel meaningful and their preferences for medical care at the end of life.

Clinicians have little training on how to handle conversations about rational suicide, said Dr. Meera Balasubramaniam, a geriatric psychiatrist at the New York University School of Medicine who has written about the topic. She said her views are “evolving” on whether suicide by older adults who are not terminally ill can be a rational choice.

“One school of thought is that even mentioning the idea that this could be rational is an ageist concept,” she said. “It’s an important point to consider. But ignoring it and not talking about it also does not do our patients a favor, who are already talking about this or discussing this among themselves.”

In her discussions with patients, she said, she explores their fears about aging and dying and tries to offer hope and affirm the value of their lives.

These conversations matter because “the balance between the wish to die and the wish to live is a dynamic one that shifts frequently, moment to moment, week to week,” said Conwell, the suicide prevention expert.

People who attempt suicide and survive may end up confined in a psychiatric hospital, which is the opposite of what they’re trying to achieve.

Carolyn, who has three children and four grandchildren, said conversations about suicide are often kept quiet for fear that involving a family member would implicate them in a crime. The seniors also don’t want to get their retirement community in trouble.

In some of the cases KHN reviewed, nursing homes have faced federal fines of up to tens of thousands of dollars for failing to prevent suicides on-site.

There’s “also just this hush-hush atmosphere of our culture,” said Carolyn. “Not wanting to deal with judgment—of others, or offend someone because they have different beliefs. It makes it hard to have open conversations.”

Carolyn said when she and her neighbors met at the cafe, she felt comforted by breaking the taboo.

“The most wonderful thing about it was being around a table with people that I knew where we could talk about it and realize that we’re not alone,” Carolyn said. “To share our fears—like if we choose to use something, and it doesn’t quite do the job, and you’re comatose or impaired.”

People who attempt suicide and survive may end up in a psychiatric hospital “with people watching you all the time—the complete opposite of what you’re trying to achieve,” Quill noted.

At the meeting, many questions were practical, Lois said.

“We only get one crack at it,” Lois said. “Everyone wants to know what to do.”

Davis said she did not have practical answers. Her expertise lies in ethics, not the means.

Public opinion research has shown shifting opinions among doctors and the general public about hastening death. Nationally, 72 percent of Americans believe doctors should be allowed by law to end a terminally ill patient’s life if the patient and his or her family request it, according to a 2018 Gallup poll.

Lois said she’s seeing societal attitudes begin to shift about rational suicide, which she sees as the outgrowth of a movement toward patient autonomy. Davis said she’d like to see polling on how many people share that opinion nationwide.

“It seems to me that there must be an awful lot of people in America who think the way I do,” Davis said. “Our beliefs are not respected. Nobody says, ‘OK, how do we respect and facilitate the beliefs of somebody who wants to commit suicide rather than having dementia?’”

If you or someone you know has talked about contemplating suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 or use the online Lifeline Crisis Chat, both available 24 hours a day, seven days a week.

People 60 and older can call the Institute on Aging’s 24-hour, toll-free Friendship Line at 800-971-0016. IOA also makes ongoing outreach calls to lonely older adults.

The True Cost of Growing Old in America

The Elder Index reveals what older people spend, just to meet their basic needs and age in place

Jan Mutchler, PhD—one of the creators of the index—explains here what it is and why it’s so important, both for those deciding public policy and for individuals planning for retirement. The index provides a realistic look at what older people all over the country actually need to spend to get by without help from family, charities or the government. The Silver Century Foundation has been a longtime supporter of the Elder Index. Mutchler is the director of the Center for Social and Demographic Research on Aging in the Gerontology Institute at the University of Massachusetts. Her article appeared first at The Conversation on Dec. 5, 2019.   

The US population is aging at such a rate that within a few years, older Americans will outnumber the country’s children for the first time, according to census projections. But rising rents, health care and other living costs mean that for many entering their retirement years, balancing the household budget can be a struggle.

To get a better understanding of how much of a struggle, a team at the University of Massachusetts Boston established a benchmark against which to measure the financial security of Americans aged 65 and over. 

Jan Mutchler, PhD, is professor of gerontology and director of the Center for Social and Demographic Research on Aging in the Gerontology Institute at the University of Massachusetts.

What is the Elder Index?

Jan Mutchler: The Elder Index is a measure looking at how much income is needed for older people to maintain independence and meet their daily living costs while staying in their own homes. It is based on the bare-bones budgets of singles and couples aged 65 or over. For 2019, we found that the average income needed by an older individual in rental housing to meet all basic needs was $25,416, and for a couple in rental housing, it was $36,204. The index breaks this figure down, county by county.

Why did you create it?

Mutchler: The brainchild of researchers at the Gerontology Institute at the University of Massachusetts Boston, including myself, the index was created to provide a realistic benchmark for what it costs older people to get by and remain independent. It can help guide and support the development of policies meant to promote the well-being of older adults, and also serve as a financial planning tool for older people and their families, to help alleviate economic insecurity.

How does economic insecurity differ from poverty?

Mutchler: The federal poverty line is widely used to summarize hardship and insecurity, but we know that the benchmark is way below what an adequate lifestyle requires. The Elder Index defines economic security as the income level at which older people can cover basic and necessary living expenses without relying on loans, gifts or income support programs like food subsidies and housing assistance. It is also uniquely focused on thresholds specific to older adults’ expenses.

What are the major living costs faced by older Americans?

Mutchler: Housing and health care top the list. Medical bills, in particular, can be very expensive, especially as people move into their 70s and 80s and encounter chronic conditions that require ongoing treatment and medications. For couples, health care is especially costly—there is no family plan for Medicare, meaning couples pay twice the individual rate. Social Security plays a critical role in meeting these costs. 

Many older people also draw on pensions, savings or other assets to pay the bills or continue to work into later life, at least on a part-time basis. But even so, a significant number of older Americans are forced to make ends meet by holding back on the health care they need, going into debt or using other strategies that do not support health and well-being.

How big a problem is economic insecurity among the elderly?

Mutchler: Our research shows that in 2019, half of older Americans living on their own lacked the income needed to pay for their basic needs, as did 23 percent of couples. Taken together, we estimate that more than 10 million people aged 65 or older and living independently have incomes below the Elder Index. In short, it is a big problem.

Who are most financially vulnerable among Americans over 65?

Mutchler: Older people in regions with low average incomes, such as in Mississippi and Louisiana, are vulnerable. But there is also a problem in more affluent areas that have seen jumps in the cost of living and housing, such as in parts of Massachusetts and Vermont, and notably in the San Francisco area. 

Older people who live alone also tend to be at higher risk. To some extent, this just reflects economies of scale in their household budgets. But people living alone are also more likely to be women and are older, on average, which would also put them at a higher risk. 

It is important to note that the vulnerability seen in later life is a reflection of lifelong disparities in the ability to earn an adequate wage, accumulate Social Security credits and save for retirement. For these reasons, women and older people of color both are more likely to be at risk.

What measures can be taken to better support older Americans?

Mutchler: Any effort has to include protecting and enhancing our Social Security system, as many older people rely on it for most or all of their income. Likewise, Medicare, which forms the basis for receiving medical care for nearly all older Americans. Meanwhile, subsidies and benefits targeting low-income older people can really help. But these programs need to be widened, as typically the only people eligible are at or very near poverty levels, rather than being economically insecure. 

Communities, too, need to better promote economic security through affordable senior housing and making sure older residents receive the benefits available to them. Finally, we really need more conversations about what the true cost of retirement living is and how people can plan for that. At present, people are not adequately informed. As a result, too many people enter retirement without financial security.

 

Has Your Doctor Asked You about Climate Change?

Many medical societies consider it a health emergency

Climate change is exacerbating health problems for many patients, but some doctors hesitate to mention it. Martha Bebinger digs into the topic in a story produced as part of a partnership that includes Boston public radio station WBUR, NPR and Kaiser Health News (KHN). Bebinger’s article was posted on the KHN website on July 19, 2019.

When Michael Howard arrived for a checkup with his lung specialist, he was worried about how his body would cope with the heat and humidity of a Boston summer.

“I lived in Florida for 14 years, and I moved back because the humidity was just too much,” Howard told pulmonologist Mary Rice, MD, as he settled into an exam room chair at a Beth Israel Deaconess HealthCare clinic.

Howard, 57, has chronic obstructive pulmonary disease (COPD), a progressive lung disease that can be exacerbated by heat and humidity. Even inside a comfortable, climate-controlled room, his oxygen levels worried Rice.

Howard reluctantly agreed to try using portable oxygen, resigned to wearing the clear plastic tubes looped over his ears and inserted into his nostrils. He assured Rice he has an air conditioner and will stay inside on extremely hot days. The doctor and patient agreed that Howard should take his walks in the evenings to be sure he gets enough exercise without overheating.

Then Howard turned to Rice with a question she didn’t encounter in medical school: “Can I ask you: Last summer, why was it so hot?”

Rice, who studies air pollution, was ready.

“The overall trend of the hotter summers that we’re seeing [is] due to climate change,” Rice said.

For Rice, connecting climate-change consequences—heat waves, more pollen, longer allergy seasons—to her patients’ health is becoming routine. She is among a small but growing number of doctors and nurses who discuss those connections with patients.

In June, the American Medical Association, American Academy of Pediatrics and American Heart Association were among a long list of medical and public health groups that issued a call to action, asking the US government, business and leaders to recognize climate change as a health emergency.

The World Health Organization calls climate change “the greatest health challenge of the 21st century,” and a dozen US medical societies urge action to limit global warming.

It feels like once [the allergy season] starts in the springtime, it doesn’t end until there’s a killing frost. 

—Mary Heafy

Some medical societies provide patients with information that explains the related health risks. But none have guidelines on how providers should talk to patients about climate change.

There is no concrete list of “do’s”—as in wear a seat belt, use sunscreen and get exercise—or “don’ts”—as in don’t smoke, don’t drink too much and don’t text while driving—that doctors can talk about with patients.

Climate change is different, said Rice, because an individual patient can’t prevent it. So Rice focuses on steps her patients can take to cope with the consequences of heat waves, such as more potent pollen and a longer allergy season.

That was Mary Heafy’s main complaint. The 64-year-old has asthma that is worse during the allergy season. During her appointment with Rice, Heafy wanted to know why her eyes and nose were running and her chest feels tight for longer periods every year.

“It feels like once [the allergy season] starts in the springtime, it doesn’t end until there’s a killing frost,” Heafy told Rice.

“Yes,” Rice nodded, “because of global warming, the plants are flowering earlier in the spring. After hot summers, the trees are releasing more pollen the following season.”

So Heafy may need stronger medicines and more air filters, her doctor said, and may spend more days wearing a mask–although the effort of breathing through a mask is hard on her lungs as well.

As she and the doctor finalized a prescription plan, Heafy observed that “physicians talk about things like smoking, but I don’t know that every physician talks about the environmental impact.”

Why do so few doctors talk about the impact of the environment on health? Besides a lack of guidelines, doctors say, they don’t have time during a 15- to 20-minute visit to broach something as complicated as climate change.

And the topic can be controversial: while a recent Pew Research Center poll found that 59 percent of Americans think climate change affects their local community “a great deal or some,” only 31% say it affects them personally, and views vary widely by political party.

I have to be honest about the science and the threat that is there, and it is quite alarming.

—Gaurab Basu, MD

We contacted energy-industry trade groups to ask what role—if any—medical providers should have in the climate-change conversation, but neither the American Petroleum Institute nor the American Fuel & Petrochemical Manufacturers returned calls or email requests for comment.

Some doctors say they worry about challenging a patient’s beliefs on the sometimes fraught topic, according to Nitin Damle, MD, a past president of the American College of Physicians.

“It’s a difficult conversation to have,” said Damle, who practices internal medicine in Wakefield, RI.

Damle said he “takes the temperature” of patients, with some general questions about the environment or the weather, before deciding if he’ll suggest that climate change is affecting their health.

Gaurab Basu, MD, a primary care physician at Cambridge Health Alliance, said he’s ready if patients want to talk about climate change, but he doesn’t bring it up. He first must make sure patients feel safe in the exam room, he said, and raising a controversial political issue might erode that feeling.

“I have to be honest about the science and the threat that is there, and it is quite alarming,” Basu said.

So alarming, Basu said, that he often refers patients to counseling. Psychiatrists concerned about the effects of climate change on mental health say there are no standards of care in their profession yet, but some common responses are emerging.

One environmental group isn’t waiting for doctors and nurses to figure out how to talk to patients about climate change.

Molly Rauch, the public health policy director with Moms Clean Air Force, a project of the Environmental Defense Fund, urges the group’s more than 1 million members to ask doctors and nurses for guidance. For example: When should parents keep children indoors because the outdoor air is too dirty? 

“This isn’t too scary for us to hear about,” Rauch said. “We are hungry for information about this. We want to know.”

 

Researchers Seek Sage Advice of Elders on Aging Issues

Feedback from vulnerable older people shapes research projects

In this article, journalist Judith Graham, a contributing columnist for Kaiser Health News (KHN), writes about the Bureau of Sages, a unique advisory board of elders, many of whom are ill, disabled or have early-stage dementia. Researchers consult them to find out what they need and ask about the best ways to involve older people in research, how to communicate with them effectively, and more. Graham’s article was posted on the KHN website on April 25, 2019.

CHICAGO — Rachel O’Conor booted up her slides and began posing questions to six older adults sitting around a table: How should primary care physicians support patients and caregivers after a diagnosis of dementia? And what stands in the way of getting adequate support?

“Please speak louder and go slower,” suggested Susanne Smith, a 75-year-old with early-stage Alzheimer’s disease.

Smith belongs to the Bureau of Sages, a group of vulnerable seniors who advise researchers about what matters to older adults, how to involve them in research about aging and how to communicate with them effectively while doing so. It’s a groundbreaking program: traditionally, ill, disabled and cognitively challenged older adults have been excluded from research and assumed to be too compromised to offer useful insights.

“The recognition that this population has something meaningful to contribute—that’s really unique,” said Robyn Stone, a former adviser to the Sages and senior vice president of research at LeadingAge, a national organization of nonprofit providers that focus on aging.

Everyone who works with older adults would do well to pay attention.

Sages groups are housed at several locations. At the Lieberman Center for Health and Rehabilitation, a nursing home in Skokie, a Chicago suburb, nearly a dozen residents meet every two weeks to discuss academic studies, issues they encounter in their daily lives and potential research projects. A similarly sized group of frail, homebound seniors in Chicago’s northern suburbs gets together virtually, via the internet.

At Northwestern University’s downtown medical campus, seven adults with dementia gather every couple of months at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease to offer feedback to researchers.

On this sunny day in mid-April, Jim Butler, 70, acknowledged it took him 18 months to accept a diagnosis of mild cognitive impairment and speak openly about it. Karen Finesilver, 68, who has Lewy body dementia, stressed the importance of bringing someone along to doctors’ appointments. “When I hear something that makes me nervous, I don’t retain it,” she explained. And Smith spoke of how important it is to feel heard by her physician: “One of the best things is when he actually listens to what I’m saying, because a lot of times doctors may know what’s going on but they do not listen.”

It’s the only time people here talk to you like you have a brain left.

—Sharon Koretsky, 73, on why she loves the meetings with researchers

O’Conor, an assistant professor at Northwestern’s Feinberg School of Medicine, had started the conversation by asking about problems that patients and caregivers face. After the discussion, she said she would focus more on “what helps people build on their strengths” because “the resilience and positivity of people really stood out today.”

The Bureau of Sages has received two rounds of funding totaling $500,000 from the Patient-Centered Outcomes Research Institute (PCORI), an organization that sponsors innovative projects that include patients in setting research priorities, designing research studies and evaluating their impact.

Unlike occasional surveys or focus groups, a standing group like the Sages can provide “valuable ongoing context about individuals’ lives” that sharpens research and makes it more relevant, said Kristin Carman, PCORI’s director of public and patient engagement.

At the Lieberman nursing home, on another April afternoon, two researchers—a physician and a biomechanical engineer—presented a project they’re working on to nine seniors, most in wheelchairs. Their prototype device would help people with compromised mobility stand up from a sitting position, a task that requires a surprising amount of coordination and strength.

“Would I be able to use this [device] if I can’t straighten my leg out all the way?” asked Sharon Koretsky, 73, who has diabetes and severe osteoarthritis and can no longer stand on her own. “If your muscles are atrophied, would this help improve your condition?” wondered Fern Netzsky, 76, who has had multiple sclerosis for 35 years and can no longer stand or walk.

Both women use what’s known as a “sit-to-stand lift”—a clunky device that helps people transfer from a bed to a chair or from a chair to a toilet seat and that requires two aides to maneuver it. Another commonly used device is a Hoyer lift, which uses a sling to help people rise.

“I hate the Hoyer: they pull it between your legs and you lay there like a big sack of potatoes with your butt hanging out,” Koretsky said. Anything that someone could strap on themselves and that could help people get up more easily with only one aide’s help would be a “wonderful idea,” she added.

One group of Sages wants researchers to investigate better training for certified nursing assistants (CNAs).

As other Lieberman residents chimed in, it became clear they wanted help with walking, not just with standing. They wanted to be able to use the device outdoors, as well as inside the facility. And safety was essential. “I would be willing to try this if I was assured I would not fall and if there was enough protection around me,” Netzsky said.

The researchers, who asked not to be identified because they are working on this project outside of their full-time jobs, said they found many of the comments helpful. Older adults are often assumed to be resistant to using technology but this group seemed quite open to technology that improves their quality of life, the physician observed.

After the meeting, Nancy Weinberg, 96, another participant, described a communication gap between researchers and nursing home residents when the Bureau of Sages began. “They were speaking ‘researchese,’ and I didn’t have any idea what they were talking about. Now they understand we don’t want to hear jargon, and they speak our language.”

With characteristic bluntness, Koretsky said she loved the Sages’ meetings, observing, “It’s the only time people here talk to you like you have a brain left.”

The Lieberman Sages are now trying to persuade researchers at Northwestern to investigate the shortage of certified nursing assistants (CNAs) and the need to better train CNAs—problems faced by nursing homes across the nation. Amy Eisenstein, director of the Leonard Schanfield Research Institute at CJE SeniorLife in Chicago and the project’s principal investigator, is working to expand the program to other locations, including Miami University in Oxford, OH, and the University of Massachusetts, Boston. CJE SeniorLife, sponsored by Chicago’s Council for Jewish Elderly, provides a variety of services to seniors and is the Bureau of Sages’ original sponsor.

(Materials that can help any organization launch a Bureau of Sages are available at the Council for Jewish Elderly’s website under the “Resources” section.)

“I think that all research on aging needs to include the voices of older adults,” Eisenstein said. “They are experts about their lives, and we need to incorporate their perspectives to make research better.”

 

When Should You Take Away an Older Person’s Cell Phone?

It’s a delicate matter that can raise ethical issues

More and more older people are comfortable with technology such as smartphones. But as some develop dementia, families must decide whether to step in and protect them from temptations online. Journalist Judith Graham, writing for Kaiser Health News (KHN), describes problems that can crop up, along with some possible solutions. KHN posted her article on September 26, 2019. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.  

At first, Robert Zorowitz, MD, thought his 83-year-old mother was confused. She couldn’t remember passwords to accounts on her computer. She would call and say programs had stopped working.

But over time, Zorowitz realized his mother—a highly intelligent woman who was comfortable with technology—was showing early signs of dementia.

Increasingly, families will encounter similar concerns as older adults become reliant on computers, cell phones and tablets: with cognitive impairment, these devices become difficult to use and, in some cases, problematic.

Computer skills may deteriorate even “before [older adults] misplace keys, forget names or display other, more classic signs of early dementia,” Zorowitz wrote recently on a group email list for geriatricians. (He’s based in New York City and [is] senior medical director for Optum, a health services company.) 

“Deciding whether to block their access to their bank accounts, stocks and other online resources may present the same ethical dilemmas as taking away their car keys,” [he said.] 

The emergence of this issue tracks the growing popularity of devices that let older adults communicate with friends and family via email, join interest groups on Facebook, visit virtually via Skype or FaceTime, and bank, shop, take courses or read publications online.

According to the Pew Research Center, 73 percent of adults 65 and older used the Internet in 2019, up from 43 percent in 2010. And 42 percent of older adults owned smartphones in 2017, the latest year for which data is available, up from 18 percent in 2013.

Already, some physicians are adapting to this new digital reality. At Johns Hopkins Medicine, Halima Amjad, MD, an assistant professor of medicine, now asks older patients if they use a computer or smartphone and are having trouble, such as forgetting passwords or getting locked out of accounts.

“If there’s a notable change in how someone is using technology,” she said, “we would proceed with a more in-depth cognitive evaluation.”

Safety can become an issue for an older person with dementia who gets emails from scammers. 

At Rush University’s Alzheimer’s Disease Center in Chicago, neurologist Neelum Aggarwal, MD, finds that older adults are bringing up problems with technology as a “non-threatening way to talk about trouble with thinking.”

“Instead of saying, ‘I have issues with my memory,’ people will say, ‘I just can’t figure out my smartphone’ or ‘I was trying to start that computer program and it took forever to get that done.’”

If the person previously used digital devices without difficulty, Aggarwal will try to identify the underlying problem. Does the older adult have problems with vision or coordination? Is she having trouble understanding language? Is memory becoming compromised? Is it hard for her to follow the steps needed to complete a transaction?

If using technology has become frustrating, Aggarwal recommends deleting apps on cell phones and programs on computers.

“The anxiety associated with ‘Oh, my God, I have to use this and I don’t know how’ totally sets people back and undoes any gains that technology might offer,” she said. “It’s similar to what I do with medications: I’ll help someone get rid of what’s not needed and keep only what’s really essential.”

Typically, she said, she recommends no more than five to 10 cell phone apps for patients in these circumstances.

When safety becomes an issue—say, for an older adult with dementia who’s being approached by scammers on email—family members should first try counseling the person against giving out their Social Security or credit card information, said Cynthia Clyburn, a social worker in the neurology division at Penn Medicine in Philadelphia.

If that doesn’t work, try to spend time together at the computer so you can monitor what’s going on. “Make it a group activity,” Clyburn said. If possible, create shared passwords so you have shared access.

But beware of appropriating someone’s passwords and using them to check email or online bank or brokerage accounts. “Without consent, it’s a federal crime to use an individual’s password to access their accounts,” said Catherine Seal, an elder law attorney at Kirtland & Seal in Colorado Springs, CO. Ideally, consent should be granted in writing.

Older adults with Alzheimer’s commonly turn away from digital devices as they forget how to use them.

With his mother’s permission, one of Zorowitz’s brothers—a physician in Baltimore—installed GoToMyPC, an application that allowed him to remotely manage her computer. He used it to reset passwords and manage items on her desktop and sometimes to order groceries online from Peapod.

Eventually, Selma Zorowitz lost interest in her computer as she slipped further into dementia and spent the end of her life in a nursing home. She died in 2014 at age 87.

Older adults with Alzheimer’s disease commonly turn away from digital devices as they forget how to use them, said Lon Schneider, MD, a professor of psychiatry and neurology at the University of Southern California.

More difficult, often, are situations faced by people with frontotemporal dementia (FTD), which affects a person’s judgment, self-awareness and ability to assess risk.

Sally Balch Hurme’s 75-year-old husband, Arthur, has FTD, diagnosed in 2015. Every day, this elder law attorney and author struggles to keep him safe in a digital world full of threats.

Hundreds of emails pour onto Arthur’s cell phone from telemarketers with hard-to-resist offers. His Facebook account is peopled with “friends” from foreign countries, all strangers. “He has no idea who they are. Some of them are wearing bandoliers of ammunition, holding their guns,” Hurme said. “It is horrific.”

Then, there’s Amazon, a never-ending source of shopping temptation. Recently, Arthur ordered four pocket translators, several watches and a large quantity of maple sugar candies for $1,000. Though returns are possible, Hurme doesn’t always know where Arthur has stored items he’s bought.

What steps has she taken to manage the situation? With Arthur’s permission, she unsubscribes him from accounts that send him emails and removes friends from his Facebook account. On his cell phone, she has installed a parental-control app that blocks him from using it between midnight and 6 a.m.—hours when he was most likely to engage in online activities. There’s also a parental-control setting on the TV to prevent access to “adult” channels.

Instead of an open-ended credit card, Hurme gives Arthur a stored-value card with a limited amount of money. She manages household finances, and he doesn’t have access to the couple’s online banking account. Credit bureaus have been told not to open any account in Arthur’s name.

If Hurme had her way, she said, she’d get rid of Arthur’s cell phone—his primary form of communication. (He has stopped using the computer.) But “I’m very sensitive to respecting his dignity and letting him be as independent and autonomous as possible,” she said. For all the dangers it presents, “his phone is his connection with the outside world, and I can’t take that away from him.”

Wearable Technology Has Great Potential

But it also presents challenges for older adults

A small wristband device is helping Randy Miltenberger prepare for a knee replacement.

His doctor wants him to strengthen his leg muscles to prepare for the upcoming surgery and rehab, so Miltenberger, 73, wears a FitBit fitness tracker. The device records his steps during his normal routine during the day; every afternoon, he walks on an indoor track until he reaches five miles.

“The FitBit gives me a goal and a way to keep me accountable,” he said. He also uses the FitBit to check his heart rate during exercise—making sure he’s working hard enough, but not too hard—and to check his resting heart rate, now a very healthy 54 beats per minute.

Miltenberger fits right in with the current trend. Tech industry observers think fitness trackers are just the tip of the iceberg of the growing array of wearable devices that could help keep older adults healthier, safer and more independent, with options ranging from heart rate monitors and medical alert devices to airbag hip belts.

Some devices already save lives, but others may fail with older adults.

Manufacturers shipped more than 172 million wearable devices worldwide in 2018, according to International Data Corporation, and that number is expected to grow to at least 250 million by 2021.

Older adults are adopting these devices at almost the same rate as the overall population; while 20 percent of Americans under 65 use wearables to track fitness, almost as many (17 percent) of those over 65 are using wearables too.

“There are vast opportunities to attack problems faced by older adults through wearables,” said Ashley Newsom Kubley, a wearable tech designer and head of the Fashion Technology Center at the University of Cincinnati.

But these devices also raise questions specific to an older population. Are they user-friendly and accessible? Can they work for those affected by reduced vision or cognitive impairment? Are they reliable enough to use for medical purposes?

“It all depends on the [older adult] and on the technology,” said Irene Hamrick, MD, chief of the Office of Geriatric Medicine at the University of Cincinnati College of Medicine. Some devices already save lives, while others can fall short in the face of some of the limitations affecting older adults.

Wide Array of Wearables

In addition to fitness trackers, the portfolio of wearable technology includes medical alert systems, which connect a user to help with the press of a button. While they’ve been available for years, newer versions incorporate features like fall detection and the ability to pair with a cell phone. Some don’t even require the press of a button—they detect a fall or a lack of motion and automatically call for help.

Other devices include:

  • Health monitors help wearers track their heart rate and blood pressure and can even spot heartbeat irregularities. Some, like BodyGuardian, will trigger a warning—sent to the wearer as well as to his or her physician—when a worrisome heartbeat is detected.
  • GPS tracking devices, such as shoe insoles or clip-on wearables, track the location of the wearer and allow family members or caregivers to locate the person quickly in an instance of wandering.
  • Some devices, like the Apple Watch, combine these functions. The newest version (Series 5) includes step counting, heart monitoring and GPS tracking, as well as fall detection and the functions of a cell phone (calling, texting, checking email).
  • Airbag hip belts are strapped around the wearer’s hips to help prevent fractures in the event of a fall. The device analyzes the wearer’s motion, detects a fall and deploys the airbags automatically before the person hits the ground.
  • Pain-relief devices, like Oska Pulse or Quell Pain Relief, treat chronic pain with low-voltage electrical current. Typically these are belts strapped around an affected area. Some are paired with cell phone apps, allowing the user to control the timing of treatment and track results.

More Independence, Increased Safety

Experts who work with older adults say wearable devices can be lifesavers. Susan Rebillet, a geriatric psychologist, has about two dozen patients who have used their medical alert buttons to call family members or 911 after a fall or a medical emergency.

“Many of my patients are absolutely able to live independently longer because of this technology,” said Rebillet. “Even if the device is never used, it really gives the older adult and the family peace of mind.”

Rebillet adds that a medical alert device also makes it easier for family members to respect an older adult’s privacy and independence. Family members are less likely to panic, for example, if the older adult doesn’t pick up her phone for a bit, relying on the device to alert them if there’s trouble.

For patients recovering from heart attacks, smartwatches customized for cardiac rehab can provide monitoring at home.

Similarly, Hamrick notes that GPS tracking devices have enabled families or law enforcement to quickly locate elders with dementia who have wandered or gotten lost.

Remote activity monitoring technology—which combines wearables with other devices like motion sensors, bed sensors and medication monitoring—may help keep tabs not only on older adults but also on the care they receive in assisted living or nursing homes, according to John Alagood, owner of the Senior Care Authority of Dallas-Fort Worth. He thinks families could be reassured if they could track, for example, when medications are administered or how often a loved one is bathed.

And, of course, wearables can make life easier for older adults. For example, Samsung tested customized smartwatches as part of cardiac rehab. The devices allowed patients to handle some of the post-attack monitoring at home and save some trips to the rehab clinic. In the pilot program, a higher percentage of those participants with the smartwatches completed the rehab.

Wearable devices can also nudge older adults to maintain healthier habits. In a 2015 study conducted by AARP, 45 percent of older adults (ages 50+) reported increased motivation for healthier living after six weeks of using a wearable activity or sleep tracker. (FitBit, for example, monitors the wearer’s motion to track deep and light sleep, as well as periods of awakening.)

But Are Wearables User Friendly?

No tech device is foolproof, even for the savviest of users. Gadgets require recharging or replacing batteries.

Many wearables must be used in tandem with an app on a smartphone. That requires the user to own a smartphone, pay monthly fees for cell phone service (which is often quite expensive) and also to have enough tech savviness to set up and navigate the apps.

Devices worn on the wrist have screens that may be too small for an older adult with visual impairment to read. There are some work-arounds—for example, a user’s progress on a FitBit can be monitored via a computer that has been modified for a visually impaired person (large screen, high contrast and large type) but that does require some tech skill to set up and navigate.

The Apple Watch offers accessibility features such as a gesture-activated speaker function for the visually impaired, a wrist tap to alert a hearing-impaired user to an incoming call or text, and even fitness-tracking options for those in wheelchairs. But the Apple Watch is also expensive, as are the associated monthly fees (either for the watch itself or for a paired iPhone). And it requires tech savvy.

Medical-alert buttons and monitoring and tracking devices work best for people with dementia early in the disease.

Some devices aren’t useful if there’s no family member or friend keeping tabs on the wearer. A GPS tracking device, for example, won’t help if no one’s at the other end to notice that an older adult has wandered away from home.

And if a user forgets to wear or activate the device, it doesn’t work at all. Rebillet recalled a patient who fell and lay on the floor for three days, even though she was wearing an alert pendant around her neck.

“She simply forgot she had it,” Rebillet said. “Possibly the fall itself traumatized her and contributed to her forgetfulness. But this woman had not shown obvious signs of dementia before the fall.”

Researchers similarly found that the remote activity-monitoring technology worked best for older adults in the early stages of dementia who were still mobile. But even then, families struggled. GPS can be less accurate in cities due to interference created by buildings, or rural areas may have limited cell or internet coverage. Alerts can be delayed or slow. The older adult might remove the wearable or turn it off.

While medical-alert, monitoring and tracking devices can allow people with memory impairment to live independently longer, many “are optimal only in a narrow window of dementia progression,” according to Hamrick.

“In early dementia, patients can still use a cell phone, which can be much less expensive than an alert button,” she said. “But as dementia progresses, patients don’t remember to push the button, even when they wear it, or don’t know what to do with the button.”

Gadget or Medical Device?

As the costs of health care skyrocket—and tech devices become more inexpensive and more powerful—many are pinning hope on the potential for wearable devices to save money. For example, a wearable tracking an older adult’s movement could alert caregivers to a developing urinary tract infection (UTI), signaled by frequent trips to the bathroom or an unusual gait due to pain. If preventive measures are taken within the first 72 hours of symptoms, that could result in savings of up to $13,000, which is the average cost of hospitalization for a patient with a UTI.

But that points to an area where wearable devices could face pushback from the FDA (Food and Drug Administration). If a smartwatch can track sleep patterns, record heart rates and monitor body temp, at what point does it become a health care device, and thus subject to stricter regulations?

“When you see every sort of technology becoming a health technology, the lines blur,” said Eri Gentry, a research affiliate at Institute for the Future. “Regulators are going to have a challenging time figuring out where to draw the line between what’s medically relevant and what’s just a smart-home device.”

Also, wearables that collect health data raise privacy questions. Where does the personal medical information go? Who has access to it and how is it being used?

Kubley cautioned that wearables should supplement, but not replace, professional medical care.

Wearable devices “can be very useful for preventative care or for correcting negative behaviors (bad posture, sleeping habits) or encouraging healthy behaviors (like taking medicines regularly),” Kubley said. “But self-diagnosis can be problematic when people rely on devices in lieu of the advice of trained medical professionals.”

Tech Shall Overcome?

However, Kubley said, these issues aren’t insurmountable. They’re pointers to the next generation of wearable devices.

“These are actually good challenges for designers to edit and refine,” said Kubley. “In product design, you must always imagine the best- and worst-case scenarios of how a user will engage with a product.”

Increasingly, designers emphasize universal design—making devices accessible and easier to use for people of all abilities—and that benefits older adults. While not marketed specifically for older adults, the Apple Watch’s latest iterations (Series 4 and Series 5) feature screens that are 30 percent larger than earlier versions and a speaker function that’s 50 percent louder.

But no wearable technology will ever entirely replace the human touch.

“There’s a part of caregiving that will always be about the people, the caregivers,” Alagood said. “That will never be digitized.”

Getting Older, Sleeping Less?

Older adults are more prone to sleep issues—but there’s hope

Until age 45, Mary Jo Anderson says, she was a “champion sleeper.” 

“It’s like someone flipped a light switch,” she said. “When I entered menopause, I suddenly couldn’t fall asleep.” 

At age 64, she had less trouble falling asleep but couldn’t stay asleep. She woke up almost every hour of the night and felt tired much of the time during the day.

Anderson was not alone. More than half of all Americans over 65 report they have difficulty falling asleep or staying asleep, according to the National Institute on Aging.  

It’s a miserable feeling. While everyone else sleeps comfortably, you’re awake. Anxious or distressing thoughts occupy your mind. The longer you stay awake, the more you worry about not getting enough sleep. You fear you won’t be able to function the next day; you fret over how the lack of sleep may affect your health. A vicious cycle ensues: the more you can’t sleep, the more you worry about not sleeping, which keeps you awake. You start to dread bedtime and another night of trying desperately to sleep—and failing.

“It’s a cruel joke that life plays on us,” said W. Christopher Winter, MD, founder of the Martha Jefferson Hospital Sleep Medicine Center and author of The Sleep Solution: Why Your Sleep Is Broken and How to Fix It (2018). “When we’re youngworking nonstop, with kids running around the housewe wish we just had more time to sleep. Then we get older and have more time, and your brain’s saying, ‘I don’t really want it anymore.’”

Plus, the media are full of alarming reports that connect sleeplessness with health problems. Chronic insomnia is linked to increased risk of developing obesity, Type 2 diabetes, hypertension, heart attack, depression or anxiety. Research also links insomnia to Alzheimer’s and other forms of dementia (although it’s not clear whether the insomnia is a cause or an early symptom). Sleep-deprived people are more prone to falls or car accidents as well as forgetfulness. And, according to the National Sleep Foundation, a lack of sleep is linked to overeating—especially the overconsumption of junk food—which can lead to weight gain. 

On the flip side, people who do sleep well are more likely to be alert, function better mentally and are even more likely to maintain a healthy weight. 

But there is hope for those of us who call ourselves poor sleepers. With a “sleep makeover”changing habits that disrupt sleep, developing routines that promote sleepiness at bedtimemany older adults can get the sleep they need. 

The Roots of Sleeplessness

Researchers divide sleep disorders into two general categories: dyssomnias and parasomnias. Any sleep disorder that causes daytime drowsiness is a dyssomnia. That includes insomnia as well as other conditions, such as sleep apnea or restless leg syndrome. Parasomnias are sleep disorders with odd or irregular behaviors that occur during sleep, such as sleepwalking or night terrors.

People with insomniadifficulty falling asleep or staying asleepmay experience fatigue, low energy, difficulty concentrating, mood disturbances and decreased performance at work. Chronic insomnia isn’t an unavoidable aspect of normal aging, but sleep patterns do change as we age. It’s possible to understand these changes and not let them cause unnecessary distress that keeps you up nights. 

“Among healthy older adults, the brain circuit that controls sleep just isn’t as robust compared to that of their younger selves,” said Steven Lin, MD, neurologist with Healthcare Associates in Medicine, PC, in Staten Island, NY. “Plus, older people tend to have medical or other issues that may interfere with normal sleep.”

People over 65 are more likely to suffer from chronic conditions, such as arthritis, which can cause pain that can awaken them at night. They may be more prone to bladder issues that necessitate repeated nighttime trips to the bathroom. For elders caring for a spouse or a loved one, sleep may be disrupted when they get up at night to tend to the person. Older adults are also more likely to take medications that affect sleep or cause daytime sleepiness even after a good night’s sleep.

Experts say it’s normal for older people to take longer to doze off at night, to sleep more lightly and to wake several times during the night.

The timing of sleep may change too. Older adults tend to become sleepy earlier in the evening and wake up earlier in the morning. One National Sleep Foundation poll found that about two-thirds of adults over 65 consider themselves a “morning person,” considerably more than in the general population.

Experts also say it’s normal for people to sleep more lightly as they get older. Sleep occurs in cycles that are repeated several times during the night, including dreamless periods of light and deep sleep and periods of active dreaming (REM sleep). Beginning in middle age, people naturally spend less time in deep and REM sleep. They tend to wake up more often, an average of three to four times a night. Older people also are likely to take more time to fall asleep and have more difficulty staying asleep. 

Plus, an older person who’s sedentary—due to mobility issues, for example—may simply need less sleep. Ditto for someone who is retired, who need not arise at 6 a.m. every day or face the daily stresses of a job.

For older adults, a sleep makeover can start with simply recognizing these changes that come with age—and not getting too distressed about them. Try to minimize anxiety that might trigger more sleeplessness, Winter said

“Our sleep patterns change throughout life,” he said. “I’m 47. My sleep is not the same as it was when I was seven or 17. I have occasional nights where I’m lying in bed awake up until 4 a.m. I try to enjoy the quiet time, rather than getting stressed about it.” 

Resetting Sleep Rhythms

One important step in a sleep makeover is to work with your body’s circadian clock—the natural rhythms that make us alert during the day and sleepy at night, ​and that include the waxing and waning of the sleep-promoting hormone melatonin. With exposure to sunlight during the day, the body’s secretion of melatonin tends to drop off. As it gets darker at night, melatonin secretion increases.  

To reset your sleep rhythms, you should adopt a consistent sleep schedule with an emphasis on arising at the same time each day.

In addition, these steps may help:

  • Avoiding caffeine, alcohol, nicotine or other chemicals that interfere with sleep 
  • Creating a comfortable sleep environment (cool, dark and quiet) in the bedroom
  • Establishing a calming, pre-sleep routine
  • Making an evening to-do list so you don’t fret over what’s ahead the next day
  • Eliminating late-afternoon and early-evening naps
  • Eating and drinking enough, but not too much or too soon before bedtime 
  • Exercising regularly but not right before bedtime
  • Taking melatonin supplements under a physician’s supervision

An effective sleep makeover should also involve using light to your advantage. Get plenty of exposure to sunlight. Avoid electronic devices (e-readers, cell phones, tablets, TV or computer screens) that emit blue light, which can delay or disrupt sleep, in the hour before bedtime. 

Incorporating relaxation techniques, such as meditation or yoga, as part of your bedtime routine may help too, Lin said. Similarly, it’s a good idea to avoid anything too stimulating (a tense or engrossing novel, a violent film or the TV news if that upsets you) at bedtime. 

But how do we stop thinking about those news reports about the dangers of poor sleep? They can trigger anxiety. And anxiety is the enemy of good sleep. 

It’s easy to underestimate the number of hours you slept. Pay attention instead to how you feel the next day. 

“Unrealistic expectations about sleep that are not helpful can add to a patient’s stress, and that can lead to chronic insomnia,” Lin said. Because older people sleep more lightly and wake more often, or simply need less sleep, they may worry about a lack of sleep even when they’re actually getting enough. That leads to more stress, which leads to more trouble falling or staying asleep, triggering a vicious cycle. 

Experts advise against getting too hung up on how many hours you’re asleep on a given night. Sleep needs are individualized. There is no “gold standard” for how much sleep an older person needs; rather, it’s based on how people feel and how well they function on the amount of sleep they get. It’s more important to pay attention to how you feel during the day rather than how many hours you slept.

Adding to the anxiety, people can also easily misjudge the number of hours they are actually sleeping. Sleep medicine specialists call that paradoxical insomnia, according to David Luterman, MD, medical director of the Sleep Center at Baylor Scott & White in Dallas. For example, patients in the sleep lab—where sleep is monitored during an overnight stay—may report they didn’t sleep at all. 

“Yet the measurements taken of their brain waves showed they were asleep for at least four hours,” he said. “The patient’s perception is ‘I’m up all night’ but that’s not really the case.”

If you’re feeling anxious about how little sleep you’re getting, try wearing a fitness tracker (such as a FitBit) that monitors sleep. These wristband devices may not differentiate precisely between REM, deep and light sleep, but Winter said they do tally the total number of hours you’re asleep with reasonable accuracy.

“If a patient tells me he’s sleeping only an hour or two a night, and the device is saying he’s sleeping six hours and 13 minutes on average, I believe the device,” he said.  

Don’t Lose Sleep Over a Little Lost Sleep

We all experience sleeplessness at times. You may feel tired and worried about it, but it may not actually be worrisome. 

Winter cautions against equating insomnia with sleep deprivation, especially occasional insomnia. Those studies that warn against the dangers of too little sleep, he said, relate more to people who never get enough rest: the single mom working two jobs who can manage only four hours of sleep a night; the hard-charging executive who gets up at 4 a.m. to work out; the person with chronic sleep apnea who awakes four to five times an hour at night. 

It’s normal for people to experience insomnia for short periods after a stressful event, such as a divorce or the death of a loved one, Luterman said. During very stressful periods, he recommends considering the option of sleep medication, which may help avoid short-term, stress-related insomnia that turns into chronic insomnia. However, because older people respond differently to medicines than younger adults, sleep medication should not be taken except under a physician’s supervision. 

“It’s a careful balance,” Luterman said. “You don’t want to rush to prescribe patients a sleeping pill when the root cause of insomnia may be something else.” 

He added that the American College of Physicians recommends that, for patients of any age with chronic insomnia, the first line of treatment should be cognitive behavioral therapy (CBT) rather than medication. CBT is solution-oriented psychotherapy that treats specific problems by modifying dysfunctional thoughts and behaviors. Behavior modification might include simple steps like going to bed an hour or two later if you’re not feeling sleepy or devising a helpful routine for times when you can’t sleep. (When that happens, experts advise against staying in bed and tossing and turning; instead, get up and do something quiet, like knitting or reading boring materials, until you start feeling sleepy.)

In general, sleep medication is recommended only for the short term—several weeks at most. After a longer period, patients can build up a tolerance to sleeping pills (needing increasingly higher doses for the same results) or become psychologically dependent so that the idea of going to sleep without a pill causes anxiety. Follow your doctor’s instructions and stop taking the drug as recommended.

“When you compare the two—sleep medications vs CBT—research shows the results are the same, or CBT is a little better,” Luterman said. 

When to See a Doctor

Anyone experiencing trouble sleeping that lasts more than a few months should consult a physician, to eliminate underlying emotional or medical conditions that may disrupt sleep, such as depression or restless legs syndrome, a condition that causes a twitching or tingling sensation and an uncontrollable urge to move the legs at night.  

If insomnia persists, your doctor may prescribe a visit to a sleep clinic. That involves spending the night sleeping in a private room, with equipment that can help detect sleep problems by monitoring brain activity, eye movement, heart rate, snoring, body movements and more. 

Before you go to the clinic, the doctor may ask you to keep a sleep diary for a few weeks, noting how much sleep you got, when you went to bed and how many times you woke up during the night. That information will be compared to the results in the lab. 

Don’t Get Discouraged

While there are indeed many ways you may be able to improve your sleep, there is no one-size-fits-all answer. You’re going to have to experiment to see what works best for you. The solution may involve doctors and sleep clinics, or maybe simple changes in your routine will work wonders. 

Vickie Parker, 67, was waking up every morning at 4:20 a.m. and couldn’t easily fall back asleep, even though she was still tired. So she developed a routine that seems to work: a trip to the bathroom, a heating pad to relieve pain in her shoulder, and turning down the thermostat in her bedroom by a degree or two. If that doesn’t work, she takes a low-dose sedative prescribed by her doctor. 

And Mary Jo Anderson eventually found an unconventional solution that helps her fall and stay asleep: a podcast called Sleep with Me, which the New Yorker described as “the podcast that tells ingeniously boring bedtime stories to help you fall asleep.”

“The host talks in this lull-y, drone-y voice,” Anderson said. “He’ll tell a story or recap a popular TV show. On one, he narrates while he’s putting together an Ikea bed. It helps shut down your mind but it’s not interesting enough that you stay awake to hear the end. It’s been the best thing for me.”

Starving Seniors: How America Fails to Feed Its Aging

Millions of older people are going hungry as safety nets fray

Two distinguished health journalists tackle a new and heartbreaking topic: hunger among the nation’s elders. More and more older people aren’t sure where their next meal will come from. This story was posted on the Kaiser Health News website on September 3, 2019, and also ran on the Time website. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.

Army veteran Eugene Milligan is 75 years old and blind. He uses a wheelchair since losing half his right leg to diabetes and gets dialysis for kidney failure.

And he has struggled to get enough to eat.

Earlier this year, he ended up in the hospital after burning himself while boiling water for oatmeal. The long stay caused the Memphis vet to fall off a charity’s rolls for home-delivered Meals on Wheels, so he had to rely on others, such as his son, a generous off-duty nurse and a local church to bring him food.

“Many times, I’ve felt like I was starving,” he said. “There’s neighbors that need food too. There’s people at dialysis that need food. There’s hunger everywhere.”

Indeed, millions of seniors across the country quietly go hungry as the safety net designed to catch them frays. Nearly 8 percent of Americans 60 and older were “food insecure” in 2017, according to a recent study released by the anti-hunger group Feeding America. That’s 5.5 million seniors who don’t have consistent access to enough food for a healthy life, a number that has more than doubled since 2001 and is only expected to grow as America grays.

While the plight of hungry children elicits support and can be tackled in schools, the plight of hungry older Americans is shrouded by isolation and a generation’s pride. The problem is most acute in parts of the South and Southwest. Louisiana has the highest rate among states, with 12 percent of seniors facing food insecurity. Memphis fares worst among major metropolitan areas, with 17 percent of seniors like Milligan unsure of their next meal.

And government relief falls short. One of the main federal programs helping seniors is starved for money. The Older Americans Act—passed more than half a century ago as part of President Lyndon Johnson’s Great Society reforms—was amended in 1972 to provide for home-delivered and group meals, along with other services, for anyone 60 and older. But its funding has lagged far behind senior population growth, as well as economic inflation.

The biggest chunk of the act’s budget, nutrition services, dropped by 8 percent over the past 18 years when adjusted for inflation, an AARP report found in February. Home-delivered and group meals have decreased by nearly 21 million since 2005. Only a fraction of those facing food insecurity get any meal services under the act; a US Government Accountability Office report examining 2013 data found 83 percent got none.

With the act set to expire Sept. 30, Congress is now considering its reauthorization and how much to spend going forward.

When food-deprived older people wind up in hospital, that drives up costs paid ultimately by the taxpayers.

Meanwhile, according to the US Department of Agriculture, only 45 percent of eligible adults 60 and older have signed up for another source of federal aid: SNAP, the food stamp program for America’s poorest. Those who don’t are typically either unaware they could qualify, believe their benefits would be tiny or can no longer get to a grocery store to use them.

Even fewer seniors may have SNAP in the future. More than 13 percent of SNAP households with elderly members would lose benefits under a recent Trump administration proposal.

For now, millions of seniors—especially low-income ones—go without. Across the nation, waits are common to receive home-delivered meals from a crucial provider, Meals on Wheels, a network of 5,000 community-based programs. In Memphis, for example, the wait to get on the Meals on Wheels schedule is more than a year long.

“It’s really sad because a meal is not an expensive thing,” said Sally Jones Heinz, president and CEO of the Metropolitan Inter-Faith Association, which provides home-delivered meals in Memphis. “This shouldn’t be the way things are in 2019.”

Since malnutrition exacerbates diseases and prevents healing, seniors without steady, nutritious food can wind up in hospitals, which drives up Medicare and Medicaid costs, hitting taxpayers with an even bigger bill. Sometimes seniors relapse quickly after discharge—or worse.

Widower Robert Mukes, 71, starved to death on a cold December day in 2016, alone in his Cincinnati apartment.

The Hamilton County Coroner listed the primary cause of death as “starvation of unknown etiology” and noted “possible hypothermia,” pointing out that his apartment had no electricity or running water. Death records show the 5-foot-7-inch man weighed just 100.5 pounds.

A Clear Need

On a hot May morning in Memphis, seniors trickled into a food bank at the Riverside Missionary Baptist Church, three miles from the opulent tourist mecca of Graceland. They picked up boxes packed with canned goods, rice, vegetables and meat.

Marion Thomas, 63, placed her box in the trunk of a friend’s car. She lives with chronic back pain and high blood pressure and started coming to the pantry three years ago. She’s disabled, relies on Social Security and gets $42 a month from SNAP based on her income, household size and other factors. That’s much less than the average $125-a-month benefit for households with seniors, but more than the $16 minimum that one in five such households gets. Still, Thomas said, “I can’t buy very much.”

A day later, the Mid-South Food Bank brought a “mobile pantry” to Latham Terrace, a senior housing complex, where a long line of people waited. Some inched forward in wheelchairs; others leaned on canes. One by one, they collected their allotments.

The need is just as real elsewhere. In Dallas, TX, 69-year-old China Anderson squirrels away milk, cookies and other parts of her home-delivered lunches for dinner because she can no longer stand and cook due to scoliosis and eight deteriorating vertebral discs.

As seniors ration food, programs ration services.

Although more than a third of the Meals on Wheels money comes from the Older Americans Act, even with additional public and private dollars, funds are still so limited that some programs have no choice but to triage people, using score sheets that assign points based on who needs food the most. Seniors coming from the hospital and those without family usually top waiting lists.

Food delivery services don’t just bring food; they provide human connections for isolated elders.

More than 1,000 were waiting on the Memphis area’s list recently. And in Dallas, $4.1 million in donations wiped out a 1,000-person waiting list in December, but within months it had crept back up to 100.

Nationally, “there are tens of thousands of seniors who are waiting,” said Erika Kelly, chief membership and advocacy officer for Meals on Wheels America. “While they’re waiting, their health deteriorates and, in some cases, we know seniors have died.”

Edwin Walker, a deputy assistant secretary for the federal Administration on Aging, acknowledged waits are a long-standing problem but said 2.4 million people a year benefit from the Older Americans Act’s group or home-delivered meals, allowing them to stay independent and healthy.

Seniors get human connection, as well as food, from these services. Aner Lee Murphy, a 102-year-old Meals on Wheels client in Memphis, counts on the visits with volunteers Libby and Bob Anderson almost as much as the food. She calls them “my children,” hugging them close and offering a prayer each time they leave.

But others miss out on such physical and psychological nourishment. A devastating phone call brought that home for Kim Daugherty, executive director of the Aging Commission of the Mid-South, which connects seniors to service providers in the region. The woman on the line told Daugherty she’d been on the waiting list for more than a year.

“Ma’am, there are several hundred people ahead of you,” Daugherty reluctantly explained.

“I just need you all to remember,” came the caller’s haunting reply, “I’m hungry and I need food.”

A Slow Killer

James Ziliak, a poverty researcher at the University of Kentucky who worked on the Feeding America study, said food insecurity shot up with the Great Recession, starting in the late 2000s, and peaked in 2014. He said it shows no signs of dropping to pre-recession levels.

While older adults of all income levels can face difficulty accessing and preparing healthy food, rates are highest among seniors in poverty. They are also high among minorities. More than 17 percent of black seniors and 16 percent of Hispanic seniors are food insecure, compared with fewer than 7 percent of white seniors.

A host of issues combine to set those seniors on a downward spiral, said registered dietitian Lauri Wright, who chairs the Department of Nutrition and Dietetics at the University of North Florida. Going to the grocery store gets a lot harder if they can’t drive. Expensive medications leave less money for food. Chronic physical and mental health problems sap stamina and make it tough to cook. Inch by inch, hungry seniors decline.

And, even if it rarely kills directly, hunger can complicate illness and kill slowly.

Malnutrition blunts immunity, which already tends to weaken as people age. Once they start losing weight, they’re more likely to grow frail and are more likely to die within a year, said John Morley, MD, director of the division of geriatric medicine at Saint Louis University.

Seniors just out of the hospital are particularly vulnerable. Many wind up getting readmitted, pushing up taxpayers’ costs for Medicare and Medicaid. A recent analysis by the Bipartisan Policy Center found that Medicare could save $1.57 for every dollar spent on home-delivered meals for chronically ill seniors after a hospitalization.

There were more than 1,000 people ahead of Milligan on the food-delivery waiting list as his health deteriorated.

Most hospitals don’t refer senior outpatients to Meals on Wheels, and advocates say too few insurance companies get involved in making sure seniors have enough to eat to keep them healthy.

When Milligan, the Memphis veteran, burned himself with boiling water last winter and had to be hospitalized for 65 days, he fell off the Metropolitan Inter-Faith Association’s radar. The meals he’d been getting for about a decade stopped.

Heinz, Metropolitan’s CEO, said the association is usually able to start and stop meals for short hospital stays. But, Heinz said, the association didn’t hear from Milligan and kept trying to deliver meals for a time while he was in the hospital, then notified the Aging Commission of the Mid-South he wasn’t home. As is standard procedure, Metropolitan officials said, a staff member from the commission made three attempts to contact him and left a card at the blind man’s home.

But nothing happened when he got out of the hospital this spring. In mid-May, a nurse referred him for meal delivery. Still, he didn’t get meals because he faced a wait list already more than 1,000 names long.

After questions from Kaiser Health News, Heinz looked into Milligan’s case and realized that, as a former client, Milligan could get back on the delivery schedule faster.

But even then the process still has hurdles: the aging commission would need to conduct a new home assessment for meals to resume. That has yet to happen because, amid the wait, Milligan’s health deteriorated.

A Murky Future

As the Older Americans Act awaits reauthorization this fall, many senior advocates worry about its funding.

In June, the US House passed a $93 million increase to the Older Americans Act‘s nutrition programs, raising total funding by about 10 percent to $1 billion in the next fiscal year. In inflation-adjusted dollars, that’s still less than in 2009. And it still has to pass in the Republican-controlled Senate, where the proposed increase faces long odds.

US Rep. Suzanne Bonamici, an Oregon Democrat who chairs the Civil Rights and Human Services Subcommittee, expects the panel to tackle legislation for reauthorization of the act soon after members return from the August recess. She’s now working with colleagues “to craft a strong, bipartisan update,” she said, that increases investments in nutrition programs as well as other services.

“I’m confident the House will soon pass a robust bill,” she said, “and I am hopeful that the Senate will also move quickly so we can better meet the needs of our seniors.”

In the meantime, “the need for home-delivered meals keeps increasing every year,” said Lorena Fernandez, who runs a meal delivery program in Yakima, WA. Activists are pressing state and local governments to ensure seniors don’t starve, with mixed results. In Louisiana, for example, anti-hunger advocates stood on the state Capitol steps in May and unsuccessfully called on the state to invest $1 million to buy food from Louisiana farmers to distribute to hungry residents. Elsewhere, senior activists across the nation have participated each March in “March for Meals” events such as walks, fundraisers and rallies designed to focus attention on the problem.

Private fundraising hasn’t been easy everywhere, especially [in] rural communities without much wealth. Philanthropy has instead tended to flow to hungry kids, who outnumber hungry seniors more than two-to-one, according to Feeding America.

“Ten years ago, organizations had a goal of ending child hunger and a lot of innovation and resources went into what could be done,” said Jeremy Everett, executive director of Baylor University’s Texas Hunger Initiative. “The same thing has not happened in the senior adult population.” And that has left people struggling for enough food to eat.

As for Milligan, he didn’t get back on Meals on Wheels before suffering complications related to his dialysis in June. He ended up back in the hospital. Ironically, it was there that he finally had a steady, if temporary, source of food.

It’s impossible to know if his time without steady, nutritious food made a difference. What is almost certain is that feeding him at home would have been far cheaper.

Are Pets Really Good for Older People?

An older couple put aside some of the food delivered by Meals on Wheels in order to have enough to feed their dog.

A widow delays an important visit to the doctor, fearing no one will care for her cat if she is hospitalized.

An older man living alone with a sick pet agonizes over a terrible choice: incur vet bills he can’t possibly afford or have his only companion euthanized.

Heartbreaking stories like these point to a difficult reality. While pets can benefit older adults’ health and happiness, they can also lead to financial burdens, near-impossible decisions or devastating grief.

Do the benefits of pet ownership really outweigh the risks?

Weighing Benefits with Costs

For many older adults, animal companions can make a huge difference in quality of life.

“People with pets in general are happier and healthier,” says Nicki Nance, a licensed psychotherapist and associate professor of human services and psychology at Beacon College in Leesburg, FL. “Pets require a structured schedule and daily exercise. They provide a sense of purpose, constant companionship, physical contact and humor.”

Those benefits can boost mental and physical health. An American Heart Association research review concludes that “pet ownership, particularly dog ownership, may be reasonable for reduction in cardiovascular disease risk,” with the most significant benefits associated with owners who walked their dogs regularly. The Human Animal Bond Research Institute (HABRI), a nonprofit, research and education organization, cites research that points to the benefits of therapy animals: they can calm older people with dementia and alleviate anxiety and distress for those undergoing cancer treatment.

Doctors often encourage their older patients to adopt a pet. But psychologist Hal Herzog, author of Some We Love, Some We Hate, Some We Eat: Why It’s So Hard to Think Straight About Animals (2010), questions whether the data is strong enough to warrant a doctor’s recommendation. While some studies point to health benefits, others show little or none. He also notes that studies show correlation but don’t prove causality: it’s not clear whether pet ownership makes people healthier, or healthy people are more likely to have the energy, motivation and financial resources to take care of pets. Most analyses, he adds, don’t factor in the lifetime cost of owning a pet in the United States, which can run upward of $10,000.  

The hardest part of my job is having to tell an older adult that a beloved pet needs to be euthanized.

—James Moebius, veterinarian

The downside of pet ownership should not be underestimated. Pets pose a significant risk of falls. A cat underfoot, a dog that pulls too hard on a leash, or pet toys on the floor can cause a person to stumble and fall. A 2009 Centers for Disease Control analysis estimated that more than 86,000 injuries due to falls each year were related to cats and dogs, with the highest rates of injury occurring among people 75 and up. For older adults, a fall can have devastating health consequences; a hip fracture, for example, can lead to long-term impairment, nursing home admission or death. 

Dogs need to be walked, all animals need to be fed and most must be groomed at least occasionally or have cages that should be cleaned regularly. These tasks are time consuming and can be hard for someone with limited mobility. Pets need trips to the veterinarian for routine wellness visits and illness. That can be traumatic, as well as costly, and difficult for a person who doesn’t drive. 

Then there’s the trauma of losing a pet. 

“The hardest part of my job is having to tell an older adult that a beloved pet needs to be euthanized,” says James Moebius, a veterinarian in Sachse, TX. “It’s even harder when it’s an older gentlemen who lives alone and who’s part of that generation that doesn’t express feelings. You watch him walk out alone, silently, without his little dog, and it just pulls your heart out.” 

Making It Work

Barb Cathey, CEO and founder of Pets for Seniors, an adoption program in Illinois, admits there are ups and downs and often, unexpected outcomes. She helped a client named Betty to adopt a rescued dog named Zoe, and the match was a happy one. However, Betty’s family returned Zoe to the shelter a year later. A fall had forced Betty to move to rehab for several months, and no one could care for the dog. The shelter agreed to keep the dog until her owner recovered. 

Meanwhile, Betty wasn’t doing well, refusing to even try to cooperate with her rehab therapist. Then her daughter brought Zoe for a visit. Delighted to see the dog, Betty immediately moved in her bed to make room. The therapist encouraged the family to bring Zoe back regularly to keep Betty motivated. 

“Betty ended up getting better, with Zoe’s help, and eventually was able to take her back home,” Cathey says. 

Before adopting a pet, a person should carefully consider all potential challenges as well as ways to minimize problems. A key first step: choosing a pet that’s a realistic match for an older adult’s physical capabilities and energy level.

“The worst mistake a senior can make is getting an energetic puppy or young dog,” Cathey says. Ditto for a dog or cat that requires lots of expensive grooming (such as a breed with long hair) or a young pet that’s almost certain to outlive the owner by many years. 

Shelters have a hard time finding homes for older animals, but they’re often a good match for older adults.

Cathey worked with an older woman whose family gave her a Jack Russell puppy, a breed known for its high energy level.

“She would call me in misery because the puppy was too much for her and she did not want to hurt their feelings,” she says. “I convinced the family to let me find a new home for the Jack Russell pup and found an eight-year-old Pomeranian that was housebroken and just wanted to lay in her lap all day—just what she wanted.”

Shelters have a hard time finding homes for older animals, but senior pets often make a good match for older adults, according to Linda Ross, a retired counselor who worked with aging populations. Ross and her husband are in their 70s and are both healthy and active, yet they chose to adopt an older dog after theirs passed away in 2010. 

“Older pets tend to be housebroken, quieter and less energetic,” she says. “And if they’re rescued dogs who’ve been homeless or in a shelter, they are just so grateful to have a soft bed and a good routine. We just love on them and they love on us.”

Finding Solutions

Those heartbreaking stories—the older couple who put food aside for a pet or the widow who postponed medical attention—were the impetus for the founding of the Seniors’ Pet Assistance Network (SPAN) in the Dallas area. Caseworkers for local aging-related agencies had noticed the challenges of elders living alone with pets, and how a little help might go a long way. 

Now, SPAN serves low-income older adults in the Dallas area with regular deliveries of pet food as well as help with veterinary-care costs. Grant money pays for food for about 75 animals; volunteers deliver it once every other month and spend a little time checking on each client. SPAN’s clients also receive an allotment of up to $300 per year to cover routine vet care, including immunizations, heartworm medication, and flea and tick prevention. 

“That’s significant, given that many live on as little as $1,200 per month in Social Security benefits,” says Laurie Jennings, SPAN’s co-founder.

For others, potential problems in pet ownership can be addressed with a little advance planning. Some veterinary costs, such as immunizations and spaying or neutering, can be minimized by taking advantage of low-cost clinics offered at animal shelters and pet-supply stores. For those who can afford it, pet insurance offers a way to help owners avoid wrenching decisions about vet bills. Owners pay a monthly premium but may be covered (depending on the type of plan) if pricey treatments are needed. 

To prevent falls, the CDC recommends that pet owners consider obedience training, installing night lights on walkways, moving the animal to another room or a crate at night, or even choosing a light-colored pet rather than one with dark fur. 

And in the event that an older pet owner loses a beloved animal, veterinarians can often help with the grieving process by pointing them to a pet-loss support group. 

Making Arrangements for Future Care  

Jennings often hears from family members who tell her, “That animal is keeping my parent alive.” But on the flip side, it’s a source of worry.

“We have a client, a 97-year-old widow, who has a very ornery, 9-year-old poodle,” she says. “She lives for that dog and frets over who will care for the dog if something happens to her.”

Some older adults want to provide for their pets in their wills, according to Lori Leu, an elder law attorney in Plano, TX. She recommends checking with a friend or family member first to see if they’re willing to take the pet after the owner dies or becomes incapacitated. That arrangement should be put into a will, along with (if possible) a small bequest to help cover the pet’s expenses. 

Although they are careful to avoid making promises, the people at SPAN try to help clients “rehome” pets if they can no longer care for them. It’s not always possible, but they do have success stories.

Jennings recalls Bobo, the beloved pet of an elderly woman who lived alone and was dying of cancer. Family members wouldn’t take Bobo, a pit bull mix, and because he was a little aggressive, Jennings despaired of ever finding a home for him. But a rescue group took Bobo, helped socialize him and found him a home.

When the young man who adopted Bobo learned of his previous owner, he offered to bring the pet to visit her one last time, just a few weeks before she passed away. 

“So, we have this photo of Bobo, this massive pit bull, lying on top of her in her bed,” Jennings says. Now SPAN receives a holiday card each year from the young man, with a photo of Bobo sporting a Santa hat.

“You make wonderful human connections doing this work,” says Jennings. “It’s beautiful.”

Is There Such a Thing as Normal Aging?

Tracking some of the usual changes in body and mind, decade by decade

Journalist Bruce Horovitz asked four experts in geriatrics to explain what normal aging is apt to be like for people who have taken care of their health. The experts discuss the physiological changes that typically occur, from our 50s through our 90s. Kaiser Health News (KHN) posted Horovitz’s article on April 11, 2018. It also ran in USA Today

For 93-year-old Joseph Brown, the clearest sign of aging was his inability the other day to remember he had to have his pants unzipped to pull them on.

For 95-year-old Caroline Mayer, it was deciding at age 80 to put away her skis, after two hip replacements.

And for 56-year-old Thomas Gill, MD, a geriatrics professor at Yale University, it’s accepting that his daily five-and-a-half-mile jog now takes him upward of 50 minutes—never mind that he long prided himself on running the distance in well under that time.

Is there such a thing as normal aging?

The physiological changes that occur with aging are not abrupt, said Gill.

The changes happen across a continuum as the reserve capacity in almost every organ system declines, he said. “Think of it, crudely, as a fuel tank in a car,” said Gill. “As you age, that reserve of fuel is diminished.”

Drawing on their decades of practice, along with the latest medical data, Gill and two geriatric experts agreed to help identify examples of what are often—but not always—considered to be signposts of normal aging for folks who practice good health habits and get recommended preventive care.

The 50s: Stamina Declines

Gill recognizes that he hit his peak as a runner in his 30s and that his muscle mass peaked somewhere in his 20s. Since then, he said, his cardiovascular function and endurance have slowly decreased. He’s the first to admit that his loss of stamina has accelerated in his 50s. He is reminded, for example, each time he runs up a flight of stairs.

In your 50s, it starts to take a bit longer to bounce back from injuries or illnesses, said Stephen Kritchevsky, PhD, 57, an epidemiologist and co-director of the J. Paul Sticht Center for Healthy Aging and Alzheimer’s Prevention at Wake Forest University. While our muscles have strong, regenerative capacity, many of our organs and tissues can only decline, he said.

Times change. Many people today function as well in their mid-70s as those in their mid-60s did a generation ago.

David Reuben, MD, 65, experienced altitude sickness and jet lag for the first time in his 50s. To reduce those effects, Reuben, director of the Multicampus Program in Geriatrics Medicine and Gerontology and chief of the geriatrics division at UCLA, learned to stick to a regimen—even when he travels cross-country: he tries to go to bed and wake up at the same time, no matter what time zone he’s in.

There often can be a slight, cognitive slowdown in your 50s too, said Kritchevsky. As a specialist in a profession that demands mental acuity, he said, “I feel I can’t spin quite as many plates at the same time as I used to.” That, he said, is because cognitive-processing speeds typically slow with age.

The 60s: Susceptibility Increases

There’s a good reason why even healthy folks age 65 and up are strongly encouraged to get vaccines for flu, pneumonia and shingles: humans’ susceptibility and negative response to these diseases increase with age. Those vaccines are critical as we get older, Gill said, since these illnesses can be fatal—even for healthy seniors.

Hearing loss is common, said Kritchevsky, especially for men.

Reaching age 60 can be emotionally trying for some, as it was for Reuben, who recalls 60 “was a very tough birthday for me. Reflection and self-doubt is pretty common in your 60s,” he said. “You realize that you are too old to be hired for certain jobs.”

The odds of suffering some form of dementia double every five years beginning at age 65, said Gill, citing an American Journal of Public Health report. While it’s hardly dementia, he said, people in their 60s might begin to recognize a slowing of information retrieval. “This doesn’t mean you have an underlying disease,” he said. “Retrieving information slows down with age.”

The 70s: Chronic Conditions Fester

Many folks in their mid-70s function as folks did in their mid-60s just a generation ago, said Gill. But this is the age when chronic conditions—like hypertension or diabetes or even dementia—often take hold. “A small percentage of people will enter their 70s without a chronic condition or without having some experiences with serious illness,” he said.

People in their 70s are losing bone and muscle mass, which makes them more susceptible to sustaining a serious injury or fracture in the event of a fall, Gill added.

Seventies is the pivotal decade for physical functioning, said Kritchevsky. Toward the end of their 70s, many people start to lose height, strength and weight. Some people report problems with mobility, he said, as they develop issues in their hips, knees or feet.

Most older people—including those in their 90s and beyond—are more satisfied with their lives than younger people are. 

At the same time, roughly half of men age 75 and older experience some sort of hearing impairment, compared with about 40 percent of women, said Kritchevsky, referring to a 2016 report from the Centers for Disease Control and Prevention. 

Another conundrum common to the 70s: people tend to take an increasing number of medications used for “preventive” reasons. But these medications are likely to have side effects on their own or in combination, not all of which are predictable, said Gill. “Our kidneys and liver may not tolerate the meds as well as we did earlier in life,” he said.

Perhaps the biggest emotional impact of reaching age 70 is figuring out what to do with your time. Most people have retired by age 70, said Reuben, “and the biggest challenge is to make your life as meaningful as it was when you were working.”

The 80s: Fear of Falling Grows

Fear of falling—and the emotional and physical blowback from a fall—are part of turning 80.

If you are in your 80s and living at home, the chance that you might fall in a given year grows more likely, said Kritchevsky. About 40 percent of folks 65 and up who are living at home will fall at least once each year, and about 1 in 40 of them will be hospitalized, he said, citing a study from the UCLA School of Medicine and Geriatric Research Education and Clinical Center. The study notes that the risk increases with age, making people in their 80s even more vulnerable.

By age 80, folks are more likely to spend time in the hospital—often due to elective procedures such as hip or knee replacements, said Gill, basing this on his own observations as a geriatric specialist. Because of diminished reserve capacities, it’s also tougher to recover from surgery or illnesses in your 80s, he said.

The 90s & Up: Relying on Others

By age 90, people have roughly a one-in-three chance of exhibiting signs of dementia caused by Alzheimer’s disease, said Gill, citing a Rush Institute for Healthy Aging study. The best strategy to fight dementia isn’t mental activity but at least 150 minutes per week of “moderate” physical activity, he said. It can be as simple as brisk walking.

At the same time, most older people—even into their 90s and beyond—seem to be more satisfied with their lives than are younger people, said Kritchevsky.

At 93, Joseph Brown understands this—despite the many challenges he faces daily. “I just feel I’m blessed to be living longer than the average Joe,” he said.

Brown lives with his 81-year-old companion, Marva Grate, in the same, single-family home that Brown has owned for 50 years in Hamden, CT. The toughest thing about being in his 90s, he said, is the time and thought often required to do even the simplest things. “It’s frustrating at times to find that you can’t do the things you used to do very easily,” he said. “Then, you start to question your mind and wonder if it’s operating the way it should.”

Brown, a former maintenance worker who turned 85 in May, said he gets tired—and out of breath—very quickly from physical activity.

He spends ample time working on puzzle books, reading and sitting on the deck, enjoying the trees and flowers. Brown said no one can really tell anyone else what “normal” aging is.

Nor does he claim to know himself. “We all age differently,” he said.

Brown said he doesn’t worry about it, though. “Before the Man Upstairs decides to call me, I plan to disconnect the phone.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation, Gordon and Betty Moor Foundation and the Scan Foundation. 

Medical Students Learn How to Talk to Patients about Dying

They’re taught how to deliver bad news with compassion—or admit a mistake

Doctors are usually taught very little about how to deliver bad news to patients and their families, so they often do it badly. JoNel Aleccia describes how one medical school is changing that. She wrote her article for Kaiser Health News (KHN), where she’s a senior correspondent, focusing on aging and end-of-life issues. KHN posted her article on March 13, 2018. It also ran in U.S. News & World Report.

The distraught wife paced the exam room, anxious for someone to come and tell her about her husband. She’d brought him to the emergency department that afternoon when he complained about chest discomfort.

Sophia Hayes, 27, a fourth-year medical student at the Oregon Health & Science University (OHSU), entered with a quiet knock, took a seat and asked the wife to sit too.

Softly and slowly, Hayes explained the unthinkable: the woman’s husband had had a heart attack. His heart stopped. The intensive care team spent 45 minutes trying to save him.

Then Hayes delivered the news dreaded by doctors and family members alike.

“I’m so, so sorry,” she said. “But he died.”

The drama, played out on a recent Friday afternoon, was a scene staffed by actors and recorded by cameras, part of a nerve-wracking exam for Hayes and 143 other would-be doctors. OHSU officials say they’re the first medical students in the United States required to pass a tough, new test in compassionate communication.

By graduation this spring, Hayes and her colleagues must be able to show that, in addition to clinical skills, they know how to admit a medical mistake, deliver a death notice and communicate effectively about other emotionally and ethically fraught issues.

It’s a push started in the last two years by Susan Tolle, MD, director of the OHSU Center for Ethics in Health Care, who wants to improve the way doctors talk to patients, especially in times of crisis.

How Doctors Go Wrong

Tolle has seen doctors who don’t make eye contact, those who spout medical jargon and still others who appear to lack basic compassion for patients and their families.

“They’ll stand in the doorway and say something like, ‘You need to call a funeral home,’” Tolle said.

Part of the problem is that, in the past, aspiring doctors were taught too little, too late about difficult communication and its nuances, said Tolle.

“My generation of faculty were not taught,” she said. “I had history-taking, but it was more about, ‘How long have you had chest pain?’ I did not have [instruction in] how to give bad news.”

Bad news, badly delivered, can have far-reaching effects on family.

At Tolle’s urging, the OHSU officials revamped the medical school curriculum to include new lessons in—and standards for—communication, ethics and professionalism woven through the course work, said Dr. George Mejicano, the senior associate dean for education.

“Most of the emphasis has been on the simplest aspects of communication,” he said. “The whole idea here is, how do you tell someone they have a life-threatening or even a fatal illness? How do you tell someone, ‘I’ve actually made a mistake?’”

OHSU isn’t the only center to focus on communication. All medical schools and residency programs in the United States are required to include specific instruction in communication skills to gain accreditation, according to Lisa Howley, senior director of strategic initiatives and partnerships for the Association of American Medical Colleges, or AAMC. Residents are required to prove competency in order to graduate from training and be eligible for board certification for individual practice. And there’s been a larger effort nationwide to help practicing doctors learn to talk to patients about dying.

But Mark Siegler, MD, director of the MacLean Center for Clinical Medical Ethics at the University of Chicago, who closely follows communication issues, said he believes OHSU’s approach is new.

“So far as I know, there is no other school in the United States that has any such standard,” said Siegler. “No other program has both a teaching effort and an evaluation effort.”

What Happens When Students Fail

Hayes, the OHSU medical student, said she and her fellow students were nervous before the recent exam. But the practice with “standardized patients”—actors trained to portray people undergoing medical care—was crucial to understanding the right way to talk to families in a real-world situation.

“You realize you have this horrible information they don’t have yet,” she said.

Hayes did quite well and passed the test, Tolle said. So did most of the other OHSU medical students. But several—she wouldn’t say exactly how many—will need remedial coaching and testing before graduation.

Some of those students failed to introduce themselves properly or to find out what the family member had already been told, Tolle said. Instead, they bluntly announced they had bad news and quickly added that the patient was dead.

“You watched the screen and it looked like you hit [the spouse] with a truck,” Tolle said. “It comes across as incredibly uncaring.”

Med school faculty will also be offered a chance to learn how to communicate compassionately.

In real life, such botched conversations can have far-reaching effects. Mary George-Whittle was just 24 when her father had emergency, open-heart surgery in 1979. When the surgeon emerged from the operating room to face the family, his message was jarring.

“He blurted out that Dad had died, that he had too little to work with, that Dad’s veins were like working with the veins of a turkey,” recalled George-Whittle, now 63 and retired after a career as a chaplain in Oregon. “He told us he had Dad’s blood all over him.”

Nearly 40 years later, she and her 11 siblings can still remember the shock.

“The impact that that still has is like PTSD,” she said. “The experience gets caught up in how poorly the news was given.”

Changing the Medical Culture

This year’s test is a first step, Tolle said. It will be reviewed and refined for future classes. Students who need help will get it. At the same time, OHSU faculty will be offered sessions to help improve their communication skills so they can model what students are taught.

The long-term goal is to raise the bar across the profession, said Tolle, who’s had some practice shifting paradigms. She’s the co-creator of the Physician Orders for Life-Sustaining Treatment, known as POLST, a document credited with revolutionizing end-of-life instructions across the United States.

In the same way, Tolle said, the culture of communication among doctors can change too, starting with the latest generation.

“Our biggest goal is not to do a kind of ‘gotcha’ thing for the current medical students,” she said. “It’s to find where the pieces are missing.”

KHN’s coverage of these topics is supported by Gordon and Betty Moore Foundation and John A. Hartford Foundation.

Family Caregivers Are Older Than Ever

People in their 60s and 70s are caring for parents who are 80 and up

Perhaps it was inevitable: with so many people living longer, more and more empty nesters are taking on the care of parents who are frail and ill. Journalist Judith Graham explores what that means for the younger generation in terms of their health, finances and plans for retirement. She wrote her article for Kaiser Health News, and it was posted on KHN’s website on August 23, 2018.

“This won’t go on for very long,” Sharon Hall said to herself when she invited her elderly mother, who’d suffered several small strokes, to live with her.

That was five years ago, just before Hall turned 65 and found herself crossing into older age.

In the intervening years, Hall’s husband was diagnosed with frontotemporal dementia and forced to retire. Neither he nor Hall’s mother, whose memory had deteriorated, could be left alone in the house. Hall had her hands full taking care of both of them, seven days a week.

As life spans lengthen, adult children like Hall in their 60s and 70s are increasingly caring for frail, older parents—something few people plan for.

“When we think of an adult child caring for a parent, what comes to mind is a woman in her late 40s or early 50s,” said Lynn Friss Feinberg, senior strategic policy adviser for AARP’s Public Policy Institute. “But it’s now common for people 20 years older than that to be caring for a parent in their 90s or older.”

A new analysis from the Center for Retirement Research at Boston College is the first to document how often this happens. It found that 10 percent of adults ages 60 to 69 whose parents are alive serve as caregivers, as do 12 percent of adults age 70 and older.

I had plans for my retirement …Instead, I don’t take time off and leave my mother. A big thing I deal with is the loss of my freedom.
–Judy Last

The analysis is based on data from 80,000 interviews (some people were interviewed multiple times) conducted from 1995 to 2010 for the Health and Retirement Study. About 17 percent of adult children care for their parents at some point in their lives, and the likelihood of doing so rises with age, it reports.

That’s because parents who’ve reached their 80s, 90s or higher are more likely to have chronic illnesses and related disabilities and to require assistance, said Alice Zulkarnain, co-author of the study.

Problems Older Caregivers Face

The implications of later-life caregiving are considerable. Turning an elderly parent in bed, helping someone get into a car or waking up at night to provide assistance can be demanding on older bodies, which are more vulnerable and less able to recover from physical strain.

Emotional distress can aggravate this vulnerability. “If older caregivers have health problems themselves and become mentally or emotionally stressed, they’re at a higher risk of dying,” said Richard Schulz, a professor of psychiatry at the University of Pittsburgh, citing a study he published in the Journal of the American Medical Association.

Socially, older caregivers can be even more isolated than younger caregivers. “In your 60s and 70s, you may have recently retired and friends and family members are beginning to get sick or pass away,” said Donna Benton, research associate professor of gerontology and director of the Family Caregiver Support Center at the University of Southern California (USC).

Caregiving at an older age can put hard-earned savings at risk with no possibility of replacing them by re-entering the workforce. Yvonne Kuo, a family care navigator at USC’s caregiver support center, has been helping an 81-year-old woman caring for her 100-year-old mom with vascular dementia in this situation.

“There’s no support from family, and she’s used up her savings getting some paid help. It’s very hard,” Kuo said.

Judy Last, 70, a mother of three adult children and grandmother of six youngsters, lives with her mother, Lillian, 93, in a mobile home park in Boise, ID. Last moved in three years ago, after her mother had a bout of double pneumonia, complicated by a difficult-to-treat bacterial infection that put her in the hospital for eight weeks.

She cared for her parents for years. She didn’t know how to ask for help and no one volunteered it, even when her husband was diagnosed with dementia.

“You don’t know if it’s going to be permanent at the time,” said Last, whose father died of dementia in January 2016 after moving to a memory-care facility. “Mom had asked me several years before if I would be there when she needed help and I told her yes. But I didn’t really understand what I was getting into.”

Feinberg said this isn’t uncommon. “People in their 90s with a disability can live for years with adequate support.”

Last doesn’t find caregiving physically difficult even though she’s had two hip replacements and struggles with arthritis and angina. Her mother has memory problems and chronic obstructive pulmonary disease, relies on oxygen, uses a walker, has lost most of her hearing and has poor eyesight.

But things are hard, nonetheless. “I had plans for my retirement: I imagined volunteering and being able to travel as much as my bank account would allow,” Last said. “Instead, I don’t take time off and leave my mother. A big thing I deal with is the loss of my freedom.”

Hall, who’s turning 70 in September and who lives in Cumming, GA, managed her mother’s and husband’s complex needs for years by establishing a strict routine. Monday and Friday they went to a dementia respite program from 10 a.m. to 3 p.m. On other days, Hall cooked, shopped, did laundry, helped them with personal tasks, made sure they were well occupied, provided companionship and drove them to medical appointments, as necessary.

“I did not expect this kind of life,” said Hall, who has had two knee replacements and a broken femur. “If someone had told me it would be years caring for my mother and your husband is going to get dementia, I would have said, ‘No, just no.’ But you do what you have to do.”

A few weeks after our conversation, Hall’s mother entered hospice following a diagnosis of aspiration pneumonia and life-threatening swallowing difficulties. Hall said she has welcomed the help of hospice nurses and aides, who ask her at each visit, “Is there anything else you need from us that would make it easier for you?”

Where Caregivers Find Support

Though older caregivers get scant attention, resources are available. Over the years, Hall has shared caregiving ups and downs at CareGiving.com—a significant source of information and comfort. Across the country, local chapters of Area Agencies on Aging run caregiver support programs, as do organizations such as the Caregiver Action Network, the Family Caregiver Alliance, the National Alliance for Caregiving and Parenting Our Parents, an outfit focused on adult children who become caregivers. A helpful list of resources is available here.

Sometimes, caring for a parent can be a decades-long endeavor. In Morehead City, NC, Elizabeth “Lark” Fiore, 67, became the primary caregiver for her parents when they moved around the corner from her, in a mobile home park, in 1999.

“My dad took me for a walk one day and asked if I could look after them as they got older and I said yes. I’m the oldest child and the oldest assumes responsibility,” she said.

For years her father—a difficult man, by Fiore’s account—had heart problems; her mother had a nervous breakdown and a slow, extended recovery. “They wanted me to be in their lives and I wanted to do for them—I’m a Christian—but it was killing me. My heart was in the right place but emotionally, I was a wreck,” Fiore said.

After her father’s death from kidney cancer in 2010, her mother became even more needy, and Fiore found herself spending more time responding to calls for assistance—often about suspected medical emergencies. “My mom had a way of acting as if something was horribly wrong and then it turned out it wasn’t,” she explained.

Fiore’s health isn’t good: she says she has chronic fatigue syndrome and thyroid problems, among other issues. But she didn’t know how to ask for help and no one volunteered it, even when her husband, Robert, was diagnosed six years ago with dementia. “I always expected myself to handle everything,” she said.

Finally, the stress became unbearable last year and Fiore’s mother moved to a senior living community close to Fiore’s 62-year-old sister, 400 miles away. Now, Fiore spends more time attending to her husband’s needs and tries to support her sister as best she can.

“At 90, my mom is healthy as a horse, and I’m glad of that but it’s been a long time caring for her,” she said. “I’ve changed a lot as a result of caregiving: I’m more loving, more aware of people who are suffering. I’ve found out that I am willing to go the extra mile. But I have to admit what I feel is tired—just tired.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation.

The New Shingles Shot: Much More Effective Than the Old One

If you skip it, you could develop a painful and all-too-common disease

Shingrix, the new shingles vaccine, is so much better than the old one that medical experts are urging people who have already had the old vaccine to be revaccinated with Shingrix. But will their advice fall on deaf ears? Many older people fail to have the preventive shots that are available to them. Journalist Michelle Andrews digs into the reasons why in this article written for Kaiser Health News (KHN). The article also ran on NPR. KHN posted it on March 20, 2018.

Federal officials have recommended a new vaccine that is more effective than an earlier version at protecting older adults against the painful rash called shingles. But persuading many adults to get this and other recommended vaccines continues to be an uphill battle, physicians and vaccine experts say.

“I’m healthy, I’ll get that when I’m older,” is what adult patients often tell Michael Munger, MD, when he brings up an annual flu shot or a tetanus-diphtheria booster or the new shingles vaccine. Sometimes they put him off by questioning a vaccine’s effectiveness.

“This is not the case with childhood vaccines,” said Munger, a family physician in Overland Park, KS, who is president of the American Academy of Family Physicians. “As parents, we want to make sure our kids are protected. But as adults, we act as if we’re invincible.”

The new schedule for adult vaccines for people age 19 and older was published in February 2018 following a recommendation [the previous] October by the federal Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices and subsequent approval by the director of the CDC. The most significant change was to recommend the shingles vaccine that was approved by the Food and Drug Administration last fall, over an older version of the vaccine.

As you age, you’re more likely to develop shingles, and it’s more likely to create chronic problems for you.

The new vaccine, Shingrix, should be given in two doses between two and six months apart to adults who are at least 50 years old. The older vaccine, Zostavax, can still be given to adults who are 60 or older, but Shingrix is preferred, according to the CDC. In clinical trials, Shingrix was 96.6 percent effective in adults ages 50 to 59, while Zostavax was 70 percent effective. The differences were even more marked with age: effectiveness in adults 70 and older was 91.3 percent for Shingrix, compared with 38 percent for Zostavax. Shingrix also provided longer-lasting protection than Zostavax, whose effectiveness waned after the first year.

The guidelines suggest that people who already had the Zostavax shot be revaccinated with Shingrix.

The two-shot series of Shingrix costs about $280, while Zostavax runs $213.

“What’s remarkable [about the new vaccine] is that the high level of immunity persists even in the very old,” said Anne Louise Oaklander, MD, PhD, a neurologist who is an expert on shingles. “It’s pretty hard to get the immune system of older people excited about anything.”

Shingles is caused by the same varicella-zoster virus that causes chickenpox. The virus can re-emerge decades after someone recovers from chickenpox, often causing a painful rash that may burn or itch for weeks before it subsides. About one in three Americans will get shingles during their lifetime; there are roughly one million cases every year. People are more likely to develop shingles as they age, as well as develop complications like postherpetic neuralgia, which can cause severe, long-standing pain after the shingles rash has disappeared. In rare cases, shingles can lead to blindness, hearing loss or death.

Why Don’t More Older People Get Recommended Shots?

Although shingles vaccination rates have inched upward in recent years, only a third of adults who were 60 or older received the Zostavax vaccine in 2016.

Other adult vaccine coverage rates are low as well: 45 percent for the flu vaccine and 23 percent each for pneumococcal and tetanus-diphtheria-pertussis vaccines.

In contrast, by the time children are three years old, typically more than 80 percent of kids, and frequently more than 90 percent, have received their recommended vaccines.

What gives? Cost can be a big deterrent for adult vaccines. The federal Vaccines for Children program helps parents whose kids are eligible for Medicaid or are uninsured cover the cost of vaccines up to age 19.

Adults with private insurance who get vaccines recommended by the CDC also are sheltered from high costs because the shots must be covered by most commercial plans without charging consumers anything out-of-pocket, under a provision of the Affordable Care Act. Patients, however, should confirm their coverage before requesting the new shingles vaccine, because insurers typically add new vaccines gradually to their formularies after they have been added to the recommended list, and consumers may need to wait a little while for coverage.

Older adults sometimes lose track of which vaccines they’ve had, and sometimes there’s no record of what they’ve been given.  

But vaccine coverage under the Medicare program for people age 65 and older is much less comprehensive. Vaccines to prevent influenza and pneumonia are covered without a copayment under Medicare Part B, which covers outpatient care.

Other vaccines, including the shingles vaccine, are typically covered under Part D drug plans, which may leave some beneficiaries on the hook for all or part of the cost of the two-shot series.

That can pose a significant problem for patients. “Not every Medicare beneficiary elects Part D, and even if you do, some have deductibles and copayments,” said William Schaffner, MD, an infectious-diseases specialist at Vanderbilt University School of Medicine.

Even if adults want to get recommended vaccines, they sometimes lose track of which they have received and when. Pediatricians routinely report the vaccines they provide to state or city vaccination registries that electronically collect and consolidate the information. But the registries are not widely used for adults, who are more likely to get vaccines at various locations, such as a pharmacy or at work, for example.

“I’m always asking patients, ‘Did you get all the doses in the series?’ ‘Where did you get them?’” said Laura Riley, MD, vice chair of obstetrics at Boston’s Massachusetts General Hospital, who is a member of the Advisory Committee on Immunization Practices. “It can be very challenging to track.”

What Spirituality Means to Older People

It can provide a sense of purpose and connection—and a great deal more

This is part 1 in our series on spirituality and aging. Read part 2 here.

For many years, the Catholic faith was central to Debra Cook’s life. She grew up in a Catholic family, sent her children to Catholic schools and was an active leader in her parish. 

But now Cook, 65, of Dallas, finds herself looking beyond the walls of her church as she gets older. In recent years, her parish shifted toward a more conservative understanding of Catholicism; meanwhile, Cook’s beliefs have become increasingly more expansive.

She stopped going to mass every week, a step that once would’ve been unthinkable. Instead, she spends an hour outdoors early each morning, quietly observing nature. Cook completed an ecumenical Christian formation program that prepares participants as spiritual leaders or spiritual directors. This fall, she’ll lead a study program called the Soul of Aging, which deals with issues involved with aging but offers no specific religious doctrine.

 “I still view myself as a Jesus follower,” she said. “But my view of God has gotten so much bigger. I’ve realized there’s more out there that I don’t understand.”

Like Cook, many older adults say spirituality is an essential source of wisdom and guidance that not only helps them to cope with the challenges of aging but also to live more consciously, with a sense of wholeness and purpose.  

“Older people want meaning,” said Michael Gurian, author of The Wonder of Aging: A New Approach to Embracing Life After Fifty (2013). As people live longer lives, “we have the freedom now, in a miraculous second lifetime, to soul-search and soul-find.”

Spirituality, he adds, can help people cultivate the “realistic optimism” that will help them better navigate later life.  

Spiritual but Not Religious

The assumption that people become more religious as they age and confront their mortality is generally regarded as a myth among professionals who work with older adults, according to Holly Nelson-Becker, author of Spirituality, Religion and Aging: Illuminations for Therapeutic Practice (2018). Similarly, there’s no research that suggests an overall trend of people becoming more spiritual as they age. Older adults do represent the most religious demographic group in the United States, but Nelson-Becker suspects that’s because members of the older generations grew up when it was more common for people to participate in an organized religion.  

“What we do know is that people’s religious and spiritual trajectories change over time in many ways,” Nelson-Becker said. “People get enthusiastic, motivated, discouraged, and become more spiritual, more religious, less so, and otherwise in and out.”  

Some, like Cook, find themselves veering away from religion and into a growing segment of the population that demographers call the “SBNRs”—spiritual, but not religious. Defining exactly what that means, however, has posed a challenge.

‘Spirituality’ means different things to different people.

“Religion includes ethical principles, rituals, beliefs and practices, transmitted over time and shared by a community,” said Nelson-Becker. “The definitions of spirituality vary far more widely. Spirituality is a somewhat fuzzy concept that means different things to different people.”  

Nelson-Becker was part of an interdisciplinary team of 50 experts that developed standards of spiritual care in palliative care. They hammered out this definition: “Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”  

Life Changes Spur Shifts

Many who embrace spirituality later in life say they were spurred at least in part by changes in their life circumstances. After retirement, or a shift to part-time work, or fewer family responsibilities, they have more time for reflection.

“When you’re in your 30s, it’s all about go, go, go and get, get, get,” said Debby Thomas, 67, a real estate agent in Garland, TX. “Once you get older, those are not necessarily your top priorities.”

Thomas grew up in a Protestant church and converted to Judaism when she married in her 20s. When her marriage ended, she fell away from religion entirely. In her mid-50s, she discovered Unity Church of Dallas, a New Thought church that prescribes no doctrine but views Christian teachings as a practical path to health and happiness.

Thomas believes that maturity makes her more accepting and open to new ways of expressing her spiritual beliefs.

“When I was young, I was too busy arguing with [the church’s] dogma,” she said. “When you get older, you make it more personal, rather than trying to change the world to match your beliefs.”

Foundation for Living Longer and Healthier

One nationwide study of more than 1,000 obituaries found that people with religious affiliations lived nearly four years longer than those with no ties to religion, even after adjusting for other factors, such as gender and marital status. But researchers caution that it’s virtually impossible to separate the benefits of religion from related factors, such as the social connections among people in faith communities.

Anne Sadovsky, 77, is clear that the social and the spiritual, together, have enriched her life. A motivational speaker and real estate expert in Dallas, she’s benefited from the social support of “the Dalai Mamas,” a prayer circle of seven older women, ages 62-78, that’s been together for more than 10 years.

The women meet for birthdays and holidays, but the glue that bonds them is prayer. Via email, they share prayer requests for themselves and others. Often, they will schedule a time when they all pray at once, wherever they are, for a specific need. Originally the women met at Unity Church of Dallas, where Sadovsky is a member, but the group stayed together even after some moved to other churches.

“When the husband of one of the women died, we were all right there,” Sadovsky said. “I had major back surgery, and they were there for me. One stayed with me at the rehab facility and gave me my first shower after surgery.”    

Each woman prays according to her own understanding, Sadvosky said, but following Unity principles, they don’t see prayer as “begging or pleading” so much as a way to connect with divine energy.

“It’s a very powerful, loving support group,” she said. “Word has spread that our prayers are powerful; people we don’t even know will [ask for prayers].”

Some spiritual practices may have health benefits. Meditation, for example, may help reduce blood pressure.

Being a part of a group like the Dalai Mamas may have a positive impact on health. While the number of studies examining the links between religion, spirituality and health is mushrooming, according to Nelson-Becker, “The findings are difficult to align because they look at different factors, control for different factors, and ask slightly different questions.” While there appears to be a correlation, there’s no proof of a cause-and-effect relationship.

Some spiritual traditions do explicitly encourage adherents to avoid unhealthy behaviors. In exploring longevity hotspots, Dan Buettner identified a community of centenarians in Loma Linda, CA, in his book, The Blue Zones: Lessons for Living Longer From the People Who’ve Lived the Longest (2008). Many were Seventh Day Adventists, who don’t smoke, follow a plant-based diet, exercise regularly and maintain a normal body weight.  

Research also suggests that some specific spiritual practices, such as yoga, and meditation or prayer, may have health benefits. Meditation, for example, may help reduce blood pressure or relieve some menopausal symptoms, like hot flashes.

The Wonder of Aging author Gurian, 65, spends an hour each morning meditating in nature. He’s a practicing Jew but has lived around the world, and his spirituality draws on elements of many other religions, including Baha’i, Hinduism, Unitarianism and Christianity.  

“I think genuine happiness can come from having a spiritual practice,” he said. “As mind and body connect, that helps some people to end an addiction or to eat more healthfully. Also, there is something happening in the brain as people do spiritual practices. Spiritual practices direct more blood toward the temporal lobe, and that is good for de-stressing.”

Art as Spiritual Practice

Spiritual expression can range from communal activities like worship, scripture study or prayer, to personal practices such as journaling, meditating or spending time in nature.  

For Donna Bearden, 71, her spiritual practice centers on art and learning. She’s married to a retired United Methodist pastor but describes herself as spiritual but not religious.

“My spirituality could not develop within the church,” she said. “I believe a spiritual journey has to involve doubt, searching, asking hard questions. I couldn’t ask those questions without raising eyebrows.”

Bearden expresses her spirituality through art, writing and photography. She starts each morning writing in a journal and often heads outside with camera in hand. She’s fascinated by mandalas—a circular symbol in Hinduism and Buddhism that represents the universe—and creates them with the photos she’s taken.

“There is a zone artists and poets and other creatives talk about, the idea that words or an artist’s creation comes not from them but through them,” she said. “I have felt that zone, that connection to something greater than I.”

A Sense of Purpose

If there’s a link between spirituality and longevity, it might be ikigai (“what makes one’s life meaningful”), a Japanese term that Buettner cites in his work. Many faiths teach concepts of intrinsic human purpose that don’t require a youthful body or a sharp intellect: tikkun olam, the Jewish calling to repair the world; the Christian teaching of serving others; or the Buddhist idea of the bodhisattva, a person who chooses to strive for Buddhahood for the benefit of all sentient beings. Spiritual practices, such as meditation, can help people clarify and focus on their sense of higher calling.

Spirituality can also help older people turn outward when loss or physical limitations could easily spur them to turn inward, according to Missy Buchanan, author of Living with Purpose in a Worn-Out Body: Spiritual Encouragement for Older Adults (2008).  

“It’s the belief that ‘I’m here for a reason,’” Buchanan said. “Maybe I hurt today, but I can still do something good for somebody.”

For Cook, her work as a spiritual group leader provides a new sense of purpose and direction. In earlier years, she focused on career, raising kids, status and money—her family once lived in an 8,400 square foot home (“Isn’t that ridiculous?” she said). Those things don’t define her anymore.

“Now it’s about living a life in accord with who I was created to be,” she said. “The work I’m doing in spirituality is life-giving.”

At Death’s Door, Shedding Light on How to Live

Ronni Bennett, who blogs about aging, records her thoughts and emotions as she grapples with a terminal illness

In a moving interview, Bennett describes what’s it like to be told you’re dying of cancer. Talking with journalist Judith Graham of Kaiser Health News (KHN), she discusses how knowing that she’s terminally ill has changed her, how she’s coping and why she’s sharing her reactions and the final chapter of her life with the many people who regularly read her blog. This article was developed in part with support from the Silver Century Foundation. KHN posted it on November 8, 2018.

Nothing so alters a person as learning you have a terminal illness.

Ronni Bennett, who writes a popular blog about aging, discovered that recently when she heard that cancer had metastasized to her lungs and her peritoneum (a membrane that lines the cavity of the abdomen).

There is no cure for your condition, Bennett was told by doctors, who estimated she might have six to eight months of good health before symptoms began to appear.

Right then and there, this 77-year-old resolved to start doing things differently—something many people might be inclined to do in a similar situation.

No more extended exercise routines every morning, a try-to-stay-healthy activity that Bennett had forced herself to adopt but disliked intensely.

No more watching her diet, which had allowed her to shed 40 pounds several years ago and keep the weight off, with considerable effort.

No more worrying about whether memory lapses were normal or an early sign of dementia—an irrelevant issue now.

No more pretending that the cliché “we’re all terminal” (since death awaits all of us) is especially insightful. This abstraction has nothing to do with the reality of knowing, in your gut, that your own death is imminent, Bennett realized.

“It colors everything,” she told me in a long and wide-ranging conversation recently. “I’ve always lived tentatively, but I’m not anymore because the worst has happened—I’ve been told I’m going to die.”

No more listening to medical advice from friends and acquaintances, however well-intentioned. Bennett has complete trust in her medical team at Oregon Health & Science University, which has treated her since diagnosing pancreatic cancer last year. She’s done with responding politely to people who think they know better, she said.

And no more worrying, even for a minute, what anyone thinks of her. As Bennett wrote in a recent blog post, “All kinds of things … fall away at just about the exact moment the doctor says, ‘There is no treatment.’”

Four or five times a day, a wave of crushing fear washes through her, Bennett told me. She breathes deeply and lets it pass. And no, psychotherapy isn’t something she wants to consider.

“What has been most helpful and touched me most are the friends who are willing to let me talk about this.”

–Ronni Bennett

Instead, she’ll feel whatever it is she needs to feel—and learn from it. This is how she wants to approach death, Bennett said: alert, aware, lucid. “Dying is the last great adventure we have—the last bit of life—and I want to experience it as it happens,” she said.

Writing is, for Bennett, a necessity, the thing she wants to do more than anything during this last stage of her life. For decades, it’s been her way of understanding the world—and herself.

In a notebook, Bennett has been jotting down thoughts and feelings as they come to her. Some she already has shared in a series of blog posts about her illness. Some she’s saving for the future.

There are questions she hasn’t figured out how to answer yet.

“Can I still watch trashy TV shows?”

“How do I choose what books to read, given that my time is finite?

“What do I think about [rational] suicide?” (Physician-assisted death is an option in Oregon, where Bennett lives.)

Along with her “I’m done with that” list, Bennett has a list of what she wants to embrace.

Ice cream and cheese, her favorite foods.

Walks in the park near her home.

Get-togethers with her public affairs discussion group.

A romp with kittens or puppies licking her and making her laugh.

A sense of normalcy, for as long as possible. “What I want is my life, very close to what it is,” she explained.

Deep conversations with friends. “What has been most helpful and touched me most are the friends who are willing to let me talk about this,” she said.

Dozens of readers have responded with shock, sadness and gratitude for Bennett’s honesty.

On her blog, she has invited readers to “ask any questions at all” and made it clear she welcomes frank communication.

“I’m new to this—this dying thing—and there’s no instruction book. I’m kind of fascinated by what you do with yourself during this period, and questions help me figure out what I think,” she told me.

Recently, a reader asked Bennett if she was angry about her cancer. No, Bennett answered. “Early on, I read about some cancer patients who get hung up on ‘why me?’ My response was ‘why not me?’ Most of my family died of cancer, and 40 percent of all Americans will have some form of cancer during their lives.”

Dozens of readers have responded with shock, sadness and gratitude for Bennett’s honesty about subjects that usually aren’t discussed in public.

“Because she’s writing about her own experiences in detail and telling people how she feels, people are opening up and relaying their experiences—things that maybe they’ve never said to anyone before,” Millie Garfield, 93, a devoted reader and friend of Bennett’s, told me in a phone conversation.

Garfield’s parents never talked about illness and death the way Bennett is doing. “I didn’t have this close communication with them, and they never opened up to me about all the things Ronni is talking about,” she said.

For the last year, Bennett and her former husband, Alex Bennett, have broadcast video conversations every few weeks over YouTube. (He lives across the country in New York City.) “What you’ve written will be valuable as a document of somebody’s life and how to leave it,” he told her recently as they talked about her condition with poignancy and laughter.

Other people may have very different perspectives as they take stock of their lives upon learning they have a terminal illness. Some may not want to share their innermost thoughts and feelings; others may do so willingly or if they feel other people really want to listen.

During the past 15 years, Bennett chose to live her life out loud through her blog. For the moment, she’s as committed as ever to doing that.

“There’s very little about dying from the point of view of someone who’s living that experience,” she said. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation, Gordon and Betty Moore Foundation and The Silver Century Foundation.

Many Women Are Defying the Bully: the Antiaging Industry

They’re keeping the gray and tuning out the antiaging hype

At age 57, Victoria Marie sports a full head of long, lustrous gray hair—in the city of Los Angeles, as an actress, in an industry where youth is life. “This is who I am,” she says. “Take it or leave it.”

Across the country, in North Carolina, Martha Truslow Smith embraces her premature gray—at age 26. “I never want to pick up a bottle of dye again,” says the graphic designer.

With its ubiquitous hair dyes, creams, injectables and surgeries, the antiaging industry is a multibillion-dollar field. Yet more and more women are declaring they’re done with it. They’re done with being told aging is shameful. They’re done with spending money, time and effort to hide signs of aging—particularly gray hair. And some of them insist this anti-antiaging trend is here to stay, despite a bevy of naysayers.

The Visible Rebellion

Truslow Smith found her first gray hair at age 14. By the time she was in college, she was dyeing her hair and feeling embarrassed by her gray roots.

The cycle of dye-and-shame was “a slow, quiet monster that developed in my life that I didn’t allow myself to really acknowledge,” she says.

At age 24, she decided to face it. She was in a relationship and realized she wasn’t truly being herself. She was hiding a ball of stress from a man she wanted to marry. So in the summer of 2016, Truslow Smith stopped dyeing her hair—and started an Instagram account called Grombre to chart her growing-out process and to build a supportive community. She invited people who celebrated silver to message her and be featured on the account.

In July 2018, the account had about 7,000 followers. Then Refinery29, a women-focused online outlet, wrote an article about it, followed by BBC News and other media organizations (unsolicited). Now, Grombre has about 46,000 followers and almost 1,000 posts featuring women of all ages. And Truslow Smith (now married to the aforementioned gent, who “loves” her hair) gets so many emails from women wanting to tell their stories that she can’t possibly feature them all.

Women who decide to go gray naturally say they’re tired of dyeing. And then there’s the double standard: on men, gray hair is considered distinguished.

She’s found the massive interest surprising and wonderful. “It’s a change I would like to see in the world—to have women feel like, if they don’t want to dye their hair, then they shouldn’t be obligated to do so.”

For her part, Victoria Marie feels no such obligation. In the summer of 2013, when she was in her early 50s, she uploaded a video to YouTube about her gray roots. She was recovering from a series of bad dye jobs and had decided to let her gray hair grow in fully, like she used to have it. She titled the video, “Gray Is the New Blonde!”

Women started emailing her—excited to tell her how much they related to what she was saying. “I thought, ‘This is interesting. People care about gray hair? How bizarre.’ I had no idea,” she says. Many told her they were letting their gray hair grow in too.

Now, in 2018, Marie is preparing to release her first documentary, Gray Is the New Blonde, which profiles women who have decided to go gray. The film’s Facebook page has about 13,000 followers.

“Women are saying, ‘I’m here, and this is my path, and take it or leave it. I’m not going to shrink to societal pressures anymore and feel like I’m not worth anything unless I do. I’m very worth something, with gray hair and all.’”

Who Goes Gray

Both Truslow Smith and Marie say the most common reason women decide to gray naturally is they’re tired of the dye process. “They are just fed up with this every two to three weeks of having to go get their hair done,” says Marie. “And it’s no longer fun like it was when we were in our 20s and 30s. It’s a requirement now.”

Many cite the double standard—that gray hair on men is usually considered distinguished. They decide, “What’s wrong with my gray hair? It looks good!” she says.

Some women also stop dyeing their hair for health reasons—for example, if they’ve had cancer and want to avoid the chemicals.

One woman told Truslow Smith, “I lost my son, and he will never have the chance to go gray.”

“It’s a combination of women kind of being fed up with being bullied [by antiaging marketing messages] and realizing that there is so much more to life—that we only have so much energy; why are we spending it on things that at the end of the day don’t totally matter?” Truslow Smith says.

But another common theme among these women is fear. In a culture that values women for their looks and equates beauty with youth, women who are considering going gray are often afraid they’ll be rejected—for work, by potential romantic partners, by family members, even by strangers. And many times, those fears are realized.

“A lot of people get a lot of negative comments and feedback and pushback,” Marie says. She knows of one woman in her 30s who was in a training class for administrative work. “She’s got great features, and she looks so chic, but that male instructor shamed her verbally in front of everyone in the class and said, ‘You’re not going to get hired if you don’t go and dye your hair,’ and brought her to tears.”

When Marie started growing her gray out, one of her friends pressured her to dye it, to the point that he offered to cover the cost. Later, she realized his protests were actually related to how he viewed his own aging. “Typically that’s what it’s about,” she says. “It’s not about the person who’s decided to go gray. It’s about the person who’s saying to them, ‘You should go dye your hair.’ It’s because of their own fears and their own insecurities about the aging process.”

Women who do go gray despite any negative pressures tell Marie they have one regret: they wish they’d done it sooner. “Women say over and over again, they did not expect to feel so empowered, so authentic,” Marie says. “They feel fierce, they feel strong, they feel powerful. And they’re rockin’ it.” For that reason, she believes, this trend is no fad. “It is a movement, and it’s not going away.”

Wrinkles: to Fight or Not to Fight

Gray hair is one thing. Wrinkles? That’s another matter. If a woman goes gray and doesn’t like it, it’s easy enough to dye her hair back. Wrinkles are harder to get rid of.

Even women who go naturally gray aren’t always so gung-ho about ditching antiwrinkle creams—despite the fact that scientists and dermatologists say most such creams don’t work.

Often, it boils down to fear of regret, says Abigail Brooks, author of The Ways Women Age: Using and Refusing Cosmetic Intervention (2017). They’re afraid they’ll end up looking older than their friends who use antiaging creams and procedures. And they also face some guilt.

Per pervasive marketing messages, “to age well, particularly as a woman, means that you should be fighting aging every step of the way,” Brooks says. The idea is, “this product gives you the power to fight back, and therefore you should say yes to that fight.”

The antiaging industry itself is ready to embrace aging at least partially—or it wants to sound as if it is.

For her book, Brooks did find women who were refusing antiaging creams and procedures. And she discovered a main commonality: they accepted aging as a natural process that didn’t need fixing.

“They actually talked about being able to understand the wrinkles and the sags and the bags and the gray hair as beautiful, just in different ways from how a young, wrinkle-free female face might look,” she says. They saw these signs of aging as “reflective of lived experience and actions taken and thoughts had and emotions felt. And they thought that that was a really interesting kind of beauty.”

Many women also said they were less focused on attracting male attention. “It’s like they’ve moved beyond that cultural expectation of the reproductive-vessel-slash-sex object, and that allows them this whole new, exciting phase of life,” Brooks says. “They feel like, I’m going to feel empowered to focus more on my mind now or more on other aspects of what I always have wanted to do.”

On the other hand, when Brooks interviewed women who did use antiaging creams and procedures, she found that they equated beauty with youth. Age-related changes “made them feel like their bodies were outside of their control,” Brooks says. Some “talked about needing to look younger to continue to be viable in their workplaces.” Others wanted to find a new male partner.

These women told Brooks that unlike men, they had to look younger to be taken seriously. “I think we have to say, but is that really OK?” Brooks says. “Is that where we want to be?”

The Antiaging Market

As the number of older Americans has increased, so has rebellion against antiaging marketing, with people asking why signs of aging must be hidden or “fixed” or “treated.”

In the summer of 2017, the beauty magazine, Allure, declared it would stop using the term antiaging altogether. “I hope we can all get to a point where we recognize that beauty is not something just for the young,” wrote editor-in-chief Michelle Lee in a letter from the editor—while also clarifying, “no one is suggesting giving up retinol” (probably the best-studied antiaging ingredient).

The antiaging industry itself is on board with this embrace-aging-to-some-extent idea too. Or, at least, it wants to sound like it is.

“We’re not anti-aging, we’re anti-wrinkles,” declares Neutrogena (whose Healthy Skin Anti-Wrinkle cream is marketed to “treat” wrinkles “and other signs of aging”).

In a CoverGirl television ad, model Maye Musk muses, “They say at a certain age, you just stop caring. I wonder what age that is” (as she applies a foundation that “reduces the look of wrinkles” and a graphic notes she’s “70 years young”).

Antiaging marketing has largely evolved from “aging is a problem” to the supposedly more empowering, “you are the solution.” Take charge, the ads declare. Fight! Nurture yourself!

In some ways, the revised messaging is a welcome change, says Brooks, who is director of the women’s studies program at Providence College in Rhode Island. But in other ways, it continues to reinforce the mindset that looking your best means looking as young as possible.

Nonetheless—and despite the fact that many women are shunning these products—the marketing seems to be working pretty well. Statistics about the size of the antiaging market vary widely, in part because they don’t all include the same sectors (such as cosmetics, cosmeceuticals, pharmaceuticals, exercise equipment, surgeries, even perfumes touted to make women smell younger). Estimates range from under $100 billion to more than $300 billion. But the general consensus is, the market is huge, and it’s growing.

Some of that growth is due to the fact that the industry has diversified its target audience, points out Toni Calasanti, a sociology professor at Virginia Tech who specializes in gender and aging. “More and more people are getting pulled in and at younger and younger ages,” she says. Women in their 20s are now key antiaging targets—as are men. “There are some gender differences, but the similarity across all groups is, we need to not look old.”

Aging with Freedom

Women who eschew antiaging products and procedures “talk to me in so many interesting and exciting ways about new room for growth, for freedom, for exploration and even liberation with age,” Brooks says. “They feel like now they can move into new avenues where they have more room for self-development or self-expression.”

Truslow Smith has a similar take. “I’m getting the sense that women who are embracing their gray hair are entering a new chapter of life that is unexpected, and they’re finding a new sort of love and contentment with themselves.”

Both Truslow Smith and Marie emphasize that they’re not suggesting it’s bad for a woman to dye her hair. They just want women to have a viable choice.

“We operate within beauty standards that have been a big bully,” Truslow Smith says. At 26, she recognizes that as the years go by, she’ll develop a lot more wrinkles, gray strands and other signs of aging. “Am I going to choose to believe that my value is decreasing as I’m getting older? Or am I going to choose to absolutely love myself and my full potential—and walk my path the way that I feel called to walk?” Self-acceptance, Truslow Smith says, “is a revelation that is not expressed within any sort of beauty advertisement—that women are claiming for themselves.”

Bucking Ageism in Philanthropy

Five Organizations That Make Older People’s Lives Easier

This is part 2 in our series on aging-related philanthropy. Read part 1 here.

There are a lot of problems in the United States.

Take the fact that our country is aging. By 2035, Americans 65 and older will outnumber kids for the first time in our history, according to the US Census Bureau.

The fact that we see that as a problem, not an opportunity, is a problem.

The fact that we haven’t made adjustments to this reality—in health care, government programs, cultural mind-set and practical accessibility—is a problem.

There are lots of problems.

But there are also charitable organizations standing in the gap right now, as our country—and our world—scramble to catch up with the new demographic reality. They’re helping older people, creating innovative solutions and leveraging the benefits of an aging America.

Yet, despite the fact that 15 percent (and growing) of Americans are 65 or older, only a small amount of money from grant-making foundations—perhaps less than 1 percent—goes to aging-focused initiatives.

Nonetheless, some aging-related charities are raising money and making significant impacts across the nation. Here are five of them—and what their leaders think about the philanthropic landscape.

Encore.org

“While many see our aging society as a problem, we view it as a solution,” says Encore.org’s website. “For the first time in history, many of us have an extra 20 or 30 ‘bonus’ years of active, healthy life, after having developed extensive skills, knowledge and life experience.”

Through specialized programs, Encore.org connects such people with volunteer and work opportunities that address social issues—especially those related to young people and their futures.

The Encore campaign that’s generated the most interest from grant-making foundations is Generation to Generation, which connects people over 50 with nonprofits that help kids.

“The campaign, which now includes 140 nonprofits, can help young people thrive in all kinds of ways, from literacy to job training,” Encore.org’s founder and CEO, Marc Freedman, wrote in an email interview. The program can also help fight loneliness at both ends of the age spectrum.

But why has it, in particular, drawn such keen interest? “Perhaps the potential of cross-generational unity in these divisive, kids-versus-canes times is an appealing tonic,” Freedman theorized.

Through another of Encore.org’s programs, Encore Fellowships, skilled people who want to transition to a career in the nonprofit sector are placed in short-term assignments with charitable organizations. These fellows are paid for their work, though relatively little.

“The organizations benefit unbelievably,” says Paul Irving, chairman of the board for Encore.org. “You can imagine having somebody who was a chief financial officer, or a general counsel, of a major company, who now goes into a small nonprofit and helps that nonprofit survive and sustain and elevate. And the people who do it find incredible joy in the work, and a new sense of meaning, and a sense of the possibilities of their longer lives.”

Over the years, Encore.org has managed to land grants for various projects from a number of foundations.

“I would hardly say it’s been easy,” Freedman wrote, acknowledging that there’s ageism in philanthropy just like everywhere else. “We have to make older generations standing up for and with younger ones the norm in later life—and that’s going to take innovation, investment, an army of activists and years of hard work. It’s the only way to make this more-old-than-young world work for all generations.”

The Green House Project

Most anyone who works in long term care today knows about the Green House Project—a person-centered, nursing home model with around 250 member homes in 33 states. But in 2005, there was just one Green House in one Mississippi town.

That’s when the Robert Wood Johnson Foundation stepped in with a five-year, $10 million, replication grant to launch such homes across the country.

“I don’t know what we would have ever done without their support,” says Susan Ryan, senior director of the Green House Project. “Robert Wood Johnson recognized that if ever there was a field that needed this transformation, it was this field. And the model certainly offered promise.”

The Green House Project helps organizations, which pay a technical-assistance fee, develop home-like, family-centered nursing homes, in lieu of traditional hospital-like facilities. Green House homes are small—with just 10 to 12 people living in their own private rooms. These homes have open-access kitchens and living rooms. And respectful care is prioritized: each resident is to be treated as a unique human and afforded appropriate autonomy.

Ryan came to Green House after spending years working to keep people out of nursing homes. She’d seen firsthand how they worked. When she was director of nursing at one in the ’80s, tying people to their beds and chairs to prevent falls was considered best practice, she explains. “I knew in my heart of hearts, this is wrong; this is dreadfully wrong.” (Today, such liberal use of restraints is illegal.)

So in 2001, she transitioned to home care and worked in her community to come up with creative solutions. But by 2008, she saw promise in the Green House Project, and she joined the company as senior director.

On TV, you don’t see anybody raising money who’s the poster child for problems that affect older people.

“Green House is not just a small-house movement, but it is a movement to deinstitutionalize, destigmatize and humanize care for elders,” Ryan says.

With its $10 million grant, the Robert Wood Johnson Foundation mandated that the Green House Project become a viable, sustainable business, Ryan says.

They’re getting there. Right now, about 75 percent of the general operating budget comes from partner fees. “We don’t want [the] cost to work with us to be a barrier to implementation and adoption of the model,” Ryan says. “So we try to keep our fees at a pretty decent rate.”

Yet even if fees eventually cover 100 percent of the budget, Ryan believes she’ll still seek out grants to help Green House continue to innovate.

Like many other leaders who work with older people, she’d like to see aging-related issues in general supported more—and maybe get a little publicity. “Look at TV. You’re not seeing people raising money for aging issues,” she points out. “Nobody that is aging becomes the poster child for raising money.”

“What we do with every engagement that we have with the Green House partners is to try to create those champions and those advocates,” she says. “Hopefully it starts changing the landscape and foundations could maybe stand up and take notice.”

Health Affairs

While the Green House Project helps shape long term care, home by home, Health Affairs helps shape health care, article by article.

A respected, health-policy journal founded by the nonprofit Project HOPE (Health Opportunities for People Everywhere), Health Affairs publishes papers about ways to improve health care.

And the John A. Hartford Foundation has helped ensure that since 2015, a good portion of those papers highlights innovative care models for older adults.

The grant makers at Hartford chose to support Health Affairs because they knew it had influence, explains George Suttles, Hartford’s program officer for the grant.

Health Affairs has a long track record of being able to get stories into the hands of practitioners and policy makers on both the state and federal level,” he says. “So when we were thinking about disseminating models of care and best-practice models, Health Affairs seemed to be one of the logical partners,”

It’s very important to us … that we’re not just advancing knowledge but that we’re changing practice and that we’re improving public policies.

–Alan Weil, Editor in Chief, Health Affairs

The two-year grant renewal for 2018 and 2019 calls for at least 10 to 14 articles about geriatric care—plus publicity for the articles and a briefing in Washington, DC, about them.

The John A. Hartford Foundation specializes in “improving the care of older adults,” so its mission happens to match Health Affairs’ well anyway, explains Alan Weil, the journal’s editor in chief.

Health Affairs is an empirical journal. People are looking for results from experiments or innovations,” he says. “They’re trying to figure out what works and ‘what can we try to do.’ And so [Hartford’s] interest in innovative care-delivery models fits very well with the kind of papers we like to publish—and the kind of papers our readers like to read.”

Over the years, the Hartford-funded series has had influence, says Weil. For example, a 2017 article about an initiative to reduce avoidable, expensive hospitalizations among nursing home residents became the journal’s 10th most read article of the year. It got a lot of publicity, Weil says, which helped make it more likely that the reported efforts would continue—and that more facilities would adopt similar measures.

Health Affairs has also received grants from other foundations to publish aging-related articles. “What’s interesting about aging is that it’s multifaceted,” Weil says, though some facets are easier to get funded than others. It all depends on what a foundation is interested in. “For example, John A. Hartford is very interested in age-friendly hospitals. I don’t know anyone else who’s working in that area,” says Weil.

“It’s very important to us—and it’s very important to the foundations that support us—that we’re not just advancing knowledge but that we’re changing practice and that we’re improving public policies,” Weil says.

ElderHelp of San Diego

Eighty-seven percent of people 65 and older want to remain in their own homes as they age, according to a 2014 AARP report.

ElderHelp of San Diego is working to make that desire a reality.

ElderHelp offers a menu of solutions, including rides and nonmedical in-home aid (such as grocery shopping and safety-bar installation)—all provided by volunteers.

There’s also a home-share program in which people are matched for mutual benefit. For example, a younger person might live with an older person in exchange for doing household chores. The older person gets help and companionship, and the younger person gets a financial leg up in one of the most expensive cities in the United States.

In 2018, California State Senator Toni Atkins named ElderHelp nonprofit of the year in her district.

Because there are no fees for ElderHelp’s services, individual donations and grants keep the organization running. Ninety percent of ElderHelp’s clients are living on low income, says Gretchen Veihl, the organization’s director of philanthropy. “Grant funding is really the backbone of the agency.”

She finds it challenging to locate funders whose priority is older people. “When you’re applying for a grant, seniors are never on a drop-down menu,” she notes. Health, illnesses, education, children may all be there, but rarely older people.

To entice and keep funders, ElderHelp maintains careful documentation of its impact. “For example, we know that ElderHelp clients have 10 percent fewer falls in the home than the average San Diego senior, and 92 percent of our clients feel more safe in their home because they have ElderHelp services,” Veihl says. With this evidence, “people see the value in investing in your agency and feel confident that you’re doing what you say you do and using your dollars well.”

Adopt-a-Native-Elder

Adopt-a-Native-Elder also helps older people remain in their own homes—or, rather, survive there.

The organization provides life-sustaining aid to Navajo elders who have traditionally lived off the land and can no longer do so effectively.

“These elders were self sufficient. They had sheep, they wove their rugs, they were silversmiths,” explains Linda Myers, founder of Adopt-a-Native-Elder. “The problem being what happens when you’re too old to leave, you have to sell your sheep because you can’t take care of them anymore, and you can no longer do silversmithing.”

And you live with no running water or electricity—where, in some areas, of the 27,000-square-mile reservation, temperatures can plunge well below zero. “It’s a third-world country within our own United States,” Myers says.

Adopt-a-Native-Elder provides essentials such as food, medical supplies and firewood to about 570 elders who live on the Navajo Nation reservation in Utah and Arizona. The elders are 75 and older—sometimes much older. “I had a 116- and a 114-year-old elder,” Myers says. They have no pensions and don’t receive enough Social Security to survive on.

Their families, the reservation and state governments try to help, but there’s not enough money to go around. “Many of their children, because they take care of the elders, live a very impoverished lifestyle,” Myers says.

Providing something as simple as firewood can save lives. “If you’re elderly and you don’t have electricity, it can be pretty cold,” Myers explains. “If they don’t have wood, then they freeze to death.”

In March 2017, CNN profiled Myers as a “CNN Hero” for the difference she’s making. But even heroes struggle. In particular, Myers has had trouble getting interest from foundations.

We found children [cared for by] elders quite often—and very old elders who didn’t have vehicles and didn’t drive.

Linda Myers

She used to incorporate children’s programs into Adopt-a-Native-Elder—providing Christmas stockings, backpacks and shoes. “I could get more funding for those programs than I could for the elders,” she says. “That was very unfortunate, because the only reason we started those programs is because so many young children were left with the elders.”

The children’s parents would leave the reservation to find work, only coming home on weekends. “So we found children with elders quite often—and very old elders who didn’t have vehicles and didn’t drive.”

Myers believes more foundations are willing to donate money for children than elders because “they see a future in children”: with a little leg up, kids might move out of poverty.

One challenge in getting grants for the Navajo elders is that people just can’t fully grasp their predicament, Myers says. “They can envision homeless, but they can’t envision people who actually live off the land and have survived to be in their 100s.”

And modern, online grant writing doesn’t allow for much education. “Today when you write a grant, it’s usually, ‘In 10 words or 30 words, describe what you do,’” Myers says. “They’ve cut it down to just the pure basics.”

Myers has the best luck getting grants from people who have volunteered or traveled with her and happen to have family foundations. “They see a need, they tell family, they adopt an elder.”

Local foundations that give small grants are also important sources of support, as is the American Express Foundation. “American Express in Utah has done a lot of work out on the reservation, and so they actually understand what our organization does,” says Myers. “They see what we do.”

“Caring for these elders is kind of a window of time. The traditional ones are now in their late 80s, 90s and 100s,” Myers says, explaining that unlike their children and grandchildren, these elders never learned English, never went to school and always lived a traditional lifestyle. “Caring for them is a huge need.”

Working Together for the Future

These five charities are changing the world in their own unique ways—with the help of foundations that see the value in investing in older people.

But there is much more to be done.

“Changing fatalistic attitudes toward aging is the best way to increase philanthropic funding of aging issues,” says Katherine Klotzburger, founder and president of the Silver Century Foundation, which commissioned this article.

Silver Century’s most recent grants have focused on journalism projects—both articles and documentaries—that Klotzburger hopes will challenge such attitudes and combat ageism across a wide sphere.

Nathaniel McParland, who served on the board of the Retirement Research Foundation for almost 30 years before retiring in 2018, is already seeing promising trends.

“I think the elderly have finally gotten a voice of their own,” he says. “The politicians are paying more attention to them than ever. And I think this trend will probably continue.”

Ultimately, such a trend will benefit people of all ages. “Unlike gender and race and religion and other things, aging really is a common bond that should bring us together,” says Paul Irving, who’s chairman of the Milken Institute for the Future of Aging, in addition to being chairman of the board for Encore.org.

“Every single one of us has a stake in ensuring that older people have a healthier future, have a more productive and engaged future, have an opportunity to realize their dreams and aspirations, have an opportunity to connect and learn, and an opportunity to contribute,” he says. “And we should all be working together to make sure that is possible.”

Have You Outlived Your Old Friends?

Here’s how to make new ones as you age

Many people are living longer, healthier lives today, but there’s one drawback: you may outlive the old friends you always counted on. It’s harder to make new ones in your later years, but there are ways to do it, and journalist Bruce Horovitz rounds them up in this article for Kaiser Health News (KHN). It was posted on the KHN website on July 9, 2018, and also ran on USA Today.

Donn Trenner, 91, estimates that two-thirds of his friends are dead.

“That’s a hard one for me,” he said. “I’ve lost a lot of people.”

As baby boomers age, more and more folks will reach their 80, 90s—and beyond. They will not only lose friends but face the daunting task of making new friends at an advanced age.

Friendship in old age plays a critical role in health and well-being, according to recent findings from the Stanford Center on Longevity’s Sightlines Project. Socially isolated individuals face health risks comparable to those of smokers, and their mortality risk is twice that of obese individuals, the study notes.

Baby boomers are more disengaged [from] their neighbors and even their loved ones than any other generation, said Dr. Laura Carstensen, who is director of the Stanford Center on Longevity and herself a boomer, in her 60s. “If we’re disengaged, it’s going to be harder to make new friends,” she said.

Trenner knows how that feels. In 2017, right before New Year’s, he tried to reach his longtime friend Rose Marie, former actress and costar on the 1960s sitcom The Dick Van Dyke Show. Trenner traveled with Rose Marie as a pianist and arranger doing shows at senior centers along the Florida coast more than four decades ago.

“When we were performing, you could hear all the hearing aids screaming in the audience,” he joked.

The news that she’d died shook him to the core.

Although she was a friend who, he said, cannot be replaced, neither her passing nor the deaths of dozens of his other friends and associates will stop Trenner from making new friends.

That’s one reason he still plays, on Monday nights, with the Hartford Jazz Orchestra at the Arch Street Tavern in Hartford, CT.

Genuine friendships grow from repeated contacts. You don’t meet someone and immediately become best friends.

For the past 19 years, he’s been the orchestra’s pianist and musical conductor. Often, at least one or two members of the 17-piece orchestra can’t make it to the gig but must arrange for someone to stand in for them. As a result, Trenner said, he not only has regular contact with longtime friends but keeps meeting and making friends with new musicians—most of whom are under 50.

Twice divorced, he also remains good friends with both of his former wives. And not too long ago, Trenner flew to San Diego to visit his best friend, also a musician, who was celebrating his 90th birthday. They’ve known each other since they met at age 18 in the United States Army Air Corps. They still speak almost daily.

“Friendship is not [to] be taken for granted,” said Trenner. “You have to invest in friendship.”

Even in your 90s, the notion of being a sole survivor can seem surprising.

Perhaps that’s why 91-year-old Lucille Simmons of Lakeland, FL, halts, midsentence, as she traces the multiple losses of friends and family members. She has not only lost her two closest friends, but a granddaughter, a daughter, and her husband of 68 years. Although her husband came from a large family of 13 children, his siblings have mostly all vanished.

“There’s only one living sibling—and I’m having dinner with him tonight,” said Simmons.

Where to Find New Friends

Five years ago, Simmons left her native Hamilton, OH, to move in with her son and his wife in a gated, 55-and-over community midway between Tampa and Orlando. She had to learn how to make friends all over again. Raised as an only child, she said, she was up to the task.

Simmons takes classes and plays games [in] her community. She also putters around her community on a golf cart (which she won in a raffle), inviting folks to ride along with her.

For his part, Trenner doesn’t need a golf cart.

His personal formula for making friends is music, laughter and staying active. He makes friends whether he’s performing or attending music events or teaching.

Simmons has her own formula. It’s a roughly 50-50 split of spending quality time with relatives (whom she regards as friends) and nonfamily friends. The odds are with her. This, after all, is a woman who spent 30 years as the official registrar of vital statistics for Hamilton. In that job, she was responsible for recording every birth—and every death—in the city.

Experts say they’re both doing the right thing by not only remaining open to new friendships but constantly creating new ways to seek them out—even at an advanced age.

Genuine friendships at any age typically require repeated contact, said Dr. Andrea Bonior, author of The Friendship Fix: The Complete Guide to Choosing, Losing and Keeping Up with Your Friends (2011). She advises older folks to join group exercise classes or knitting or book clubs.

She also suggests that seniors get involved in “altruistic behavior,” like volunteering in a soup kitchen or an animal shelter or tutoring English as a second language.

It’s important to create support systems that don’t isolate you with your own generation.
–Alan Wolfelt

“Friendships don’t happen in a vacuum,” she said. “You don’t meet someone at Starbucks and suddenly become best friends.”

Perhaps few understand the need for friendship in older years better than Carstensen, who, besides directing the Stanford Center on Longevity, is author of A Long Bright Future: Happiness, Health and Financial Security in an Age of Increased Longevity (2009).

Carstensen said that going back to school can be one of the most successful ways for an older person to make a new friend.

Bonior recommends that seniors embrace social media. These social media connections can help older people strike up new friendships with nieces, nephews and even grandchildren, said Alan Wolfelt, an author, educator and founder of the Center for Loss and Life Transition.

“It’s important to create support systems that don’t isolate you with your own generation.”

Many older folks count their children as their best friends—and Carstensen said this can be a big positive on several levels.

“I don’t think it matters who your friends are,” she said. “It’s the quality of the relationship that matters most.”

KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.

Everything You Need to Know about the New Medicare Cards

They’re designed to prevent identity theft, but fresh scams keep cropping up

Journalist Judith Graham pulls together what you need to know about the new Medicare cards that are being mailed out now to replace the old ones. She’s a contributing columnist for Kaiser Health News (KHN), which posted her article on March 15, 2018.

In April, the government [started] sending out new Medicare cards, launching a massive, yearlong effort to alter how 59 million people enrolled in the federal health insurance program are identified.

Historically, Medicare ID cards have been stamped with the Social Security numbers of members—currently, about 50 million seniors and 9 million people with serious disabilities. But that’s been problematic: if a wallet or purse were stolen, a thief could use that information, along with an address or birthdate on a driver’s license, to steal someone’s identity.

For years, phone scammers have preyed on older adults by requesting their Medicare numbers, giving various reasons for doing so. People who fall for these ruses have found bank accounts emptied, Social Security payments diverted or bills in their mailboxes for medical services or equipment never received.

The new cards address these concerns by removing each member’s Social Security number and replacing it with a new, randomly generated, 11-digit “Medicare number” (some capital letters are included). This will be used to verify eligibility for services and for billing purposes going forward.

What to Expect and When

Such a major change can involve bumps along the way, so there will be a transition period during which you can use either your new Medicare card or your old card at doctors’ offices and hospitals. Both should work until Dec. 31, 2019.

If you forget your new card at home, your doctor’s staff should be able to look up your new Medicare number at a secure computer site. Or they can use information that’s already on file during the transition period.

“We’ve had a few people contact us and ask, ‘If I don’t have the new card at a doctor’s appointment, does that mean my provider won’t see me?’” said Casey Schwartz, senior counsel for education and federal policy at the Medicare Rights Center. “That shouldn’t be an issue.”

Cards will be sent to people covered by Medicare on a rolling basis over a 12-month period ending in April 2019. Older adults in Alaska, California, Delaware, the District of Columbia, Hawaii, Oregon, Pennsylvania, Virginia and West Virginia [were] the first to receive the mailings, between April and June, along with several US territories—American Samoa, Guam and the Northern Mariana Islands.

The last wave of states will be Kentucky, Louisiana, Michigan, Mississippi, Missouri, Ohio and Tennessee, along with Puerto Rico and the Virgin Islands.

“If your sister who lives in another state gets her card before you, don’t fret,” the Federal Trade Commission explained in a new alert. Since the cards are going out in waves, “your card may arrive at a different time than hers.”

If you think Social Security might not have your current address, call 1-800-772-1213 or check your online Social Security account at https://www.ssa.gov/myaccount/, the FTC advised.

New Cards, New Scams

When you get your new Medicare card, don’t throw your old one in the trash. Instead, put it through a shredder or “spend time cutting it up with a pair of scissors” to make sure the part showing your Social Security number is destroyed, said Amy Nofziger, a fraud expert for AARP.

Those numbers remain sought after by scammers, and AARP and Senior Medicare Patrol groups tell of receiving fraud reports related to Medicare cards since last year.

In one scam, reported by California’s Area 1 Agency on Aging, a caller purporting to represent Medicare or another government agency claims to need your bank account information so Medicare can arrange a direct deposit of funds into your account. The new Medicare cards are used as an excuse for the call.

In another, circulating in Iowa, scammers are threatening to cancel seniors’ health insurance if they don’t give out their current Medicare card numbers. “We’re telling people, don’t ever give someone this number—just hang up,” said Nancy Ketcham, elder rights specialist at the Elderbridge Agency on Aging, which serves 29 counties in northwestern Iowa.

A month ago, Alfonso Hernandez, 65, who lives in Moreno Valley, CA, received a call from a man who told him, in Spanish, that Medicare was going to issue new cards and that he needed to verify some information, including Hernandez’s name, address and Social Security number.

“I said no, normally, I don’t give my Social Security number to anyone,” Hernandez said. At that point, the caller put his “supervisor” on the phone, who said the government needed to make sure it had correct information. Caught off guard, Hernandez recited his Social Security number and, “as soon as I did that, they hung up.”

“Immediately, I’m like, ‘Oh my God, what did I do?’” said Hernandez, who quickly contacted credit agencies to have them put an alert on his account. “I just keep praying that nothing happens.”

Medicare will never phone you or email you to ask for your Medicare number, old or new, but scammers may.

Just last week, California’s Senior Medicare Patrol program received a report of another scam detected in Riverside County: a caller claiming that before a senior can get a new Medicare card, he or she has to pay $5 to $50 for a new “temporary” card, according to Sandy Morales, a case manager with the program.

Nofziger of AARP said a Medicare representative will never contact an older adult by phone or email about the new cards and will certainly “never ask for money or personal information or threaten to cancel your health benefits.” The new Medicare cards are free and you don’t need to do anything to receive one: they’re being sent automatically to everyone enrolled in the program. Don’t give out any information to callers who contact you by phone, she advised.

If you suspect fraud, report it to the FTC, [or] AARP’s fraud help line, 1-877-908-3360, or your local Senior Medicare Patrol program.

If you’re among nearly 18 million seniors and people with serious disabilities who have coverage through a Medicare Advantage plan, keep the card that your plan issued you. Medicare Advantage plans are offered by private insurance companies, which have their own way of identifying members. Similarly, if you have prescription drug coverage through Medicare—another benefit offered through private insurance companies—keep your card for that plan as well.

KHN’s coverage of these topics is supported by John A. Hartford Foundation and The SCAN Foundation.