GBO NEWS: NPR Anchor Calls for Caregivers Day; NPF Names 20 ‘Retirement’ Journalism Fellows; New Gen-Beat Websites; & MORE
GENERATIONS BEAT ONLINE NEWS
E-News of the Journalists Network on Generations
May 11, 2016 — Volume 16, Number 7
Editor’s Note: GBO News, e-news of the Journalists Network on Generation publishes alerts for journalists, producers and authors covering generational issues. Send your news of important stories or books (by you and others), fellowships, awards or pertinent kvetches to GBO News Editor Paul Kleyman. You can subscribe to GBONews.org at no charge simply by sending a request to Paul with your name, address, phone number and editorial affiliation or note that you freelance. You’ll receive the table of contents as e-mail, just click through to the full issue at www.gbonews.org.
IN THIS ISSUE: Your Very Own New Normal.
1. HEALTH CARE REFORM SCHOOL: *** NPR’s Michelle Martin’s Mother’s Day Commentary a National Caregivers Day; *** Atlas of Caregiving Pilot Study Report Delves Into What Entails Caregiving; *** Older Americans Act Finally Reauthorized (Now Congress Needs to Fund It).
2. THE STORYBOARD: *** “Fraying at the Edges: A Life-Changing Diagnosis,” by R.N. Kleinfield’s runs 20,400 words in the New York Times; *** “Latino Elders Increasingly Alone and Isolated in Chicago,” 2-part series by Marcela Cartagena, in Chicago’s La Raza; *** “Caregivers Face Crushing Demands, But Help Isn’t Far Away,” by Hanah Cho, Dallas Morning News; *** “Old and Homeless: Aging Hard and Fast on Spokane’s Streets,” by Tyler Tjomsland, Spokane Spokesman-Review/New America Media; *** “With Aging and Illness, Some LGBT People Opt for the Closet,” by Ellen Rand, New America Media; *** “Most Doctors Unsure How To Discuss End-of-Life Care, Survey Says,” by Barbara Feder Ostrov, Kaiser Health News;
3. EYES ON THE PRIZE: *** The National Press Foundation Taps 20 Journalists for Retirement Fellowships; *** Excellence in Reporting on Elder Abuse Award for Sacramento Bee’s Marjie Lundstrom and GBONews & New America Media Editor Paul Kleyman.
4. THE AGING NET: *** Pittsburgh Post-Gazette Launches New “Aging Edge” News Blog; *** The Silver Century Foundation Enhances News Website.
1. HEALTH CARE REFORM SCHOOL
*** NPR News Anchor Michelle Martin’s Mother’s Day commentary on All Things Considered (May 8) was a refreshing surprise: “Perhaps It’s Time To Celebrate A Day In Honor Of Caregivers.” After acknowledging, “We love mom. Or, at least, we like the idea of mom,” she eventually got to the point of her well-considered Sunday sermon. Our aging-boomer world.
“There’s a new day coming,” Martin said. “Just as President John F. Kennedy famously said we are all Berliners, we are all about to become mom . . . . I say it because our country is getting older. The number of Americans aged 65 and older is projected to more than double by the year 2060, according to the Population Reference Bureau. Those aged 65 will be nearly a quarter of the population by then, compared to 15 percent now.”
Observing that more older adults are divorced or otherwise living alone and that more will live with dementia, Martin dryly underlined, “That means someone will have to care for all these people.”
As for adult children, she continued, “It is perhaps unkind but common for people to default to the position that if you can’t take care of them by yourself, with little help from anybody else, then you shouldn’t have them. That logic doesn’t work with elderly, frail and possibly sick parents. What is the critique then? That your parents didn’t earn enough or save enough or have more kids to take care of them? That might be true, but how about another possibility: That we might finally begin to come to grips with this country’s caregiving crisis.”
Martin went on, “Caregiving is the rare profession that is both essential to everyone, at some point, but also low-paid and poorly trained and still wildly unaffordable to most people who need it. Something has got to give. Shall we celebrate Caregiver’s Day, then? Not catchy, I know. But get the cards and flowers ready. That’s where we’re headed.”
*** That brings this GBONews to the new Atlas of Caregiving Pilot Study Report, perhaps taking off aspirationally from the idea of the Dartmouth Atlas of medical data. The aim of the new atlas: “new methods to study family caregiving, to understand day-to-day care in detail.” Developed by the San Francisco-based Family Caregiver Alliance [www.caregiver.org] (FCA) with funding from the Robert Wood Johnson Foundation, the report–noting the paucity of research revealing exactly what family caregiving entails–“set out to answer one fundamental question: Can this technological revolution be used to understand the crisis of family caregiving, one of the less explored major issues associated with modern living?”
The authors add, “ If care is thought of as an iceberg, professional healthcare might be considered to be the tip. Family caregiving is the huge, unseen portion underwater.”
“I’ve been flabbergasted by the fact that there is not an accurate number of caregivers in the United States,” said report coauthor, Rajiv Mehta, founder of Bhageera, a Silicon Valley-based health-technology consulting firm. A member of FCA’s nonprofit board, Mehta cited studies showing there are estimates ranging from 44 million Americans to one claiming 39 percent of the U.S. population, or over 100 million people.
The U.S., he said, is in an economy that thrives on data in every sector. As the study comments, “Shopping habits, traffic patterns, environmental changes, even the variation in grape growth in a vineyard, are far better understood today.”
Mehta, along with study coauthor Dawn Nafus, a senior research anthropologist at Intel (they’ve had a had an anthropology unit for years trying to understand real-life uses of tech in product development), designed a pilot project with 14 families in the San Francisco area. The aim was to understand how to make caregiving easier and more effective.
Participants from a mother caring for a teenage son with type 1 diabetes to those doing eldercare, were interviewed and kept a log for 24-30 hours on their activity and stress levels. They wore body sensors and cameras, and allowed motion and other environmental sensors around their homes.
Each of the 14 families are detailed in the 171-page report with descriptions of their situations (including their need for and often lack of community services). The report also recommends that employers offer caregivers greater workplace flexibility and makes specific recommendations for further research.
Surprising Findings
Those involved were often surprised to learn the extent of their caregiving activities. Further, the research exposed flaws in the current understand of family caregiving. “There are almost always more people involved than ‘a caregiver, a care recipient, and doctors,’ sometimes a lot of people.”
The research team concluded, “Defining the caregiving experience solely by disease, condition, or age can be myopic, missing major features of what caregivers do. Caregiving is always about more than just medical tasks.
Mehta told GBONews that the research effort intends to encourage greater data collection in many quarters and identify better ways to define and measure caregiving. For their next research step, he said they would like to examine 50 families over two or three months.
As groups like FCA try to connect the caregiving dots on research and practice, many entries in this issue of GBONews represent the continuing stream of dots in journalism. What it will take to connect their policy implications at the political level is a question this editor has been posing for over three decades.
The United States of America remains the only advanced country not, at least to accept the principle of integrating long-term care into its overall health care system. As long as LTC remains a political afterthought–a poverty program and damaged LTC insurance market–the story of aging in America needs to be told and told again, perhaps until a critical mass of politicians finds the caregiving crisis in their own homes. A national Caregiver’s Day is a great idea, and GBONews applauds Michelle Martin for suggesting it. But it should not be only on one Sunday a year when politicians hear the cry, “It’s your mother, stupid!”
*** “The Older Americans Act Finally Clears Congress,” is the header on the story in the PBS website Next Avenue. But the story, which is very informative, is not by a journalist. The author is longtime Washington advocate Bob Blancato. In fact, a Google search turns up almost no reporting on AoA’s passage. (Maybe they should have called it the Older Trump Act.) Never mind that this chronically underfunded law–first passed in 1965 to represent U.S. policy for our aging nation–will affect programs and services for 11 million individuals ages 60-plus and their families. The president signed the bill on April 19.
Blancato, who’s piece outlines what’s in the bill, noted that the revised statute is now authorized for three years: “Passage comes almost 10 years since the Act was last reauthorized, a delay which has been a source of great consternation to older adults and their advocates.”
Writing in HuffPost 50 (May 3), another activist, Robert Roach, Jr., explained, “OAA’s support for Meals on Wheels, family caregivers and transportation will help families keep their loved ones out of nursing homes, thereby helping avoid Medicaid costs. Decisions on how to meet the needs of aging family members are always difficult, but the OAA will give some of the tools necessary to make the process easier. Many of these programs include preventive measures that save taxpayers money in the long run. Other provisions are aimed at reducing scams and elder abuse by helping states train law enforcement officers, health care providers, and other professionals to recognize and respond to elder abuse.”
The final version of the bill approved increases funding by six percent over the next three years. But, wait, there’s more to know. You see, ongoing legislation of this kind is often passed with a sunset date to ensure that laws involving complex concerns are reconsidered and possibly updated over the years. When that doesn’t happen on an important bill affecting lots of voters, Congress simply passes a continuing resolution. Those are generally year-to-year, but most remain at the same level with no changes. What’s happened to AoA is that it’s funding has been as stagnant as the average working stiff’s wages and has fallen with the rate of inflation.
Oh, yes, remember your “how a bill becomes a law” diagrams in school? Getting passed is one thing — now Congress actually has to appropriate funding, which can be from zero up to the amount authorized for each part of the statute.
James Appleby, executive director and CEO of the nonpartisan Gerontological Society of America called for full funding in a GSA statement: “Without the supports and services provided by the OAA, many people could lose their independence. The human and financial cost of that would be enormous.”
For example, said the GSA release, “two-thirds of those who receive home-delivered meals rely on this food for half or more of their daily intake; 58 percent of those who receive meals in congregate sites rely on this food for half or more of their daily intake.”
Appleby stressed, “The OAA is aimed at adults age 60 and older, a demographic segment that has increased some 30 percent over the past decade. Yet congressional appropriations have changed little in the same timeframe.”
2. THE STORYBOARD
*** “Fraying at the Edges: A Life-Changing Diagnosis” — weighing in at 20,400 words, is R.N. Kleinfield’s New York Times (May 1) treatise on the unsettling experience of Alzheimer’s disease in its early stages. Presented in a 12-page special section with great photos, Kleinfield shows the unfolding story of Geri Taylor, starting with her moment of non-recognition–of herself: “She gazed saucer-eyed at her image, thinking: Oh, is this what I look like? No, that’s not me. Who’s that in my mirror?”
The story is also available in Spanish.
In a separate piece explaining how he developed the article, Kleinfield explained, “The disease crouches everywhere, but I didn’t have much interest in writing about it. After all, Alzheimer’s was famous. Everyone knew its brute outlines, knew how drip by drip it transformed someone into someone else.” Then his mother was diagnosed. Later, he worked with his editor Michael Luo to come up with an under-covered angle: “The most important stage of Alzheimer’s, however, is the initial one — the period after diagnosis when people still largely control their lives . . . . I thought it would be illuminating to write a story that, in its entirety, examined the particularities of that introductory stretch, when you meet the disease, decide how to accept it and learn how to work with its evilness. Perhaps it would suggest a road map for others.”
The editorial package was designed and produced by Danny DeBelius with photos by Michael Kirby Smith and video by Michael Kirby Smith, Justin Yurkanin, Margaret Cheatham Williams and Alexandra Garcia.
The response, of course, was substantial and should point reporters elsewhere toward other story angles in practice and public policy calling for coverage. Among selected letters to the editor, for example, a University of Chicago neurologists observed, “The entire budget of the two agencies at the National Institutes of Health responsible for Alzheimer’s research is only about $3 billion a year, less than 10 percent of the aggregate N.I.H. budget and a tiny fraction of the $236 billion that Alzheimer’s costs our country each year.”
Also, a University of California, Davis, physician noted, “Alzheimer’s disease is only one of a number of causes of dementia. Most dementia is not pure Alzheimer’s disease but a combination of vascular disease and Alzheimer’s.”
And an administrator at USC’s Schaeffer Center for Health Policy and Economics stated that health economists there “estimate that the national costs of dealing with Alzheimer’s will rise to $1.5 trillion a year by 2050. We do not need to hit a home run to improve lives and our fiscal outlook. A new therapy that can delay onset for even five years would reduce the number of Americans with the disease in 2050 by 41 percent or more, probably rescuing Medicare and Medicaid in the process.”
*** “Latino Elders Increasingly Alone and Isolated in Chicago” is Part 1 of Marcela Cartagena’s story package for Chicago’s La Raza newspaper and New America Media (May 2). One of this year’s Journalists in Aging Fellows, NAM’s collaboration with the Gerontological Society of America, Cartagena focused on the aging of Chicago. Like the U.S. overall, it is leaving many elders alone and often socially isolated. Researchers say that’s especially difficult for older Latinos. NAM adapted her original three-piece package in Spanish to a two-part series using her English translation. (NAM also posted the original three stories in Spanish.) All NAM version also linked the article son the La Raza site.
Part 2 ran with the English headline, “Chicago Senior Services Help Latino Elders Face Isolation, Depression” (May 4). It tells the stories of two Latina elders in Chicago living alone with some help from senior services. Her fellowship was supported by a grant from the Silver Century Foundation.
Here are the links to the series on NAM en Español: Parte 1, “La soledad, cara amarga del envejecimiento”; Parte 2, “Vive aislado puede ser dañino para la salud: estudios”; Parte 3, “Latinos de la tercera edad en Chicago enfrentan la soledad.”
*** “Caregivers Face Crushing Demands, But Help Isn’t Far Away,” by Hanah Cho, Dallas Morning News (May 10): “For the past five years, Jan Draper has rarely left the side of her husband, Gary, who has Alzheimer’s disease. The full-time caregiving has taken a physical and emotional toll.”
*** “Old and Homeless: Aging Hard and Fast on Spokane’s Streets,” by Tyler Tjomsland, Spokane Spokesman-Review/New America Media (April 27): Grow old along the streets–the worst is yet to be. Homeless outreach workers are witnessing the accelerated aging of Spokane’s poorest seniors.
*** “With Aging and Illness, Some LGBT People Opt for the Closet,” by Ellen Rand, New America Media (Apr 29): Anti-LGBT bias in senior care homes and health facilities is forcing many back into the closet after decades to hide their sexual orientation.
*** “Most Doctors Unsure How To Discuss End-of-Life Care, Survey Says,”by Barbara Feder Ostrov, Kaiser Health News (April 14) Medicare now reimburses doctors $86 to discuss end-of-life care in an office visit that covers topics such as hospice, living wills and do-not-resuscitate orders. Known as “advance care planning,” the conversations can also be held in a hospital.
Payment for such discussions was initially included in the Affordable Care Act, but removed because of the controversy over so-called “death panels.” Medicare ultimately changed its policy, independently of Obamacare, to allow reimbursement for the end-of-life planning sessions.
The poll of 736 primary care doctors and specialists, including 202 in California, examined their views on advance care planning and end-of-life conversations with patients. Among the findings:
- While 75 percent of doctors said Medicare reimbursement makes it more likely they’d have advance care planning discussions, only about 14 percent said they had actually billed Medicare for those visits.
- Three quarters also believe it’s their responsibility to initiate end-of-life conversations.
- Fewer than one-third reported any formal training on end-of-life discussions with patients and their families.
- More than half said they had not discussed end-of-life care with their own physicians.
The survey was commissioned by The John A. Hartford Foundation, the California Health Care Foundation and Cambia Health Foundation. (California Healthline is an editorially independent publication of the California Health Care Foundation.)
3. EYES ON THE PRIZE
*** The National Press Foundation has tapped 20 journalists for in-depth training on issues in aging and retirement. They will head to Washington, D.C., on the foundation’s roll of dimes, June 12-15, at NPF’s Media Training Center there. Under this year’s theme, “Understanding Generational Changes,” the reporters will hear from experts on Social Security, Medicare, the public safety net, faltering pensions, the impact of dementia, and other health concerns. As has been true for many years, funding for the all-expenses-paid fellowship was provided by Prudential Financial.
Selected to attend this year are: Eileen Ambrose, AARP The Magazine, and AARP Bulletin, Washington; Sandra Block, Kiplinger’s Personal Finance, also in D.C.; Dan Caplinger, Motley Fool’, Williamstown, Mass.; Deborah Martinez, KSFR 101.1 FM, Santa Fe, N.M., Public Radio; Jill Cornfield, Bankrate.com, New York City; Jill Cowan, Dallas Morning News; Pat Ferrier, The Coloradoan, Fort Collins, Colo.; Frank Gluck, The News-Press, Fort Myers, Fla.; Bryan Horwath, Wichita Eagle, Kansas; Caitlin Kelly, freelance, New York Times and others, New York; Rory Linnane, USA Today Network, Madison, Wisc.; Jonnelle Marte, Washington Post; Kyle Munson, Des Moines (Iowa) Register; Millicent Ozdaglar, KCRA-TV 3 (NBC affiliate), Sacramento, Calif.; Encarnacion Pyle, Columbus (Ohio) Dispatch; Gary Rotstein, Pittsburgh Post-Gazette; Anne Saker, Cincinnati Enquirer; Troy Turner,Opelika-Auburn [Alabama) News; Tara Lynn Wagner, NY1/ Time Warner Cable News, New York City; and Amy Zipkin freelance, New York Times, Wall Street Journal, Hartford Courant, others, Greater New York area.
*** The Excellence in Reporting on Elder Abuse Award will be presented next month to Sacramento Bee investigative reporter Marjie Lundstrom and GBONews and New America Media editor Paul Kleyman. Bestowing the honors are the California Elder Justice Coalition and Institute on Aging, San Francisco Department of Aging, and Adults Services and the Institute on Aging.
Lundstrom also just received the California Newspaper Publishers Association award for the best investigative journalism of 2015 with Sac Bee colleague Phillip Reese for their continuing work on nursing home abuses. In 1991 she shared a Pulitzer Prize for journalism with Rochelle Sharp for their Gannet News series on child abuse-related deaths. Interesting to see her and Sharp, a former Journalists on Aging Fellow, find their investigative way up the age scale.
Most recently, Lundstrom and Reese published “Shifting population in California nursing homes creates ‘dangerous mix,’” (April 3): “Where once skilled nursing facilities were universally thought of as ‘rest homes’ for the frail and elderly, a growing proportion of California nursing home residents are younger, more able-bodied patients, many diagnosed with mental illness. . . . ‘The homes that we have known as havens for the frail elderly, as you can see, are no longer safe havens,’ said Tippy Irwin, executive director of San Mateo County’s ombudsman services.”
Their diligent digging also yielded an April 12 Sac Bee editorial, headlined, “Profit motive and mental health care in California.”
Presentation of the Excellence in Reporting on Elder Abuse Award will be on June 8, which is World Elder Abuse Awareness Day. As it happens, this editor will be in New York then for the Age Boom Academy fellowship seminar sponsored by Columbia University’s School of Journalism and Robert N. Butler Center on Aging. More about that with a complete list of this year’s fellows in the next GBONews.
4. THE AGING NET
*** The Aging Edge is the Pittsburgh Post-Gazette’s new blog section, launched April 11, and aimed at providing readers original and archived stories, an ongoing resource guide and a website/blog on a wide range of topics in aging.
Rotstein, a staff reporter and editor, who has long wedged generations-beat coverage into his editorial chores, e-mailed GBONews that he proposed the website about a year ago. That was after the New York Times decided to shut down its fine “New Old Age” blog, shifting the standing head to biweekly articles by Paula Span in the Tuesday “Science Times” section. He added, “I don’t think anyone else is doing anything similar” in daily media. (Please drop a note to GBONews’ editor at pkleyman@newamericamedia.org if you know of others.)
Besides the paper’s local coverage, the site includes wire stories and has a local “Where to Start, Where to Go” guide section with information on subjects, such as aging at home, staying healthy, long-term housing options and understanding dementia.
On pitching the idea, Rotstein said, the Post-Gazette’s editors “quickly embraced it.” Still it took these many moons to fit the myriad tasks involved into his demanding schedule — with a shrinking news staff – and the time of other staffers, such as the paper’s IT team. Rotstein added, “The good news is nobody stepped in and said let’s put a stop to this foolishness about adding more content about old people. Though I did have calls from older newspaper readers today complaining that we were adding content that was only available to those with computers, when they themselves don’t have computers and don’t know how to use them. You just can’t win.”
Well, as a newsprint lover, GBO’s editor also hopes the paper keeps up it’s “Aging Edge” along the shores of the Allegheny long enough to attract Pittsburgh’s share of the 10,000 boomers turning 65 every day around the U.S. of A., laptops, smart phones and all. Old Man River just keeps newsing along. Those interested can reach Rotstein at: grotstein@post-gazette.com; 412-263-1255.
*** The Silver Century Foundation (SCF) website posts (and commissions) in-depth features “that look at aging as a lifelong process,” said the foundation’s president and founder Kay Klotzburger, Ph.D. She added in an e-mail, “Our bloggers—who range in age from 30 to 80—offer personal perspectives on what aging means to them and how we, as individuals and as a society, can make the most of later life.” The site includes quizzes and lists of recommended books and films on aging, as well as “a carefully curated selection of resources to help people plan for the very long lives they are likely to lead.” Besides cross-posting many articles from other sources, they also make their original content available to others sites usually with a simple request for permission. Contact SCF at inquiries@silvercentury.org; or phone (609) 683-4850.
One strong example of the site’s quality content is the recent article, “Why Older People Don’t Register as Organ Donors—and Why They’re Sorely Needed,” by Leigh Ann Hubbard. The 2,200-word news feature explains that in the early years following the first successful transplant in 1954 (a kidney procedure) “organs were generally only transplanted from younger people.” It was in part because of pioneering transplant surgeon George M. Abouna’s work that doctors learned that organs from people 60 or older could also work well.
Hubbard continues, “Nowadays, organs from older people are transplanted all the time, usually to people who are of a somewhat similar age. Still, members of older generations are less likely than those of younger ones to register to be organ donors.”
She cites a 2012 Gallup survey showing that barely more than half of those 66 or older have included organ transplantation permission on their driver’s licenses, compared with two-thirds of those ages 18-34. Even though 90 percent of older people favor organ donation, me don’t sign on believing that their age, chronic illness, disease or medication they take preclude their organs to be viable to transplantation. “Experts say they’re often wrong—and it’s costing lives,” writes Hubbard.
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