Attention to complex emotions around caregiving can add depth to stories
If we’re lucky as we cross the threshold into old age, people who we love – our spouses, our children, our nieces and nephews, friends and neighbors – start becoming our caregivers.
When we stop driving, they take us to the doctor. When we need a prescription, they go to the pharmacy and pick it up. When we can’t make sense of medical bills, they come by and plow through the paperwork. And when we stop getting out much, they visit us, talk to us, sit by our side.
It’s an intimate act, this decision to care for someone who is sick, old, or frail – to accompany them on their journey into life’s last stage.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
Much has been written about the burdens of caregiving: the juggle for families raising young children and tending to aging parents, the demands on time and finances, the emotional roller coaster as relationships are redefined, the stress of confronting illness, debility and impending death. As health reporters, this is the side of caregiving we usually examine.
Less discussed and far less well appreciated are the benefits of sharing this vulnerable time of life with someone.
There are few experiences in life that similarly call upon our humanity and our empathy. If cuddling an infant is an act of joy, then attending to an older person who’s weakening, physically and perhaps psychologically, is an act of commitment, an assertion of ties that bind us and refuse to be broken. Though you don’t hear about it, people who become caregivers often end up feeling they get as much (appreciation, satisfaction, a sense of their own decency) as they give.
What better way to convey this than through photography, that medium that says what words alone can’t capture?
Take a look at this set of caregiving photographs recently published by NPR and think about what the faces captured here express. I see dignity and acceptance, patience, warmth, boredom, independence, distance, closeness, and resignation – emotions that people might not admit feeling if they were asked directly. The photos were taken by Annabel Clark, daughter of the actress Lynn Redgrave. NPR gives some background on how Clark got interested in the subject here.
What’s the message for health reporters? When you’re writing or producing a piece about caregiving, pay close attention to gestures, expressions and actions that hint at what people are experiencing but not willing or able to articulate. Listen for the silences, when you get the feeling that words are falling away and something important lies beneath. If you pick up on these clues, you may be able to take an interview to the next level and write a story with details that will capture your readers’ hearts.
Look for a tip sheet on caregiving in the Aging Core Topic section of AHCJ’s website this fall. It will be full of good information about data, reports and sources who can walk you through this topic. But the people and families who give caregiving depth and complexity, those you’ll need to find for yourselves.
Update: I wrote this before the New York Times‘ story on Sunday, May 6, “When Illness Makes a Spouse a Stranger,” about frontotemporal dementia. Denise Grady, the article’s author, does a brilliant job of portraying both sides of the caregiving story: the depths of love and commitment that Ruth French feels for her afflicted husband, Michael, and the depths of despair that she undergoes as his personality changes and his care becomes demanding beyond all measure. Look at how the tension in the story is complemented by the photograph that accompanies it of Ruth and Michael spooning in bed. And watch the video, so aptly titled “in love and loss,” for more heart-rending images that add extraordinary depth and emotion to this piece.
Seniors missing out on important wellness exams
As health care reporters, we come across this truth time and again: insurance coverage doesn’t guarantee high quality medical care.
The latest evidence comes from a survey of 1,028 seniors (age 65 and older) by The John A. Hartford Foundation, whose mission is improving the health of older adults. (Editor’s note: The John A. Hartford Foundation is one of the supporters of AHCJ’s core curriculum on Aging.)
It found that a measly 7 percent of older adults surveyed received seven highly recommended services, including a yearly review of all their medications, screening for depression or other mood disorders, a history and assessment of their risk of falling, evaluation of their ability to perform daily activities of living and care for themselves and referral to resources in the community.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
All of these services are covered by Medicare through the program’s new annual wellness visit – a benefit to all beneficiaries on traditional Medicare as of January 2012 – and all are endorsed by geriatric experts. Yet 52 percent of older adults who participated in the Hartford survey said they had received none or one of the interventions.
“Healthcare isn’t very well adapted to the special needs of older people,” said Christopher Langston, program director at the Hartford Foundation, introducing the findings at a press conference last week. Most physicians have little if any training in geriatrics and simply apply knowledge of young adults or middle aged adults to seniors, others said.
That’s misguided, since older adults’ changing bodies – different sleep patterns, alterations in metabolism, changes in muscle strength and nutritional requirements, and more – require special attention and special interventions.
Yet, with a few exceptions, medical schools don’t incorporate geriatric training into their curriculums. And Medicare doesn’t adequately reimburse doctors who treat large numbers of older patients, who tend to require more time and attention because of their complex needs and, often, multiple illnesses.
Rosemary Leipzig, M.D., professor of geriatrics at Mount Sinai School of Medicine in New York City, said it was “really concerning” that one-third of older people surveyed said doctors hadn’t reviewed all their prescriptions and over-the-counter medications, vitamins and supplements over the past year.
Thirty percent of seniors who participated in the survey reported taking five or more prescription medications; another 33 percent were taking up to four medications.
Well-documented harms occur when older adults swallow too many pills with possible adverse side effects, but these can be prevented up to 40 percent of the time with proper oversight, Leipzig said. The American Geriatrics Society recently published an updated list of medications that can be dangerous for seniors. (The society’s standards for potentially inappropriate medication use in older adults are known as the Beers criteria.)
Another troubling gap in care arises from doctors’ and nurses’ failure to ask older patients whether they have fallen recently or advise them about how to minimize the risk of falls, as I wrote in a blog post about the Hartford survey. Dan Kadlec also highlighted the issue in his blog post for Time Moneyland, quoting the Hartford Foundation:
“Falls cause more injury and injury-related death in older people than any other event and cause 90% of all hip fractures, which greatly increase odds of nursing home placement. … Evidence has shown that older people can cut their risk of falling by about 30% by addressing key risk factors.”
For health care reporters, I think the take-home message is that doctors who care for older adults in the community are not doing all they could for this population. There are several reasons why this is so. A lack of knowledge about Medicare, inadequate training in geriatric care, harried practices and reimbursement pressures are high on the list.
Also, for their part, older adults don’t really know what kind of care they should be getting, what to ask for from their doctors, and what benefits are available to them under Medicare. (Fifty-four percent of seniors polled by the Lake Research Partners for the Hartford Foundation said they’d never heard of Medicare’s annual wellness visit.)
This seems a ripe area for coverage by reporters committed to educating older adults about the components of high quality care and Medicare.
Reporters must listen to learn, accurately report about the experience of aging
How do people feel about growing older?
You might think this is a much-examined subject in the media. It’s not.
While the angst and energy of youth appears endlessly fascinating – what are they wearing and drinking? Which apps do they use? What movies or music are most appealing? – the interior life, tastes and thoughts of older adults are largely ignored.
Public opinion research on the topic is surprisingly scarce. The most authoritative study I know of was published almost three years ago by the Pew Research Center. Results were based on a survey of 2,969 adults.
One of the most provocative findings relates to peoples’ perception of when old age begins. Answers varied across the generations: while young people (age 18 to 29) said they thought 60 was the threshold, middle-aged people moved the bar closer to age 70 and people 65 and older pushed it even further, to age 74.
In an equally interesting, parallel finding, older adults said they felt younger than their actual age – by 10 years or more.
In academic circles, the study of people’s age perceptions is known as “age identification.” Research suggests that older adults think they’re younger than they actually are when they’re healthy, active, and have a purpose in life.
“To me, old age is always fifteen years older than I am,” said Bernard Baruch, a famous financier who died in 1965 at the ripe old age of 95, voicing a widespread sentiment.
This disconnect between society’s notion of what constitutes old age and how individuals perceive themselves is revealing. Who wants to identify as “old” when our cultural narrative about aging - one that revolves around physical decline, loss of efficacy and purpose, isolation and irrelevance – is fundamentally negative?
It turns out, there are health consequences attached to our perceptions about getting older.
In an intriguing line of research, Becca Levy of Yale University’s School of Public Health has shown that people who internalize negative stereotypes of aging are more likely to respond poorly to stress, less likely to take good care of themselves, and more likely to experience cardiovascular events and other serious health problems.
Conversely, people with positive images of getting older live 7.6 years longer than those with negatives outlooks, Levy’s research has demonstrated.
In other words, images of dimwitted, sluggish, incompetent, and unattractive old people that circulate widely in our society aren’t just in bad taste. They’re potentially dangerous to people’s health.
There’s a countervailing push from organizations that recognize the insidiousness of negative stereotypes and want to alter our social construct of aging. One example is the International Council on Active Aging “rebranding aging” campaign, launched last year.
The danger here is that efforts to create a new narrative focused on the positive aspects of aging – one that centers on activity, wellness, encore careers, volunteering, and having more time to spend with friends, family – risks marginalizing older people who aren’t especially healthy or well off financially.
This split is reflected in the terminology we use to describe this stage of life. Recently, I’ve come across the terms “wellderly” and “illderly.” Their meaning is clear, and more commonly used terms such as the “young-old” (translate: healthy and active) and the “old-old” (translate: frail, with a larger share of disabilities) essentially serve the same purpose.
Which brings me back to that Pew Research poll.
While there are many interesting insights in the Pew study about older people, reporters who want to know how people actually experience aging – one of life’s profound transitions – will find no substitute for face-to-face interactions.
One of the best pieces of advice I ever got from an editor was “go out there and see what’s going on, even if you don’t necessarily know what you’re looking for.” I’ll repeat it here, in a different context. When you’re writing about older people, go out and sit down with them and ask them about their lives.
You may encounter a degree of resistance: Many seniors are reluctant to talk about themselves. You may have to probe gently and be agile in redirecting your questions if the conversation isn’t moving along as you had hoped. You may have to spend some time making a personal connection before you start getting answers.
But I suspect you’ll be surprised by what older people will tell you, if you take the time, suspend judgment and truly listen.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
Ranking may lead to sources for reporting on aging
Health reporters covering the aging beat might be interested in which hospitals offer the best geriatric services, according to recent rankings published by U.S. News & World Report.
Don’t take the magazine’s word as gospel; its method for rating hospitals has been questioned by many and is by no means the definitive word on the subject.
That said, each of the hospital departments mentioned on the U.S. News list houses experts knowledgeable about aging and health. You might want to put the list in a file so it’s handy when you’re looking for sources to comment on a story you’re covering.
These are the top 25 geriatrics departments, according to the magazine:
1. Mt. Sinai Medical Center, New York
2. Ronald Reagan UCLA Medical Center, Los Angeles
3. Johns Hopkins Hospital, Baltimore
4. Massachusetts General Hospital, Boston
5. Duke University Medical Center, Durham, N.C.
6. Mayo Clinic, Rochester, Minn.
7. Cleveland Clinic, Cleveland
8. New York-Presbyterian University Hospital of Columbia and Cornell
9. UPMC-University of Pittsburgh Medical Center, Pittsburgh
10. Yale-New Haven Hospital, New Haven, Conn.
11. University of Michigan Hospitals and Health Centers, Ann Arbor
12. UCSF Medical Center, San Francisco
13. Johns Hopkins Bayview Medical Center, Baltimore
14. Hospital of the University of Pennsylvania, Philadelphia
15. NYU Langone Medical Center, New York
16. Hospital for Special Surgery, New York
17. Beth Israel Deaconess Medical Center, Boston
18. Rush University Medical Center, Chicago
19. Barnes-Jewish Hospital/Washington University, St. Louis
20. University of Washington Medical Center, Seattle
21. St. Louis University Hospital, St. Louis
22. Brigham and Women’s Hospital, Boston
23. Methodist Hospital, Houston
24. University Hospitals Case Medical Center, Cleveland
25. Indiana University Health, Indianapolis
I’m struck by the absence on this list of hospitals in the South, the Southwest and the interior West. This may have to do with U.S. News‘ methodology, which relies heavily on recommendations from medical specialists. But it’s a bit disconcerting, nonetheless.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
Understand how Supreme Court’s possible decisions will affect seniors
Older Americans have a lot at stake as the Supreme Court considers the future of the Affordable Care Act, and it behooves reporters on the aging beat to understand this slice of the health reform debate.
Howard Gleckman gave a good overview recently on his “Caring for our Parents” blog. Gleckman is a former senior correspondent at Business Week, author of the book “Caring for Our Parents,” and a resident fellow at the Urban Institute.
Here’s a look at how older adults might be affected, drawing on Gleckman’s piece and my thoughts.
Medicare. As Gleckman notes, health reform offers an important benefit to seniors: an eventual end to the dreaded “doughnut hole” – the multi-thousand dollar gap in coverage for prescription drugs, available through Medicare Part D.
If the Supreme Court strikes down only the individual mandate component of the Affordable Care Act – the requirement that everyone carry insurance or pay a penalty – there’s no reason this provision couldn’t stand, except for its expense. If, however, the Supreme Court invalidates the entire Act, this benefit may well disappear, leaving many seniors vulnerable to high medication costs.
Since adults 65 and older already have coverage through Medicare, they wouldn’t be harmed if the court overturns key provisions expanding health insurance coverage to 30 million Americans. But uninsured adults in the 55 to 64 age group would be hard hit. As Families USA noted in a report:
“While people in this age range are currently the least likely to be uninsured, they can have very serious problems finding coverage if they leave or lose their jobs: They are too young for Medicare and too old to purchase affordable coverage on their own in the private individual market. Options for coverage outside the workplace are limited.”
It’s highly unlikely that Medicare will cancel new preventive services for seniors - a popular element of health reform that became effective in January 2011. Services now provided without beneficiary cost sharing include an annual wellness exam and screenings for diabetes, cognitive impairments, high cholesterol and cancer.
Medicaid. Health reform would add up to 16 million new members to Medicaid, mostly poor children and adults under age 65. In terms of seniors, its biggest impact lies in two areas: a push to provide more long-term care services outside of institutions (see below) and a drive to better coordinate care provided to “dual eligibles” – sick, poor seniors covered by both Medicare and Medicaid.
A complete invalidation of the Affordable Care Act would hamper both initiatives by withdrawing legislative support and crucial funding. Both initiatives could survive a partial invalidation of the Act, but whether leadership for these changes would materialize is in question.
Home and Community-Based Care. For years, advocates have pressed for an expansion of long-term care services available to seniors outside of nursing homes. The Affordable Care Act recognized this and directed billions of dollars toward so-called “home and community-based services,” as Gleckman notes:
“The ACA includes important new incentives for states to expand Medicaid long-term care services for people living at home. Today, nursing homes still get the lion’s share of Medicaid long-term care dollars. Yet seniors and adults with disabilities overwhelmingly want to receive assistance at home. The ACA includes a number of new programs to expand those home and community-based programs, but all would die with the law.”
Gleckman is correct if the entire law is upended. But if only the individual mandate is rejected by the court, it’s likely this shift toward home and community-based care will persist, if only in a reduced form. The economics and preferences of aging baby boomers will require these changes to occur.
Integrated care. If health reform is torpedoed by the Supreme Court, many experts expect the government to continue testing innovative programs that improve medical care and lower costs. But several prominent Republicans have questioned the value of programs funded through the newly created Center for Medicare and Medicaid Innovation and appear poised to mount political attacks on its work.
Gleckman says that “In the long-run, perhaps the most important provisions for seniors are a far-reaching package of experiments aimed at improving the way care is delivered to people suffering from chronic disease, as nearly all seniors do. ” He predicts that these demonstration projects will end if health reform is struck down by the Supreme Court.
Other experts believe similar efforts to improve chronic care will be undertaken by the private sector if health reform fails.
Long-term care insurance. The CLASS Act, part of the health reform package, would have created the nation’s long-term care insurance program but that initiative fell by the wayside when the Obama administration decided that it was unaffordable. See AHCJ’s recent tip sheet on long-term care for more details.
Without this program, long-term care insurance will remain an unaffordable expense for many consumers, especially as insurers across the country sharply raise premiums.
This is a lot to assimilate, but here’s another thought: if health reform is deep sixed by the Supreme Court, it will be many years before Congress will be willing to undertake another substantial overhaul of the health care system, Gleckman suggests. That’s a sobering thought, since older adults’ health is frequently compromised by costly, sometimes unjustified, fragmented and uncoordinated care in the system we now have.
Related: Joanne Kenen, AHCJ’s topic leader on health reform, writes that there is still plenty to watch and report on as the Supreme Court deliberates.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
Tools, questions to see if nursing home oversight is really working in your area
Any story that mentions maggots coming out of a patient’s ear is going to grab my attention.
After recovering from the “yuk” factor, I was appalled after reading Christina Jewett’s account last week of a new federal report on California’s nursing homes.
The report was issued by the Office of the Inspector General of the U.S. Department of Health and Human Services and it paints a sorry picture of nursing home oversight in the nation’s most populated state. It examined three homes that often send patients with severe infections or bed sores to nearby hospitals – an indicator of potentially poor quality care.
Among the study’s findings:
- Nursing home regulators underestimate the severity of problems they spot in facilities. This happens with 13 percent of findings and may influence homes’ ratings on Nursing Home Compare.
- Regulators routinely accept plans by nursing homes to correct problems even though these plans don’t meet federal standards. This happens 77 percent of the time.
- Follow-up inspections are required in all cases in which homes are asked to draft a corrective action plan. But in practice, California inspectors only conduct such inspections when problems are deemed serious or involve a financial penalty.
Want to hear more about those maggots? Jewett notes that example comes from an earlier HHS Inspector General report that examined how California is handling nursing home complaints. She writes:
“That report highlighted the case of a woman who showed signs of neglect based on ‘multiple pressure sores and maggots coming from the resident’s ear.’ State inspectors determined that the nursing home’s ‘wound care nursing documented in the medical record that the resident’s right ear was treated on April 24, 2008, when no treatment was actually provided.’”
The report also found that when complaints were investigated, inspectors tracked violations of state nursing home standards but frequently failed to site federal deficiencies.
How unbearably sad that vulnerable older people have to endure these kinds of conditions in facilities that routinely fail to provide adequate care to residents.
What will you find?
If you’re interested in following up on similar issues, start by checking with the agency in your area responsible for nursing home oversight. How many staff members do they have and how many homes are they responsible for monitoring? Have budget cuts reduced the number of staff, putting pressure on their ability to conduct meaningful oversight?
What kind of process is used to monitor nursing homes in your state? How often do inspectors visit homes? Are inspections announced or unannounced? Are actual inspections conforming to this schedule?
How many complaints have been filed against nursing homes in your state? What happens when inspectors go in and state or federal violations are noted? If homes have to prepare a corrective action plan, are follow-up inspections made to certify that the changes listed were actually made? If not, what assurance is there that such plans make any difference?
Talk to your state’s long-term care ombudsman about the adequacy of its nursing home inspection process. Ask the ombudsmen which, if any, consumer groups are monitoring nursing home conditions.
Check out the ratings on Medicare’s Nursing Home Compare (or use AHCJ’s version in a more manageable format in Excel spreadsheets), and pay special attention to homes that have received one-star ratings (the lowest) several years in a row. USA Today looked at this issue in a recent story which you can read here. Finally, look at AHCJ’s extensive guide to covering the health of local nursing homes for more tips on information sources and what kinds of issues to look for.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society. If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
Retirement center modifies dining policy following media coverage
Stories by The New York Times and The Virginian-Pilot about discriminatory dining room practices at a continuing care retirement center (CCRC) in Norfolk, Va., have had an impact.
The CCRC said Monday that residents can eat in the facility’s main dining room and two other dining areas if they pass a simple health screening, get their doctor’s approval, and sign a consent form. Previously, the CCRC had sought to limit the dining rooms to people living independently and exclude residents in assisted living and the facility’s nursing home. (Under pressure, it announced some exceptions but residents complained they didn’t go far enough.)
Paula Span wrote about the CCRC’s about-face Tuesday on the New York Times New Old Age blog; she notes there it applies only to people already living in the complex, at least for the moment. Covering Health blogged about the controversy last month.
Find out how demographic shifts affect the aging community in your area
The population of people 65 and older is growing, but not equally across the United States.
Some cities are experiencing sharp increases in the number of older residents; in other areas, this group is expanding more slowly.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
These population trends are important because “the benefits and challenges of a growing senior population will hit each metro region differently,” notes John K. McIlwain, the J. Ronald Terwilliger chair for housing at the Urban Land Institute, in a recent article reprinted in The Atlantic Cities.
In urban areas with large numbers of seniors, health care and housing needs will be different in kind than in communities with a younger population. More programs that help people age in place will be important, as will access to services such as home health and custodial care, transportation, assisted living, and hospital, physician, and rehabilitative care.
Also, seniors are “more politically conservative, and what they want and need from a community is often quite different from what young families want and need,” McIlwain notes. “This is changing the local political climate in places where the growth of seniors is significant. Seniors are, for instance, pushing for more parks, open space, and libraries, often at the expense of funds for schools and playgrounds.”
The data McIlwain cites in his article is based on an analysis of the 50 largest metropolitan areas in the United States and spans the period from 2000 to 2010, a decade divided by the housing boom that occurred in its first half and the housing bust/recession that dominated its second half.
During this period, urban areas with the fastest-growing older populations were Raleigh, N.C., Austin, Texas, and Las Vegas.
| Rank | Metro Area | Percent Growth |
| 1. | Raleigh | 60 percent |
| 2. | Austin | 53 percent |
| 3. | Las Vegas | 50 percent |
| 4. | Houston | 39 percent |
| 5. | Dallas | 38 percent |
| 6. | Charlotte | 36 percent |
| 7. | Phoenix | 33 percent |
| 8. | Denver | 32 percent |
| 9. | Orlando | 29 percent |
| 10. | Riverside | 28 percent |
New Orleans, hit by Hurricane Katrina, lost residents 65 and older, as did Pittsburgh, Penn., and Buffalo, N.Y.
| Rank | Metro Area | Percent growth |
| 1. | St. Louis and New York City (tie) | 7 percent |
| 2. | Detroit | 6 percent |
| 3. | Milwaukee | 4 percent |
| 4. | Tampa | 4 percent |
| 5. | Philadelphia | 4 percent |
| 6. | Providence | 1 percent |
| 7. | Cleveland | 1 percent |
| 8. | Buffalo | -3 percent |
| 9. | Pittsburgh | -5 percent |
| 10. | New Orleans | -5 percent |
The nation’s two largest cities topped the list of cities that gained the most older residents. But this number is less meaningful than growth rates, because these metropolises have enormous populations to begin with.
| Rank | Metro Area | Number of New Seniors |
| 1. | Los Angeles | 199,000 |
| 2. | New York City | 167,000 |
| 3. | Dallas | 153,000 |
| 4. | Atlanta | 147,000 |
| 5. | Houston | 144,000 |
| 6. | Phoenix | 129,000 |
| 7. | Washington, D.C. | 127,000 |
| 8. | Riverside, California | 98,000 |
| 9. | Chicago | 87,000 |
| 10. | Minneapolis | 69,000 |
It’s easy for you to compile similar data for your community: Look at Census Data for 2000 and 2010 and compare the 65-plus population in those years. For help doing that, this tip sheet by Frank Bass has tips on using Census data for health reporting.
If you want to dig in deeper, talk to your city’s planning department about projected growth in the senior population through 2020. Are planners studying what this population will need going forward and how to make your area more senior-friendly?
Ask local hospitals what portion of their business comes from Medicare and how they expect this segment of their business to grow. Are they undertaking any special efforts to appeal to the growing senior population?
Find out what senior housing operators are planning for your community. Are new assisted living centers or other types of housing being built? Are new services designed to help seniors age in place being offered?
Try to understand the costs associated with a growing older population. How will budget-strapped cities and counties handle this burden? What tradeoffs are entailed?
Finally, McIlwain wisely notes in his piece that the trends of the past decade won’t necessarily hold going forward. Clearly, economic woes have hit older adults hard and affected their retirement portfolios, their ability to sell homes, and their plans for the future. This, too, is a trend to watch as you keep an eye on the senior population in your community.
Belluck shows us dementia behind the prison walls
Dementia is a harrowing illness. Mix it with life in prison and you get a truly alarming situation.
Pam Belluck of The New York Times opened our eyes to the issue last week in a sobering piece about aging prisoners with serious memory problems, which are often unrecognized and undiagnosed.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
It’s hard to say which is more attention-grabbing in Belluck’s riveting story: the greying prisoners with dementia who bang their heads against walls, urinate on floors, strike out in agitation, and shake with paranoia, or the convicted killers who tend to them after beating, stabbing or shooting relatives, friends or strangers.
Belluck sets the scene by discussing longer sentences that are causing more inmates to age in place behind bars. An estimated 125,000 prisoners are 55 and older, she notes, and these inmates are “more prone to dementia” because of violence, head injuries, substance abuse, limited education, depression, and others forms of poor health.
Overcrowded, under-staffed prisons are “desperately unprepared to handle” demented inmates, who typically need extra oversight, additional medical care, and often protection from other “predatory prisoners,” Belluck observes.
So, some facilities are enlisting younger inmates to help older inmates with memory problems. Belluck sets her story at the California Men’s Colony in San Luis Obispo, where the helpers, called Gold Coats, get $50 a month for their efforts.
There, she discovers details that make this story stand out:
“When a prisoner tried stealing a patient’s dessert, Mr. Montgomery, one of the Gold Coats, snarled, ‘You got to give him his cookie back.’
“‘Who are you, the PO-lice?’ the inmate barked. Mr. Montgomery retorted, ‘Yes, I’m the PO-lice!’”
There are unexpected benefits for some of the helpers, who do everything from filing older inmates’ fingernails to changing diapers. Shawn Henderson, a convicted double murderer, was finally paroled after serving as a Gold Coat, and claims he learned an important lesson from the work.
“Doing a job where ‘you get spit on, feces thrown on you, urine on you, you get cursed out’ helped teach him to cope outside prison, said Mr. Henderson, 46. ‘Now when I come into an encounter like that on the street, I can be a lot more compassionate.’”
But Belluck doesn’t pretend all is for the best. The world she describes is a tragic one, where even prisoners who appear helpful have horrific, violence-filled pasts.
There’s a sense of ghosts moving through this story: the deceased but still remembered victims of terrible crimes that sent men here, and shadows that move fleetingly through demented prisoners’ minds, evoking a time that once was but is no longer. Belluck writes:
“One 73-year-old inmate stands by a gate most mornings, waiting for his long-dead mother to pick him up. Sometimes he refuses to show, afraid of missing her.” Another prisoner, 71, pines for his wife, not realizing that his crime had been “murdering the woman he was tearful about,” according to a statement from a psychiatrist.
This story is well worth examining closely because of its unflinching approach, its depth of perspective, its unsentimental humanity, and its willingness to explore uncomfortable realities associated with aging under extremely difficult circumstances.
Dining decision brings discrimination issues in aging to forefront; lessons for reporters
Paula Span of The New York Times clearly struck a nerve with her recent story about an upscale retirement community’s decision to exclude certain residents from its country-club style dining room.
The residents in question lived in assisted living apartments or a nursing home that are part of the Norfolk, Va., continuing care retirement community (CCRC).
For years, some had eaten in the main dining room, with its white-clothed tables, fancy food and nice views, without a fuss.
But last year, management at the complex decided that only people residing in independent living apartments could take their meals there.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
Residents of assisted living would have to eat in their own dining room, as would nursing home residents, management declared.
Yes, it’s a form of segregation, based on older peoples’ relative health.
And yes, it speaks to a little-discussed hierarchy often found among the old, with those who are “well” – active, mobile, without significant impairments – on top and those who are sick or disabled on the bottom.
We might not like to acknowledge this aspect of aging, but it’s a reality in all kinds of settings, including nursing homes where more “with it” residents often look down on those with significant cognitive or physical problems.
More than 150 people wrote in to comment on Span’s article, which appeared in the paper and on the Times‘ New Old Age blog. Many said they had experiences of the same sort.
MJ of New York City wrote, “A similar issue came up in my mother’s CCRC. Some residents wanted people who used wheelchairs to be barred from sitting in the spacious front lobby because they thought it was ‘depressing’ to see fellow residents in wheelchairs.”
An East Coast reader using the pseudonym DemocracyNow noted:
“When my father was in assisted living, I saw this kind of discrimination practiced not by the facility, but by the residents themselves. Healthier patients would form cliques, like the cool kids in high school, and would sit at their own tables. Those who were perfectly healthy enough to engage in lively conversation, but were saddled with walkers or a wheelchair or an oxygen tank, would be banished to the outer reaches of the dining room, sometimes left to eat alone. It was a sad sight.”
Many readers called the practice of segregating CCRC residents at meals “appalling,” “disgusting,” “mean spirited” and noted that the practice appeared driven by fear.
Kate in Boston commented, “The residents in independent-living situations are looking at what can and very likely will happen to them over the next several years and it terrifies them.”
Curtis Selden Cone of Berkeley observed that the story spoke of “prejudice against the process of aging itself, which often involves physical frailty. The irony of the exclusion is that the individuals who are supporting this, may find themselves being excluded in the near future due to some disability.”
Others suggested that some kind of compromise was probably necessary. When people are seriously disabled, unable to eat on their own, and require extra assistance, it’s probably appropriate for them to eat in a separate space, several said. In this the case, dining rooms for more disabled residents should be similarly comfortable and inviting, they added.
Indeed, the CCRC that Span wrote about eventually let assisted living residents eat in the main dining room if they passed a functional assessment and if they had transitioned to assisted living from independent living. But nursing home residents remain excluded, as do people who move directly into assisted living when they enter the facility.
This story holds important lessons for reporters writing about aging and health:
- Don’t assume that negative attitudes about being old and frail are held only by the young. Deeply ingrained cultural values favoring youth and vigor often remain with people through their own latter years.
- Don’t think of the elderly as being a monolithic population. They’re not. The kinds of divisions that characterize people throughout their lives – differences of wealth, health, education, temperament and more – remain as people age and shape their preferences and experiences.
- When you write about senior housing, be alert to the culture of senior housing facilities as well as health or safety concerns. Are these facilities inclusive? Or are healthier residents treated differently than more disabled residents? What do the people who live in these facilities say about their own situations?
Update: Elizabeth Simpson of The Virginian-Pilot published her own take on this CCRC’s controversial dining policies today.
Watch for a tip sheet with detailed information about senior housing on this site in the months to come.
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