Now More Of Us Can Count On More Time Dodging The Dementia Bullet

You’ve turned 65 and exited middle age. What are the chances you’ll develop cognitive impairment or dementia in the years ahead?

New research about “cognitive life expectancy” — how long older adults live with good versus declining brain health — shows that after age 65 men and women spend more than a dozen years in good cognitive health, on average. And, over the past decade, that time span has been expanding.

By contrast, cognitive challenges arise in a more compressed time frame in later life, with mild cognitive impairment (problems with memory, decision-making or thinking skills) lasting about four years, on average, and dementia (Alzheimer’s disease or other related conditions) occurring over 1½ to two years.

Even when these conditions surface, many seniors retain an overall sense of well-being, according to new research presented last month at the Population Association of America’s annual meeting.

“The majority of cognitively impaired years are happy ones, not unhappy ones,” said Anthony Bardo, a co-author of that study and assistant professor of sociology at the University of Kentucky-Lexington.

Recent research finds that:

Most seniors don’t have cognitive impairment or dementia. Of Americans 65 and older, about 20 to 25 percent have mild cognitive impairment while about 10 percent have dementia, according to Dr. Kenneth Langa, an expert in the demography of aging and a professor of medicine at the University of Michigan. Risks rise with advanced age, and the portion of the population affected is significantly higher for people over 85.

Langa’s research shows that the prevalence of dementia has fallen in the U.S. — a trend observed in developed countries across the globe. A new study from researchers at the Rand Corp. and the National Bureau of Economic Research finds that 10.5 percent of U.S. adults age 65 and older had dementia in 2012, compared with 12 percent in 2000.

Because the population of older adults is expanding, the number of people affected by dementia is increasing nonetheless: an estimated 4.5 million in 2012, compared with 4.1 million in 2000.

More years of education, which is associated with better physical and brain health, appears to be contributing to this phenomenon.

But gains are unequally distributed. Notably, college graduates can expect to spend more than 80 percent of their lifetime after age 65 with good cognition, according to a new study from researchers at the University of Southern California and the University of Texas at Austin. For people who didn’t complete high school, that drops to less than 50 percent.

This research looks at the older population as a whole and can’t predict what will happen to any given individual. Still, it’s helpful in getting a general sense of what people can expect.

An expanding period of good brain health. With longer lives and lower rates of dementia, most seniors are enjoying more years of life with good cognition — a welcome trend.

Two years ago, Eileen Crimmins, AARP chair of gerontology at the University of Southern California’s Leonard Davis School of Gerontology, and colleagues documented this shift in the United States in research using data about adults 65 and older from the Health and Retirement Study.

In 2000, she found, a 65-year-old woman could expect to live 12.5 years with good cognition, four years with mild cognitive impairment and 2.6 years with dementia, on average. A decade later, in 2010, the period in good cognition had expanded to 14.1 years, with 3.9 years spent with mild cognitive impairment and 2.3 years spent with dementia.

For men, the 2010 figures are different: 12.5 years with good cognition after age 65 (compared with 10.7 in 2000); 3.7 years with mild cognitive impairment (the same as in 2000); and 1.4 years with dementia (compared with 1.8 years in 2010).

Improvements in education and nutrition, better control of hypertension and cholesterol, cognitively demanding jobs in middle age, and social engagement in later life may all contribute to this expanded period of good brain health, the study noted.

Well-being often coexists with impairment. Bardo’s research adds another dimension to this literature by addressing two questions: Do older adults with cognitive impairment feel they have a good quality of life and, if so, for how long?

His study, which has not yet been published, focuses on happiness as an important indicator of quality of life. The data come from thousands of adults 65 and older who participated in the Health and Retirement Study between 1998 and 2012 and who were asked if they were happy “all/most of the time” or “some/none of the time” during the past week.

These answers were combined with information about cognitive impairment derived from tests that examined seniors’ ability to recall words and to count backward, among other tasks.

Findings suggest that cognitive impairment is not a deterrent to happiness. Of the period that seniors spent cognitively impaired, about 5.5 years on average, they reported being happy for 4.8 years — about 85 percent of the time. Of the 12.5 years that older adults spent in good cognitive health, they reported being happy nearly 90 percent of the time.

The bottom line: “Cognitive impairment doesn’t equate with unhappiness,” Bardo said. Still, he cautioned that his study didn’t look at how happiness correlates with the extent of impairment. Certainly, people with moderate to severe dementia experience serious difficulties in their lives, as do their caregivers, he noted.

Amal Harrati, an instructor at Stanford University Medical School, said Bardo’s paper appears sound, methodologically, but wondered whether older adults with cognitive impairment can be trusted to report reliably on their happiness.

Langa of the University of Michigan said the findings “fit my general experience and sense of treating older patients in my clinical work.” In the early stages of cognitive impairment, people often start focusing on enjoying family and being in the “here-and-now” while paying less attention to “small frustrations that can get us down in our daily lives,” he wrote in an email response to questions.

“As cognitive decline worsens, I think it is more likely that one can become unhappy, possibly due to the advancing pathology that can affect specific brain regions” and behavioral issues such as hallucinations and paranoia, he added.

Jennifer Ailshire, an assistant professor of gerontology and sociology at USC’s Leonard Davis School of Gerontology, noted that happiness is often tied to an individual’s personality characteristics. This measure “doesn’t necessarily reflect how individuals with cognitive impairment are interacting with other people or their environment,” she commented.

Laura Gitlin, dean of the college of nursing and health professions at Drexel University in Philadelphia, observed that happiness is only one element of living well with cognitive impairment and dementia. Going forward, she suggested, “there is much work to do” to identify what contributes more broadly to well-being and a positive quality of life in older adults with these conditions.


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

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Will We Still Be Relevant ‘When We’re 64’?

A gnawing sense of irrelevancy and invisibility suddenly hits many aging adults, as their life roles shift from hands-on parent to empty nester or from workaholic to retiree. Self-worth and identity may suffer as that feeling that you matter starts to fade. Older adults see it in the workplace when younger colleagues seem uninterested in their feedback. Those who just retired might feel a bit unproductive.

New research suggests this perception of becoming irrelevant is very real. And that’s why some seniors are determined to stay social, remain relevant and avert the loneliness often linked with aging.

“As people get older, there are fewer and fewer opportunities to feel like they make a difference and matter,” said sociologist Markus Schafer, a faculty associate at the Institute for Life Course and Aging at the University of Toronto.

“One thing about Western societies, in general, is they’re much more a youth-centered society and don’t oftentimes give careful thought on ways older people can contribute to the lives of future generations,” Schafer said.

When people reach their 60s, opportunities to offer advice drop dramatically, said Schafer, the lead author of a study on how offering advice gives life more meaning. Overall, 1 in 5 adults in their 60s said they did not give advice to anyone in the past year, and the rate dropped to 1 in 4 people 70 and older, according to a 2016 study of more than 2,500 adults published in Social Psychology Quarterly.

That’s not all. A national survey of 1,000 adults age 64 and older conducted in August by the California-based nonprofit SCAN (a Kaiser Health News funder) found almost one-quarter of respondents agree “they aren’t important to anyone anymore.”

Having purpose and meaning forestalls loneliness, which takes an emotional and physical toll. Studies by Lisa Jaremka and other researchers have found that loneliness is associated with weaker immune systems and poorer physical health.

In one study published in 2013, Jaremka, an assistant professor of psychological and brain sciences at the University of Delaware in Newark, found that lonely people had more inflammation than those who felt more socially connected. Chronic inflammation is linked to various diseases, as well as functional decline and frailty.

“Maintaining that social engagement can give you a greater sense of purpose and give a sense of motivation that can make you behave in ways that are better for your health,” said sociologist Patricia Thomas, a faculty associate in the Center on Aging and the Life Course at Purdue University in West Lafayette, Ind., who studies social engagement among older adults.

Some older adults in Austin, Texas, are finding their purpose with a community created by Aging is Cool, an active-aging company founded just over a year ago.

“It’s about staying visible and staying engaged,” co-founder Amy Temperley said. “If you hunker down in your house and you don’t interact with the world, you will decline.”

The model she and her husband, Damien, devised offers options to keep individuals active and engaged. For $24 a month, members can attend unlimited classes and group activities, including brain and memory training; social and volunteer activities and fitness classes that stress strength, mobility and flexibility.

Rosie Cortez, 66, a grandmother of two, got involved after a heart attack spurred her to lose weight and exercise more. She also needed more stimulating company.

Rosie Cortez (Sharon Jayson for KHN)

“At one time, I did spend a lot of time with my grandkids and I loved it — but you also need adult time,” Cortez said.

“We really wanted people to have a sense of community,” Amy Temperley said. “Now they’re starting to talk about themselves as a tribe. They get together after classes. It’s evolved into not what we expected but better than we expected.”

In addition to the membership group, the company offers 40-50 classes a month at assisted living and senior living communities. It also maintains a nonprofit fund at a local community foundation, allowing it to raise money for free classes at senior housing and recreation centers in low-income neighborhoods to spur social connections.

Similar efforts are underway across the country as organizations from the National Council on Aging to local YMCAs as well as city parks and recreation centers create social and recreational programs for “active older adults.”

A program to boost well-being, strength and social activities called SilverSneakers, for adults 65 and older, is free with certain health plans. Although approaches vary, the overall aim for active older adults is to promote physical and mental agility and keep loneliness at bay.

Among these strategies, volunteering is now seen as an effective way to battle irrelevancy and loneliness. Buoyed by research that’s found health benefits for older adults who volunteer, one such study led by a Florida State University sociologist showed that volunteering appeared to have the same positive influence on health as exercise and not smoking.

“Volunteering is shown to be, in many ways, a health behavior,” said Dawn Carr, an assistant professor of sociology at Florida State in Tallahassee.

Her study, published last year in the Journals of Gerontology: Social Sciences, found that “becoming actively engaged in volunteering in later life is related to lower levels of subsequent disability.”

Retired school nurse Linda Levy, 69, has always been an active volunteer, even as a mother working full time in Pikesville, Md. But after she and her husband moved to Austin about 18 months ago to be closer to their son’s family, Levy is doing something new — working part time in retail.

“I just wanted to do something I could fit in with my schedule for family and to meet people,” she said. “It gave me a purpose. I needed to be able to say ‘I’m going to work.’”

Finding employment isn’t so easy for older adults, which is why job search strategist Toby Haberkorn co-wrote a book, out last year, titled “Best Job Search Tips for Age 60-Plus: A Practical Work Options Resource for Baby Boomers.”

Haberkorn advises job seekers to update their appearance and “show you have the energy and expertise to manage the workload.”

Haberkorn’s tips to stay relevant in the workplace are also pertinent in daily life: “Show flexibility and adaptability rather than regurgitating the past. Become reasonably social media- and technology-savvy. Familiarize yourself with what young employees have an interest in — the music, whatever current events, the apps — and be able to have a reasonable discussion. Do not say ‘Boomers have a better work ethic.’ Never, ever say ‘I’m having a senior moment’ or ‘I have a child your age.’ Don’t discuss your grandchildren. And keep your aches to yourself.”

Haberkorn also advises taking a hint from 96-year-old actress Betty White.

“She still produces good work and she has a great amount of energy,” Haberkorn said. “Her entire package promotes a youthful and optimistic attitude.”

KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.

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Living Apart Together: A New Option for Older Adults

Three years ago, William Mamel climbed a ladder in Margaret Sheroff’s apartment and fixed a malfunctioning ceiling fan. “I love that you did this,” Sheroff exclaimed as he clambered back down.

Spontaneously, Mamel drew Sheroff to him and gave her a kiss.

“I kind of surprised her.  But she was open to it,” he remembered.

Since then, Mamel, 87, and Sheroff, 74, have become a deeply committed couple. “Most nights, I’ll have dinner with Marg and many nights I stay with her overnight,” Mamel explained.

And yet, despite the romance, these North Carolina seniors live in separate houses and don’t plan to move in together or marry. Demographers call this type of relationship “living apart together” (LAT).

“It’s a new, emerging form of family, especially among older adults, that’s on the rise,” said Laura Funk, an associate professor of sociology at the University of Manitoba in Canada who’s written about living apart together.

Questions abound about these unconventional couplings. What effects will they have on older adults’ health and well-being? Will children from previous marriages accept them? What will happen if one partner becomes seriously ill and needs caregiving?

Researchers are beginning to focus on these concerns, said Susan Brown, chair of the sociology department and co-director of the National Center for Family and Marriage Research at Bowling Green State University in Ohio. “It’s really remarkable that older adults are in the vanguard of family change,” she said.

How many older adults are in LAT relationships? According to a 2005 survey by the National Social Life, Health, and Aging Project, 7 percent of individuals between 57 and 85 years old described themselves as living apart together. (Some experts contend the measure used in this survey was too broad, allowing couples who are dating to be included.)

Last month, at the annual meeting of the Population Association of America in Denver, Huijing Wu, a graduate student in sociology at Bowling Green State University, presented an analysis of nearly 7,700 Wisconsin adults age 50 and older surveyed in 2011. Married couples accounted for 71.5 percent of that group, single people accounted for 20.5 percent, and people who were “partnered but unmarried” accounted for 8 percent.

Of the partnered group, 39 percent were in LAT relationships, according to a more focused definition of this arrangement, compared with 31 percent who were dating (a less committed, shorter-term relationship) and 30 percent who were cohabiting.

Jacquelyn Benson, an assistant professor of human development and family science at the University of Missouri, is among a handful of researchers who’ve asked older adults about their experiences in LAT relationships. “Older adults really see this as a lifestyle choice, not a relationship of convenience,” she said.

Benson’s 2016 study of 25 older adults (from 60 to 88 years old) in LAT relationships found various motivations for these partnerships. Seniors wanted to have “intimate companionship” while maintaining their own homes, social circles, customary activities and finances, she discovered. Those who’d been divorced or in unhappy earlier marriages didn’t want to tie themselves down again and believed a degree of distance was preferable to day-to-day togetherness.

Also, several women who’d cared previously for sick parents or husbands wanted to avoid assuming caregiving responsibilities or the burden of running a household again.

“It’s a been-there-done-that attitude,” Brown explained. “I took care of my husband, I reared my children, and now it’s my time.”

Caregiving is a thorny issue, on multiple fronts. The only known study to look at caregiving in LAT relationships, out of the Netherlands, found that about half of partners planned to provide care, if needed — a sign of ambivalence. But when illness entered the picture, partners offered assistance nonetheless.

“People in LAT relationships forget there’s going to be this emotional entanglement and they won’t just be able to walk away,” Benson said.

Other complications can arise if adult children resent or fail to recognize their older parent’s outside-of-marriage relationship. “In some cases, when a partner wants to step in and have a say, they’ve been pushed out by family members,” Benson noted.

One older woman in her study learned that her partner had been placed in a nursing home by his family only when she couldn’t reach him at home anymore. “They didn’t include her in the conversation at all,” Benson said, “and she was pretty upset about it.”

Only a few studies have evaluated the quality of LAT relationships, which has implications for seniors’ well-being. One found that older adults in these relationships tend to be less happy and receive less support from partners than people who are married. Another, presented at last year’s Population Association of America meeting, found that the quality of LAT relationships isn’t as strong as it is for marriages.

That hasn’t been true for Luci Dannar, 90, who’s been involved with James Pastoret, 94, for almost seven years, after meeting him at a dance at a Columbia, Mo., senior center.

“The first feeling I had for Jim was sorrow because he seemed to be grieving from his wife’s death five months before,” said Dannar, whose husband and oldest daughter both passed away 19 years ago. “I thought maybe I could be helpful to this man because I’d been through those deaths.”

After getting to know Pastoret and realizing she liked him, Dannar laid down her terms. “I told him, I don’t ever want to get married and he said ‘I don’t either,’” she remembered. “And I said if you have a jealous bone in your body, don’t darken my door again. Because I lived 53 years with a jealous husband, and I never want to go through that again.”

Neither wanted to give up their apartments in a retirement community, about 300 steps from each other. “I like my independence,” said Pastoret, who taught in the school of natural resources at the University of Missouri for 33 years. “When I go home at night after supper with Lucy, I’m very happy to be by myself.”

“He comes over at 5 every evening and leaves here about 9, and then I have two hours by myself — my private time,” Dannar said. “We really like our space, our time alone, and we don’t need to be together 24 hours a day.”

Unlike other older LAT couples, they’ve talked about the future and toured assisted living centers together. “Someday, if he needs me to help him or I need him to help me, we will probably rent an apartment together, with our own bedrooms, and hire extra help,” Dannar said. “Our plan is to take care of each other until one of us is gone or we go into a nursing home.”

William Mamel is already making good on a similar promise to Margaret Sheroff, who had a mass removed from her gall bladder late last year and recently was hospitalized with complications from chemotherapy.

“With her in the hospital, I spend most of my days there,” said Mamel, who was a good friend of Sheroff’s with his wife of 37 years, Betty Ann, who passed away 2½ years ago. “Being caregivers for each other isn’t even a question.”

Their situation is complicated by Sheroff’s guardianship for her husband, John, who has advanced dementia and resides in a nursing home. “Marriage isn’t in the picture for us, but that doesn’t matter,” Sheroff said. “We’re taking one day at a time and enjoying being together.”

“Just to be able to have someone that you can wake up with in the morning and talk to, someone to have coffee with and see the smile on their face, is such a blessing,” she continued. “At this time of life, it’s really, really important to have someone in your life who’s there for you.”


KHN’s coverage of these topics is supported by
John A. Hartford Foundation
and
The SCAN Foundation

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Listless And Lonely In Puerto Rico, Some Older Storm Survivors Consider Suicide

HUMACAO, P.R. — A social worker, Lisel Vargas, recently visited Don Gregorio at his storm-damaged home in the steep hillsides of Humacao, a city on Puerto Rico’s eastern coast near where Category 4 Hurricane Maria first made landfall last September.

Gregorio, a 62-year-old former carpenter who lives alone, looked haggard. He said he had stopped taking his medication for depression more than a week earlier and hadn’t slept in four days. He was feeling anxious and nervous, he said, rubbing his bald head and fidgeting with the silver watch on his wrist. His voice monotone and barely audible, he told Vargas he had had thoughts of suicide.

Indeed, the overall suicide rate in Puerto Rico increased 29 percent in 2017, with a significant jump after Hurricane Maria, the Puerto Rico Department of Public Health reports, and that anguish is continuing.

Gregorio’s descent from heartbroken but determined storm victim to this moment of despair is a path traveled by many older people here in Puerto Rico. Psychologists and social workers, like Vargas, say elderly people are especially vulnerable when their daily routines are disrupted for long periods. Those who were once active, she said, now stay home alone.

“Before, they used to watch television, they would watch their novellas, hear the radio,” said Vargas. That predictability of TV shows and church groups or seeing friends regularly imbues life with meaning and order. “Because they feel depressed, they don’t have that desire to keep that routine of sharing in the community,” she said.

In the weeks following the late September storm, Gregorio said, he cried all day, every day.

Then, he got to work, clearing the broken branches and helping his neighbors.

But as the months wore on and his church — the organizing force of his day — remained closed, his regular church groups couldn’t meet and many of the people he saw every day moved to the United States. He went six months without electricity and missed the nightly routine of watching the local news. Now, he said, he feels listless and forlorn.

“I can’t do anything. Like about two months that I haven’t been able to do anything,” he said. “I’m not motivated.”

So he sits, much of the day, along the driveway. He reads his Bible and prepares canned food for dinner and goes to bed early.

“We have elderly people who live alone, with no power, no water and very little food,” said Adrian Gonzalez, chief operating officer at Castañer General Hospital in Castañer, a small town in the island’s central mountains. The loss of routine has created widespread anxiety among the elderly, he said. “We have two in-house psychologists and right now their [schedules are] packed.”

Dr. Angel Munoz, a clinical psychologist in Ponce, said people who care for older adults need to be trained to identify the warning signs of suicide.

“Many of these elderly people either live alone or are being taken care of by neighbors,” said Munoz. “They are not even relatives.”

Back in Humacao, the church has tried to bring back its slate of activities, but Don Gregorio said he often doesn’t feel like going. Many of the people he once spent time with left Puerto Rico after the storm.

Standing on the hillside behind his house and surveying his banana and breadfruit trees that are regrowing, Gregorio said, “I would like to leave too. I pray that God can take me out of this house because I’ve lived in the same place for 62 years.”

He recently called his sister in Jacksonville, Fla., and asked if he could move in with her. “She said, ‘No, you can’t live with me,’” he said, tearing up.

KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.

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Family Caregivers Are Getting A Break — And Extra Coaching

WASHINGTON — For today, there are no doctor’s visits. No long afternoons with nothing to do. No struggles over bathing — or not.

At the National Gallery of Art in Washington, D.C., a group of older adults — some in wheelchairs, some with Alzheimer’s — and their caregivers sit in a semicircle around a haunting portrait of a woman in white.

“Take a deep breath,” said Lorena Bradford, head of accessible programs at the National Gallery, standing before “The Repentant Magdalen” by Georges de La Tour.

“Now, let your eyes wander all over the painting. Take it all in. What do you think is going on?”

“I think she looks sad,” said Marie Fanning, 75, of Alexandria, Va., an Alzheimer’s patient.

“Yes. Yes, she looks sad,” said Bradford.

“This is such a gift,” Bill Fanning, 77, Marie’s husband and caregiver, said of the outing.

Marie Fanning (left) sits next to her husband, Bill, during the Just Us program at the National Gallery of Art in Washington, D.C., on March 5. Marie, who has Alzheimer’s disease, and Bill are regular attendees at the program. (Lynne Shallcross/KHN)

Across the country, community groups, hospitals, government agencies and nonprofits are doing more to support at least some of the estimated 42 million people who are the primary caregivers of adults and children who have disabilities, are recovering from surgeries and illnesses or are coping with Alzheimer’s and other chronic diseases. The National Gallery’s program is part of the trend focusing on the health, well-being and education of caregivers.

“We know that involvement with art improves well-being. In our own research for persons with dementia, we see a reduction in apathy. For caregivers, we see less isolation and a reduction in stress,” said Carolyn Halpin-Healy, executive director of the Arts & Minds program for caregivers and patients at the Metropolitan Museum of Art in New York.

She co-founded the program with Columbia University neurologist James Noble in 2010 at the Harlem Studio Museum in New York. The Just Us program in Washington is a spinoff of that program. Other museums in New York and Dubuque, Iowa, have similar programs.

A new bipartisan law signed by President Donald Trump in January calls for a national strategy to address the needs of caregivers, who are primarily women and provide 37 billion hours in unpaid care to relatives or close friends valued at $470 billion, according to an AARP study. The law will require the Department of Health and Human Services to set up an advisory council and develop a blueprint for government action on financial, workplace, respite care and other caregiver issues.

At the same time, 42 states have passed laws requiring hospitals and other nursing facilities to provide training for caregivers who perform medical tasks, and to record them as the “caregiver” when patients are admitted or released from hospitals or nursing facilities. In states without that law Alabama, Florida, Georgia, Idaho, South Carolina, South Dakota, Vermont and Wisconsin (Kansas’ law takes effect in July) — patients can be dismissed from the hospital without family members being told or briefed fully on what care the patient needs.

The CARE Act is “more than just a law,” said Elaine Ryan, AARP vice president of state advocacy and strategy. “It’s a change in the practice of health care.”

Research on other museum-based programs like the National Gallery’s Just Us has found that analyzing and discussing art in small groups reduces apathy among people with Alzheimer’s, and reduces stress and isolation among their caregivers. (Lynne Shallcross/KHN)

Helping The Helpers

Caregivers are almost two times more likely to have emotional and physical problems, and three times more likely to have productivity problems at work, according to a 2015 study by Johns Hopkins. The more intense the care, the greater the effects, the study said.

Dr. Eric Coleman, a gerontologist who received a MacArthur “genius award” grant in 2012, created the Care Transitions Intervention model (CTI).  The national program based at the University of Colorado in Denver trains coaches to help caregivers transition their patient to home care. The coaches are usually social workers, nurses or others hired by hospitals and other facilities to work directly with caregivers.

Coaches talk to the caregiver before patients are discharged from a hospital. Then they have a one-hour coaching session at the patient’s home, and three follow-up phone calls. Studies have shown that having transition coaches can drop readmission to hospitals by 20 to 50 percent, said Coleman.

Even if a caregiver is with the patient when doctors give instructions, the medical talk can go right over their heads, he said. “We tell people that for the next 24 to 48 hours, here are key things you need to do. Then we follow up at home,” he said.

Caregivers do more than make meals; they perform medical tasks like giving medicine, taking blood pressure, changing bandages and more. Yet they receive virtually no training, Coleman said.

“I’m a physician, and when I take care of my mom, I have an endless loop in my head,” of the to-do list, he said.

A study by AARP found that 46 percent of family caregivers perform medical/nursing tasks, 78 percent of family caregivers manage medications, and 53 percent of family caregivers serve as care coordinators. The majority said they received no training.

Caregivers are “the backbone of our health system,” said Dr. Alan Stevens, a gerontologist who trains caregivers in partnership with Baylor Scott White, the largest nonprofit hospital company in Texas, and a group of aging agencies across the state.

“If caregivers go away, we have a problem. It’s important to better understand their needs — and to help them.”

Linking Hospitals With Caregivers

Dignity Health Systems, the largest nonprofit hospital company in California, is partnering with the nonprofit Santa Barbara Foundation to provide caregiver coaches. At any given time, 1,000 caregivers are being coached, said Kathleen Sullivan, vice president of acute care services for Dignity.

“Now caregivers are identified as a partner in the health team” of the patient, she said. “They’re given a badge, they have a tote bag with information, and the hospital knows who to contact.”

The group works with nonprofit aging agencies to provide in-home coaches, she said. “When people get home from the hospital, they’re just exhausted. They don’t remember what they were told in the hospital.”

In Virginia, the Bay Area Council on Aging and a consortium of four other groups and five hospitals are training caregiver coaches using the CTI program. The key to successful coaching of caregivers is to take training to the homes of caregivers and patients, said Kathy Vesley, of the Bay Area Council on Aging in Fredericksburg, Va.

“Some of these folks are very ill and they’re managing 12-plus medications,” said Vesley. “You get into the home and they say, ‘Here’s my shopping bag of medicines.’ And it’s literally a shopping bag.”

The consortium has seen 26,000 patients and caregivers over the past 2½ years and readmission to the hospitals fell from 23.4 to 9 percent, she said. Coaches help with food, medicine and video training for how to do medical procedures and help solve issues like how to get patients to doctor’s appointments.

Out in rural southeastern Virginia, “transportation takes a whole new meaning,” she said, “when your driveway is half a mile long.”

Having Fun Helps, Too

Caregivers need a little fun and relaxation, said Jason Resendez, executive director of the Latinos Against Alzheimer’s Coalition. About 8 million Latinos are caregivers for their family members, and nearly 2 million are caring for family members with Alzheimer’s, he said.

For instance, in Los Angeles, Latino groups partnered on a play performed in Spanish about a son who is his mother’s caregiver. It was a comedy. And in Chicago, the Latino Alzheimer’s and Memory Disorders Alliance (LAMDA) holds caregiver training — and free salsa dancing classes.

“It’s not just about translation; it’s not just about handing out pamphlets,” he said.

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New Medicare Perk For Diabetes Prevention Stumbles At Rollout

Several weeks ago, Medicare launched an initiative to prevent seniors and people with serious disabilities from developing Type 2 diabetes, one of the most common and costly medical conditions in the U.S.

But the April 1 rollout of the Medicare Diabetes Prevention Program, a major new benefit that could help millions of people, is getting off to a rocky start, according to interviews with nearly a dozen experts.

In all but a few locations, experts said, Medicare’s new prevention program — a yearlong series of classes about healthy eating, physical activity and behavioral change for people at high risk of developing diabetes — isn’t up and running yet. And there’s no easy way (no phone number or website) to learn where it’s available.

A Medicare spokesman declined to indicate where the diabetes program is currently available, saying only that officials had approved three providers to date.

In a first for Medicare, community organizations such as YMCAs and senior centers will run the program, not doctors and hospitals. But many sites are struggling with Medicare’s contracting requirements and are hesitant to assume demanding administrative responsibilities, said Brenda Schmidt, acting president of the Council for Diabetes Prevention and chief executive officer of Solera Health, a company that assembles provider networks.

Medicare Advantage plans, an alternative to traditional Medicare run by private insurance companies, are now required to offer the Medicare Diabetes Prevention Program to millions of eligible members. But they aren’t doing active outreach because there are so few program sites available.

It’s “too early” to discuss how Medicare Advantage plans will handle implementation given uncertainty about the program’s accessibility, Cathryn Donaldson, director of communications for America’s Health Insurance Plans, said in an email.

Supporters urge patience. While Medicare’s embrace of diabetes prevention is “transformational,” building an infrastructure of community organizations to deliver these services “hasn’t been done before. It’s going to take time,” said Ann Albright, director of the Division of Diabetes Translation at the U.S. Centers for Disease Control and Prevention.

In a written comment, a spokesman for the Centers for Medicare & Medicaid Services said about 50 of more than 400 eligible programs are in the process of submitting applications. An online resource identifying approved programs is under development, and outreach to people with Medicare coverage is “planned for the coming months,” the statement said.

For those who want more timely information, here’s a look at the Medicare Diabetes Prevention Program and why it’s worth waiting for, even if takes awhile for a program to become available near you.

Diabetes and older adults. According to the CDC, at least 23 million people age 65 and older have “prediabetes” — elevated blood sugar levels that put them at heightened risk of developing Type 2 diabetes.

In five years, without intervention, up to one-third of this group will develop Type 2 diabetes — a leading cause of blindness, amputation and kidney disease in older adults, associated with a heightened risk of heart disease, stroke and dementia.

Program eligibility. The Medicare Diabetes Prevention Program is available to older adults and people with serious disabilities with Medicare Part B coverage who have prediabetes — and it’s free for those who qualify.

Once the program becomes available in your area, your doctor can refer you or you can sign up on your own, so long as you have a body mass index of at least 25 (or a BMI of 23, if you’re Asian), you haven’t been previously diagnosed with diabetes, and your blood sugar levels are consistent with prediabetes.

This benefit is available only once to each qualified Medicare beneficiary, so it behooves you to make sure you’re ready for the commitment it entails.

“The purpose of this should be to improve your health and quality of life, long term, not to lose vanity pounds,” said Marlayna Bollinger, executive director of San Diego’s Skinny Gene Project, which works with people at risk of developing diabetes.

Evidence of effectiveness. Medicare is tweaking the National Diabetes Prevention Program, launched by the CDC in 2010. In a much-cited 2002 study published in the New England Journal of Medicine, researchers found that participants in an early version of the CDC program were 58 percent less likely to develop diabetes than a placebo group. For people 60 and older, the reduced risk of developing diabetes was even more striking — 71 percent.

James Combs, 66, weighed 273 pounds when he enrolled in a program offered by Baptist Health in Lexington, Ky., in January 2016. Today, he weighs 210 pounds, no longer takes medication for high blood pressure, and reported “feeling fantastic.” (Combs enrolled before becoming eligible for Medicare, and his private insurance paid for the program.)

Medicare’s model. Small groups of about eight to 20 people meet weekly, for about an hour, 16 times over a six-month period, then once or twice a month for the next six months. Nutritionists, diabetes educators or other coaches use a structured CDC-approved curriculum and foster group discussion and problem-solving.

Participants check their weight at each session and keep daily logs of what they’re eating and their physical activity. The goal is to have participants lose at least 5 percent of their body weight and get 150 minutes of physical activity weekly.

“The objectives are very realistic and that increases the likelihood of success,” said Kathleen Stanley, Baptist Health’s coordinator for diabetes education and prevention.

A four-year pilot program involving nearly 8,000 seniors in 315 locations, sponsored by Medicare and coordinated by YMCA of the USA, found that savings were significant: an estimated $2,650 over the course of 15 months for each participant.

Medicare has also added a second year of monthly sessions, designed to reinforce lessons learned in the first year, for people who meet weight loss targets and regularly attend classes. (Those who don’t aren’t allowed to attend these sessions.)

Medicare will pay up to $670 per participant for the two-year period if programs meet performance standards relating to weight loss and attendance. If not, payments are lower.

For the moment, Medicare doesn’t plan to work with companies such as Omada Health Inc. or Canary Health that offer online versions of CDC’s Diabetes Prevention Program. But advocacy groups are pressing for this alternative to in-person classes.

“Virtual delivery of the diabetes prevention program would be a great option, particularly for seniors in underserved areas,” said Meghan Riley, vice president of federal government affairs for the American Diabetes Association.

Next steps. YMCA of the USA is among several organizations that plan to participate in the Medicare Diabetes Prevention program but are adopting a cautious approach.

“We’re still digging through Medicare rules and regulations and trying to make sure we understand the implications,” said Heather Hodges, the Y’s senior director of evidence-based health interventions.

She said 25 of the Y’s 840 associations were in the process of applying for Medicare certification and that as many as 50 might be offering the Medicare Diabetes Prevention Program by the end of the year. (Each Y association encompasses multiple locations.)

Albright said the CDC was asking state health departments and 10 national organizations, including the American Diabetes Association, the National Alliance for Hispanic Health and Black Women’s Health Imperative, to promote the new Medicare benefit. Once Medicare publishes a list of programs that its officials have approved, CDC will highlight this online, she said.

Angela Forfia, senior manager of prevention at the American Association of Diabetes Educators, suggested that older adults contact their local Area Agency on Aging, local health departments and senior centers in their area and express interest in the Medicare Diabetes Prevention Program.

“If Medicare recipients start to demand and ask for this, you’ll have more organizations step up and sign on to become Medicare suppliers,” she suggested.

Meanwhile, seniors might want to learn if they have prediabetes. (About 9 out of 10 people who do don’t know it.) “Take our risk test and see where you stand,” Albright advised (available at www.doihaveprediabetes.org). “It’s a good conversation starter with your health care professional, who may want to follow up by ordering a blood test.”

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Barbara Bush’s End-Of-Life Decision Stirs Debate Over ‘Comfort Care’

As she nears death at age 92, former first lady Barbara Bush’s announcement that she is seeking “comfort care” is shining a light — and stirring debate — on what it means to stop trying to fight terminal illness.

Bush, the wife of former President George H.W. Bush, has been suffering from congestive heart failure and chronic obstructive pulmonary disease, according to family spokesman Jim McGrath.

In a public statement Sunday, the family announced she has decided “not to seek additional medical treatment and will focus on comfort care.”

The announcement comes amid a national effort to define and document patients’ wishes, and consider alternatives, before they are placed on what has been described as a “conveyor belt” of costly medical interventions aimed at prolonging life.

Ellen Goodman, co-founder of the Conversation Project, which encourages families to discuss and document their end-of-life preferences, applauded the Bush family announcement.

“It sounds like this forthright, outspoken woman has made her wishes known and the family is standing by her,” Goodman said.

“It makes perfectly good sense at her age, with her failing health, that she would say at some point, ‘Life’s been good, and while you always want more, it’s enough,’” said Dr. Joanne Lynn, director of the program to improve elder care at Altarum Institute.

Lynn worked with Barbara Bush years ago, when she was a congressional spouse volunteering at the Washington Home for chronically ill patients. Bush helped with the founding of the hospice program there.

“We have so few examples in visible leadership positions” of public figures promoting palliative care, she said.

“It’s a personal decision that she didn’t have to share, but hopefully it will encourage others to think about their choices, talk about their choices, document their choices and have those choices honored,” said Nathan Kottkamp, founder and chair of National Healthcare Decisions Day.

Thousands were expected to focus on their end-of-life preferences Monday, which has been designated as National Health Care Decisions Day since 2008.

Dr. Haider Warraich, a fellow in cardiovascular medicine at Duke University Medical Center and author of the book “Modern Death,” also applauded the Bush family for putting the phrase “comfort care” into the public sphere so that other people can consider it “a viable option at the end of life.”

But he said the family statement also creates confusion about the meaning of “comfort care,” by suggesting that it entails stopping medical treatment. On twitter, palliative care experts vigorously refuted that mischaracterization.

“Comfort care” usually refers to palliative care, which focuses on managing patients’ symptoms to keep them comfortable and retain their dignity, Warraich said.

“One of the common myths about palliative care is that they are being denied medical help,” Warraich said.

For heart failure patients, he said, “comfort care” usually means opting not to use a breathing machine or CPR. But patients do continue to receive medical treatment, including morphine to ease shortness of breath, and diuretics to remove excess fluid from their lungs, he said.

Heart failure patients, he said, often receive “escalating medical treatments until days before the end of life.” Their transition to comfort care can be abrupt, “like falling off a cliff,” he said.

“By bringing this into the sphere of discussion,” Warraich said, “we can start thinking about comfort and palliation long before they are in the clutches of death.”

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‘Scary’ Lung Disease Now Afflicts More Women Than Men In U.S.

Joan Cousins was among a generation of young women who heard — and bought into the idea — that puffing on a cigarette was sophisticated, modern, even liberating. No one suspected it would make them more than equal to men in suffering a choking, life-shortening lung disease.

“Everybody smoked. It was the cool thing to do,” said Cousins, who smoked her first cigarette 67 years ago at age 16.

But one day, Cousins started coughing and could not stop — or take a deep breath. She drove to a hospital, where doctors told her she had a progressive lung disease called chronic obstructive pulmonary disease (COPD). “Not breathing was so scary … that I never had another cigarette,” Cousins said.

COPD traditionally was considered a man’s disease, but it now kills more women in the United States than men. Women account for 58 percent of the 14.7 million people in the U.S. living with the disease and 53 percent of those who die from it, according to the American Lung Association. Nearly 8 percent of women in the U.S. have reported a COPD diagnosis, compared with just under 6 percent of men.

(Story continues below.)

“It’s a huge public health problem for women that doesn’t really get enough attention,” said Dr. Meilan Han, associate professor of medicine at the University of Michigan. “This is one of the top killers of women in the country.”

Because COPD is often associated with men, women are frequently diagnosed after the disease is already advanced. Symptoms of COPD include a chronic cough, wheezing, tightening of the chest and shortness of breath. There is no cure for COPD, but its progression can be slowed. The most important thing a patient can do after a COPD diagnosis is to stop smoking.

Researchers largely blame women’s gradual adoption of smoking for the modern-day rise in COPD deaths among women. Men started smoking in large numbers in the late 1800s, coinciding with the mass production of cigarettes. In the 1920s and 1930s, tobacco companies began targeting women with ads that appealed to their sense of independence and yearning for social and sexual desirability.

Another wave of ad campaigns in the late 1960s and early 1970s induced large numbers of women, and teenage girls, to start smoking cigarettes. Brands such as Virginia Slims capitalized on the women’s liberation movement with catchy slogans, including “You’ve come a long way, baby.”

“The effects of COPD are delayed for decades and decades,” said Dr. May-Lin Wilgus, assistant clinical professor and pulmonologist at UCLA Health. “We are seeing the effects of women smoking in large numbers, especially in the 1960s and ’70s.”

Gender differences also contribute to the increased danger of COPD for women. Research shows women may be more susceptible to the toxic effects of cigarette smoke than are men. The exact reason is not certain, but researchers believe one factor is that women’s lungs are generally smaller. Estrogen can also worsen the lung damage caused by smoking.

Joan Cousins, who was diagnosed with COPD about two decades ago, holds a “story collage” made from puzzle pieces, fabric and buttons. The Union City, Calif., woman smoked for 46 years before quitting. (Courtesy of Joan Cousins)

Cousins, who stopped smoking at age 62, said she now takes an oxygen tank everywhere she goes. She half-jokingly calls it her “best friend.” At night, she sleeps hooked up to a machine that helps keep her airways open. Despite the assisted breathing, Cousins said she often feels as if someone is pushing down on her chest. The 83-year-old, who lives southeast of San Francisco, is still able to garden and create art — among her specialties is wood-burned décor — but she described the disease as “slow suffocation.”

COPD is an umbrella term used to describe progressive lung diseases including chronic bronchitis, emphysema and other conditions that make it difficult for people to push air out of their lungs. Beyond smoking, factors such as pollution and genetics can contribute to developing the disease.

Women are more likely than men to have flare-ups, or exacerbations, which can be caused by infections or exposure to pollutants. Frequent exacerbations are associated with a faster progression of the disease.

Helena Bravi of Lawrence, Kan., said she has repeatedly gone to the ER since her COPD diagnosis four years ago, even though she is on medication and oxygen. When her COPD flares up, Bravi said, the pressure builds in her chest and she gets anxious. She tries to avoid triggers such as smoke and aerosols.

“It’s really scary,” she said. “The goal is to get through the day without an exacerbation.”

COPD treatment, which can temporarily improve symptoms and lung function, may include bronchodilators to open the airways, inhalers and steroids, said Han, who is a volunteer spokeswoman for the American Lung Association. In the most severe cases, lung transplants might be needed.

Doctors and advocates say many women are unknowingly living with the disease because they lack of awareness or are reluctant to seek help.

“If they have trouble breathing when they are going up stairs, they may say ‘I’m just a little older or heavier or out of shape,’” said Stephanie Williams, director of community programs for the COPD Foundation, which recently held a webinar about the disease among women. “Women put off treatment longer and they mask their symptoms.”

Inez Shakman, 73, who lives in Ventura, Calif., and sees Dr. Wilgus, said she had problems exhaling for years, and common colds tended to settle in her chest and last longer than expected. She also found it physically straining sometimes to walk in the park. It was only about four months ago that she learned she had COPD. She’d never heard of the disease. Now, with medication, she can walk around the park without stopping or gasping for air, she said.

Medical schools have long taught about COPD with a textbook that features images of two men, and researchers have detected gender bias in doctors’ diagnoses of the disease. In one well-known study, physicians who were presented with hypothetical patients made the correct diagnosis more often for men than for women.

Caroline Gainer, a 74-year-old retired teacher who lives in Daniels, a rural town in West Virginia, told her doctor more than once about her symptoms, which included coughing every morning and regularly feeling short of breath. “He thought I had asthma,” she said. “I don’t think I ever got the message across about how bad it was.”

Finally, Gainer was diagnosed with COPD, and now she needs oxygen to get around. She gave up her 50-year smoking habit with the help of a nicotine patch, takes her medications and exercises regularly. “I do everything I am supposed to do,” Gainer said. “I can maybe not halt the progress but I can slow it down.”

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What We Know And Don’t Know About Memory Loss After Surgery

Two years ago, Dr. Daniel Cole’s 85-year-old father had heart bypass surgery. He hasn’t been quite the same since.

“He forgets things and will ask you the same thing several times,” said Cole, a professor of clinical anesthesiology at UCLA and a past president of the American Society of Anesthesiologists.

“He never got back to his cognitive baseline,” Cole continued, noting that his father was sharp as a tack before the operation. “He’s more like 80 percent.”

The old man likely has postoperative cognitive dysfunction (POCD) — a little-known condition that affects a substantial number of older adults after surgery, Cole said.

Some patients with POCD experience memory problems; others have difficulty multitasking, learning new things, following multistep procedures or setting priorities.

“There is no single presentation for POCD. Different patients are affected in different ways,” said Dr. Miles Berger, a POCD specialist and assistant professor of anesthesiology at Duke University School of Medicine.

Unlike delirium — an acute, sudden-onset disorder that affects consciousness and attention — POCD can involve subtle, difficult-to-recognize symptoms that develop days to weeks after surgery.

Most of the time, POCD is transient and patients get better in several months. But sometimes — how often hasn’t been determined — this condition lasts up to a year or longer.

Dr. Roderic Eckenhoff, vice chair for research and a professor of anesthesiology at the Perelman School of Medicine at the University of Pennsylvania, told of an email he received recently from a 69-year-old man who had read about his research.

“This guy — a very articulate man — said he was the intellectual equal of his wife before a surgery 10 years ago, a significant operation involving general anesthesia. Since then, he’s had difficulty with cognitively demanding tasks at work, such as detailed question-and-answer sessions with his colleagues,” Eckenhoff said. “He noticed these changes immediately after the surgery and claims he did not get better.”

There are many unanswered questions about POCD. How should it best be measured? Is it truly a stand-alone condition or part of a continuum of brain disorders after surgery? Can it be prevented or treated? Can it be distinguished in the long term from the deterioration in cognitive function that can accompany illness and advanced aging?

Some clarity should come in June, when a major paper outlining standard definitions for POCD is set to publish simultaneously in six scientific journals and scientists will discuss the latest developments at a two-day POCD summit, according to Eckenhoff.

Here’s what scientists currently know about POCD:

Background. POCD first began to be studied systematically about 20 years ago. But reports of patients who appeared cognitively compromised after surgery date back about 100 years, Eckenhoff said.

An influential 1955 report in The Lancet noted common complaints by family or friends after someone dear to them had surgery: “He’s become so forgetful. … She’s lost all interest in the family. … He can’t concentrate on anything. … He’s just not the same person since.”

How to recognize the condition. There is no short, simple test for POCD. Typically, a series of neuropsychological tests are administered before and after surgery — a time-consuming process. Often, tests are given one week and again three months after surgery. But the tests used and time frames differ in various studies. Studies also define POCD differently, using varying criteria to assess the kind and extent of cognitive impairment that patients experience.

How common is it? The first international study of older adults with POCD (those age 60 and older) in 1999 suggested that 25.8 percent of patients had this condition one week after a major non-cardiac surgery, such as a hip replacement, while 9.9 percent had it three months after surgery.

Two years later, a study by researchers at Duke University Medical Center, published in the New England Journal of Medicine, found that 53 percent of adults who had heart bypass surgery showed significant evidence of cognitive decline when they were discharged from the hospital; 36 percent were affected at six weeks; 24 percent, at six months; and 42 percent, five years after their operations.

Another Duke study of older adults who had knee and hip replacements found that 59 percent had cognitive dysfunction immediately after surgery; 34 percent, at three months; and 42 percent, at two years.

Other studies have produced different estimates. A current research project examining adults 55 and older who have major non-cardiac surgeries is finding that “upwards of 30 percent of patients are testing significantly worse than their baseline 3 months later,” according to its lead researcher, Dr. Stacie Deiner, vice chair for research and associate professor of anesthesiology, geriatrics and palliative care, and neurosurgery at the Icahn School of Medicine at Mount Sinai in New York City.

Vulnerabilities. The risk of experiencing POCD after surgery is enhanced in those who are older, have low levels of education or have cognitive concerns that predate surgery. Adults age 60 and older are twice as likely to develop POCD as are younger adults — a development that increases the risk of dying or having a poor quality of life after surgery.

“People who are older, with some unrecognized brain pathology, or people who have some trajectory of cognitive decline at baseline, those are the patients who you’re going to see some change in one, two or three years out,” said Charles Hugh Brown IV, assistant professor of anesthesiology and critical care medicine at Johns Hopkins Medicine.

Researchers have examined whether the type of anesthetic used during surgery or the depth of anesthesia — the degree to which a patient is put under — affects the risk of developing POCD. So far, results have been inconclusive. Also under investigation are techniques to optimize blood flow to the brain during surgery.

Mechanisms at work. What’s responsible for POCD? The drugs administered during anesthesia or the surgery itself? Currently, the evidence implicates the stress of surgery rather than the anesthesia.

“Most surgery causes peripheral inflammation,” Eckenhoff explained. “In young people, the brain remains largely isolated from that inflammation, but with older people, our blood-brain barrier becomes kind of leaky. That contributes to neuroinflammation, which activates a whole cascade of events in the brain that can accelerate the ongoing aging process.”

At Mount Sinai, Deiner has been administering two-hour-long general anesthesia to healthy seniors and evaluating its impact, in the absence of surgery. Older adults are getting cognitive tests and brain scans before and after. While findings haven’t been published, early results show “very good and rapid cognitive recovery in older adults after anesthesia,” Deiner said. The implication is that “the surgery or the medical conditions surrounding surgery” are responsible for subsequent cognitive dysfunction, she noted.

Advice. Currently, most patients are not told of the post-surgical risk of POCD during the process of informed consent. That should change, several experts advise.

“Beyond question, patients should be informed that the ‘safety step’ of not undergoing surgery is theirs to choose,” wrote Dr. Kirk Hogan, professor of anesthesiology at the University of Wisconsin-Madison School of Medicine and Public Health, in an article published earlier this year. “Each patient must determine if the proposed benefits of a procedure outweigh the foreseeable and material risks of cognitive decline after surgery.”

“Surgery is a good thing — it improves quality of life — and most older patients do really well,” said Brown of Hopkins. “Our trick is to understand who we really need to identify as high-risk and what we can do about modifiable factors.

“If you’re older and suspect you have cognitive issues, it’s important to let your family physician as well as your surgeon and anesthesiologist know that you’re concerned about this and you don’t want to get worse. That should open up a conversation about the goals of surgery, alternatives to surgery and what can be done to optimize your condition before surgery, if that’s what you want to pursue.”

“We want people to know this does happen but not be too concerned because, typically, it does go away,” said Eckenhoff. “That said, don’t try to make cognitively demanding decisions in the first 30 days after an operation. And make sure your caregivers are prepared to help with anything from paying bills and balancing the checkbook to ensuring that you’re caring for yourself adequately and communicating well with your doctor.”

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Medical Marijuana’s ‘Catch-22’: Fed Limits On Research Hinder Patients’ Relief

By the time Ann Marie Owen turned to marijuana to treat her pain, she was struggling to walk and talk. She also hallucinated.

For four years, her doctor prescribed the 61-year-old a wide range of opioids for her transverse myelitis, a debilitating disease that caused pain, muscle weakness and paralysis.

The drugs not only failed to ease her symptoms, they hooked her.

When her home state of New York legalized marijuana for the treatment of select medical ailments, Owens decided it was time to swap pills for pot. But her doctors refused to help.

“Even though medical marijuana is legal, none of my doctors were willing to talk to me about it,” she said. “They just kept telling me to take opioids.”

While 29 states have legalized marijuana to treat pain and other ailments, the growing number of Americans like Owen who use marijuana and the doctors who treat them are caught in the middle of a conflict in federal and state laws — a predicament that is only worsened by thin scientific data.

Because the federal government classifies marijuana a Schedule 1 drug — by definition a substance with no currently accepted medical use and a high potential for abuse — research on marijuana or its active ingredients is highly restricted and even discouraged in some cases.

Underscoring the federal government’s position, Health and Human Services Secretary Alex Azar recently pronounced that there was “no such thing as medical marijuana.”

Scientists say that stance prevents them from conducting the high-quality research required for FDA approval, even as some early research indicates marijuana might be a promising alterative to opioids or other medicines.

Patients and physicians, meanwhile, lack guidance when making decisions about medical treatment for an array of serious conditions.

“We have the federal government and the state governments driving a hundred miles an hour in the opposite direction when they should be coming together to obtain more scientific data,” said Dr. Orrin Devinsky, who is researching the effects of cannabidiol, an active ingredient of marijuana, on epilepsy. “It’s like saying in 1960, ‘We’re not going to the moon because no one agrees how to get there.’”

Ann Marie Owen walks with her husband, Bruce, near their home in Port Ewen, N.Y., on Feb. 19. (Allyse Pulliam for KHN)

The problem stems partly from the fact that the federal government’s restrictive marijuana research policies have not been overhauled in more than 40 years, researchers say.

Only one federal government contractor grows marijuana for federally funded research. Researchers complain the pot grown by the contractor at the University of Mississippi is inadequate for high-quality studies.

The marijuana, which comes in a micronized powder form, is less potent than the pot offered at dispensaries, researchers say. It also differs from other products offered at dispensaries, such as so-called edibles that are eaten like snacks. The difference makes it difficult to compare the real-life effects of the marijuana compounds.

Researchers also face time-consuming and costly hurdles in completing the complicated federal application process for using marijuana in long-term clinical trials.

“It’s public policy before science,” said Dr. Chinazo Cunningham, a primary care doctor who is the lead investigator on one of the few federally funded studies exploring marijuana as a treatment for pain. “The federal government’s policies really make it much more difficult.”

Cunningham, who received a five-year, $3.8 million federal grant, will not be administering marijuana directly to participants. Instead, she will follow 250 HIV-positive and HIV-negative adults with chronic pain who use opioids and have been certified to get medical marijuana from a dispensary.

“It’s a catch-22,” said Cunningham, who is with the Albert Einstein College of Medicine. “We’re going to be looking at all of these issues — age, disease, level of pain — but when we’re done, there’s the danger that people are going to say ‘Oh, it’s anecdotal’ or that it’s inherently flawed because it’s not a randomized trial.’’

Without clear answers, hospitals, doctors and patients are left to their own devices, which can result in poor treatment and needless suffering.

Hospitals and other medical facilities have to decide what to do with newly hospitalized patients who normally take medical marijuana at home.

Some have a “don’t ask, don’t tell” approach, said Devinsky, who sometimes advises his patients to use it. Others ban its use and substitute opioids or other prescriptions.

Young adults, for instance, have had to stop taking cannabidiol compounds for their epilepsy because they’re in federally funded group homes, said Devinsky, the director of NYU Langone’s Comprehensive Epilepsy Center.

“These kids end up getting seizures again,” he said. “This whole situation has created a hodgepodge of insanity.”

The Trump administration, however, has resisted policy changes.

Last year, the Drug Enforcement Administration had been gearing up to allow facilities other than the University of Mississippi to grow pot for research. But after the DEA received 26 applications from other growers, Attorney General Jeff Sessions halted the initiative.

The Department of Veterans Affairs also recently announced it would not fund studies of using marijuana compounds to treat ailments such as pain.

The DEA and HHS have cited concerns about medical supervision, addiction and a lack of “well-controlled studies proving efficacy.”

Patients, meanwhile, forge ahead.

Ann Marie Owen prepares to take oral medical marijuana at home. The retired university administrative assistant credits marijuana for weaning her off opioids. (Allyse Pulliam for KHN)

While experts say they don’t know exactly how many older Americans rely on marijuana for medicinal purposes, the number of Americans 65 and older who say they are using the drug skyrocketed 250 percent from 2006 to 2013.

Some patients turn to friends, patient advocacy groups or online support groups for information.

Owen, for one, kept searching for a doctor and eventually found a neurologist willing to certify her to use marijuana and advise her on what to take.

“It’s saved my life,” said the retired university administrative assistant who credited marijuana for weaning her off opioids. “It not only helps my pain, but I can think, walk and talk again.”

Mary Jo, a Minnesotan, was afraid of being identified as a medical marijuana user, even though she now helps friends navigate the process and it’s legal in her home state.

“There’s still a stigma,” said Mary Jo, who found it effective for treating her pain from a nerve condition. “Nobody helps you figure it out, so you kind of play around with it on your own.”

Still, doctors and scientists worry about the implications of such experimentation.

In a sweeping report last year, the National Academies of Sciences, Engineering and Medicine called on the federal government to support better research, decrying the “lack of definitive evidence on using medical marijuana.”

The national academies’ committee reviewed more than 10,000 scientific abstracts related to the topic. It made 100 conclusions based on its review, including finding evidence that marijuana relieves pain and chemotherapy-induced nausea. But it found “inadequate information” to support or refute effects on Parkinson’s disease.

Yet those who find that medical marijuana helps them can become fierce advocates no matter what their doctors say.

Caryl Barrett, a 54-year-old who lives in Georgia, said she decided to travel out of state to Colorado to treat her pain from her transverse myelitis and the autoimmune disease neurosarcoidosis.

“I realized it worked and I decided to bring it back with me,” she said. “I broke federal law.”

Georgia, meanwhile, permitted limited medicinal use of marijuana but did not set up dispensaries. As a result, patients resort to ordering it online or driving to another state to get it.

The conflict in the law makes her uneasy. But Barrett, who had been on opioids for a decade, said she feels so strongly about it working that “if someone wants to arrest me, bring it on.”

Others experience mixed results.

Melodie Beckham, who had metastatic lung cancer, tried medical marijuana for 13 days in a clinical trial at Connecticut Hospice before deciding to quit.

Ann Marie Owen prepares to take oral medical marijuana at home in Port Ewen, N.Y., on Feb. 19, 2018. The retired university administrative assistant credits marijuana for weaning her off opioids. (Allyse Pulliam for KHN)

“She was hopeful that it would help her relax and just kind of enjoy those days,” said her daughter, Laura Beckham.

Instead, it seemed to make her mother, who died in July at age 69, “a little more agitated or more paranoid.”

The marijuana “didn’t seem effective,” nor did it keep her mother from hitting her pain pump to get extra doses of an opioid, her daughter said.

The researchers running the trial at Connecticut Hospice spent two years getting necessary approvals from the Food and Drug Administration, the National Institute on Drug Abuse (NIDA) and the DEA.

Started in May, the trial has enrolled only seven of the 66 patients it plans to sign up because many patients were too sick, too close to death or simply couldn’t swallow the pills. So far, the trial has shown “mixed results,” said James Prota, director of pharmacy for the hospice.

Researchers point out they are still exploring the basics when it comes to marijuana’s effects on older adults or the terminally ill.

“We just have no data on how many older adults are using medical marijuana, what they are using it for and most importantly what are the outcomes,” said Brian Kaskie, a professor at the University of Iowa’s College of Public Health. “It’s all anecdotal.”

Kaskie, who specializes in public policy and the aging, received grants from the state of Colorado and the Chicago-based Retirement Research Foundation to survey the use of medical marijuana by older Americans.

In many quarters, there’s a growing appetite for solid information, he said.

“When I first started this, my colleagues joked we were going to find all the aging hippies who listen to the Grateful Dead,” said Kaskie, who has been studying medicinal marijuana for years. “Now, they’re starting to realize this is a legitimate area of research.”

Twenty researchers received marijuana from the federal program last year, which was more than any previous year since 2010, according to NIDA statistics.

In a recent funding announcement, the National Institutes of Health requested grant applications to study the effects of marijuana and other drugs on older adults and pain.

NIH, however, continues to funnel much of its funding into studying the adverse effects of marijuana, researchers said.

Although NIH acknowledged in one of the announcements that some research supports “possible benefits” of marijuana, it emphasized “there have not been adequate large controlled trials to support these claims.”

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