- Greater Good : Johns Hopkins Center for Innovative Medicine
- Family Caregivers Are Rarely Asked About Needing Assistance With Caring for Older Adults
- Fewer than one-third of caregivers to older adults report being regularly asked by health care workers about needed support
- Caregiving not as bad for your health as once thought, study says
- The Surprising Health Bonus of Caregiving
- Make your own health a priority
- Draw strength from your faith
- False Feeling of Security Signaled by Johns Hopkins’ Immune System Study
- The Science is Fine. The Message However …
- The Problem is Greater than Biomarkers
- “If Done Right…?”
- Unintended Consequences
- About Peter Rosenberger
Greater Good : Johns Hopkins Center for Innovative Medicine
Patients come to Johns Hopkins Bayview from all over the world. That’s an impressive fact. But those patients come to our doors. Should we go to theirs, too?
Yes, says Panagis Galiatsatos, M.D. He believes that although Johns Hopkins Bayview is an internationally recognized institution, it is also a local hospital, and “it is up to us to go out into the community we serve.
” In 2011, when he was a resident, Galiatsatos began going out into the community to talk to people about ways to improve their health. He met them in their own neighborhoods – at senior centers, churches, and synagogues.
“In medical school training, there has not been much emphasis on making sure the patient understands what to do to become healthy and to stay the hospital,” he says.
“For many of the people I saw who kept coming back to the hospital, it was not a failure of the disease, but a failure of communication – because they didn’t really know how to take their medicine properly, or keep their blood pressure down, or what foods to eat or not to eat.”
Now as a fellow in pulmonary and critical care medicine, he is co-director of a program called Medicine for the Greater Good, with Colleen Christmas, M.D.
Johns Hopkins Bayview feels so strongly about the importance of reaching out to our neighbors that “we built in a required Medicine for the Greater Good service activity for our internal medicine residents,” Galiatsastos says.
The idea was not to add to the burden of already busy residents, but to have them do one activity, big or small, “of their choosing, some time during their three years of training.
” The projects were as different as the residents themselves, ranging from medical journalism to working with a church that had been partially burned during the downtown riots in 2015, to reaching out to elementary schools to promote health for students and teachers.
“It started off with a very simple concept, to get people out into the community. But it’s so much bigger now. I love what we’re doing.”
There have been close to 300 projects – including weight loss campaigns, partnerships with the Maryland Food Bank, an asthma initiative in the public schools, and programs to help caregivers.
Medicine for the Greater Good has reached out to churches and synagogues, to community homes and centers, and has included premed students at the Johns Hopkins University, students at the School of Nursing, and the School of Business – all of whom simply want to help their community.
Galiatsatos has enlisted local bands, classical musicians at the Peabody Conservatory, Baltimore chefs, and neighborhood leaders to help promote health and create partnerships between Johns Hopkins Bayview and Baltimore.
He has put hundreds of miles on his car (on his own dime) driving all over town to meet with groups interested in this outreach program – and to establish trust with them. Baltimore City has 32 zip codes; so far, MGG has had projects in 17.
In November, the Bayview Internal Medicine Residency directors published a perspective article in the New England Journal of Medicine, called “Graduate Medical Education in the Freddie Gray Era.”
The authors, Sammy Zakaria, M.D., M.P.H., Erica Johnson, M.D., Jennifer Hayashi, M.D.
, and Christmas, addressed the “structural racism” in Baltimore’s history: “Until the 1950s, laws and property-development regulations hindered development in black-majority neighborhoods and prevented migration of blacks into more affluent white-majority areas… As late as 1959, some physicians refused to treat black patients, 10 of Baltimore’s 17 hospitals declined to provide childbirth accommodations for black women, and many of the remaining hospitals segregated blacks into separate wards. During the civil rights era, business practices remained unfavorable for blacks in these areas; many banks…refused to give black applicants mortgages or charged them onerous interest rates. Real estate agents and developers encouraged “white flight,” weakening and depopulating already fragile neighborhoods. Eventually, distressed areas became nonviable and were subjected to well-meaning but unsuccessful redevelopment schemes, including placement of large highways and construction of forbidding public housing projects.
By itself, outstanding medical care ly won’t help our most vulnerable neighbors, “unless the intractable sense of hopelessness …is also addressed.”
“As a result, the populations of many of Baltimore’s dilapidated neighborhoods are disproportionately black. Inhabitants of these neighborhoods must contend with poverty, drug use, unemployment, crime, and hopelessness. Children who grow up in these environments have little chance of succeeding in life.
Freddie Gray grew up in one of the worst areas of Baltimore, the child of an illiterate heroin addict, in a house with high lead levels, minimal food, and intermittent electricity. His blood lead level, tested over several years in his childhood, was consistently elevated… severely affecting his neurologic development.
It’s not surprising that he failed in school, couldn’t hold down a job, and had multiple encounters with the police.”
Such environments, the authors continued, are synonymous with high rates of illness and premature death. “People living in poor areas of Baltimore have a life expectancy 20 years shorter than that of residents of wealthy neighborhoods.
As physicians trained to diagnose and treat disease, we naturally want to …provide outstanding medical services to this vulnerable population.
” However, these efforts most ly won’t have much of an effect “unless the intractable sense of hopelessness affecting residents of poor areas is also addressed.”
The authors went on to talk about a bright spot in this bleak picture: Medicine for the Greater Good. In less than a month, according to the NEJM’s database, that article had been viewed online more than 24,000 times by people from more than 23 different countries.
An article about MGG in the Baltimore Sun prompted U.S.
Congressman Elijah Cummings to write to Ron Peterson, President of the Johns Hopkins Hospital and Health System: “Such programs will help address the significant unmet needs of the Baltimore community while also helping doctors to gain a greater understanding of the complex issues many patients face, and of what they can do in their practices to help their patients lead better lives. I hope the Medicine for the Greater Good program can eventually include all of the Hopkins Health System.”
The possibilities are “endless,” says Galiatsatos, who hopes to secure grant funding to take the program to new levels. “It started off with a very simple concept, to get people out into the community. But it’s so much bigger now. I love what we’re doing.”
Family Caregivers Are Rarely Asked About Needing Assistance With Caring for Older Adults
Home > News > News Releases > 2020 > Family Caregivers Are Rarely Asked About Needing Assistance With Caring for Older Adults
January 24, 2020
Fewer than one-third of caregivers to older adults report being regularly asked by health care workers about needed support
Family caregivers usually are not asked by health care workers about needing support in managing older adults’ care, according to a study led by researchers at the Johns Hopkins Bloomberg School of Public Health.
Most of the surveyed caregivers who interacted with health care workers reported that the latter always or usually listen to them (88.8 percent) and ask about their understanding of older adults’ treatments (72.1 percent). A much smaller proportion (28.2 percent) reported that health care workers always or usually asked them whether they needed help in their care of the older adult.
The figure was significantly higher, 37.3 percent, for the subset of caregivers caring for older adults with dementia.
The study, published January 24 in JAMA Network Open, was an analysis of survey data on 1,916 caregivers, mostly spouses or other family members, who provide care to older adults with activity limitations living in community settings such as private homes, apartment buildings, or senior housing.
“These results suggest that we as a society could do a better job of supporting family caregivers, who are providing the lion’s share of day-to-day care to older adults with activity limitations,” says study lead author Jennifer Wolff, PhD, Eugene and Mildred Lipitz Professor in the Department of Health Policy and Management at the Bloomberg School. Wolff is also director of the Roger C. Lipitz Center for Integrated Health Care at the Bloomberg School.
Nearly 20 million Americans are unpaid, usually in-family caregivers for adults over 64, according to the National Academy of Sciences, Engineering, and Medicine.
The care they provide often includes help with taking medication, bringing the older adult patient to a health care facility, and assisting with other health care activities.
Given these important functions, the interactions between these caregivers and health care workers can impact the quality of care for the older adult patient.
“It’s a potential point of intervention for improving care,” Wolff says.
To get a better picture of this caregiver/health care-worker interface, Wolff and her colleagues analyzed 2017 survey data from the National Health and Aging Trends Study (NHATS) and the related National Study of Caregiving (NSOC), including 1,916 caregivers who were assisting 1,203 community-living, activity-limited older adults. The average caregiver age was 59. About 900 of these caregivers reported having interacted with health care workers of the older adult in the prior year, and also provided responses to key questions about those interactions.
The study results, Wolff says, highlight the fact that caregivers are still largely disconnected from the health care system for older adults, which in turn suggests that there is the potential to improve the quality of care. “That could mean identifying caregivers who could use care-related education and training or who simply need a break, for example, through temporary ‘respite care’ of the older adult patient,” she says.
Co-author Vicki Freedman, PhD, with the University of Michigan's Institute for Social Research, co-leads the NHATS and NSOC with Wolff and co-author Judith Kasper, PhD, professor in the Bloomberg School’s department of Health Policy and Management.
Wolff and her colleagues are continuing to study the relationship between caregivers and the health care system, as well as interventions that could improve it and thereby improve care for older adults.
“We’re developing strategies to more effectively engage family caregivers in care delivery,” Wolff says.
“Family Caregivers’ Experiences with Health Care Workers in the Care of Older Adults with Activity Limitations” was written by Jennifer Wolff, Vicki Freedman, John Mulcahy, and Judith Kasper.
The study was funded by the National Institute on Aging (U01AG032947, R01AG047859, R01AG054004).
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Media contacts for the Johns Hopkins Bloomberg School of Public Health: Caitlin Hoffman at 410-955-7624 or firstname.lastname@example.org and Barbara Benham at 410-614-6029 or email@example.com.
Caregiving not as bad for your health as once thought, study says
For decades, articles in research journals and the popular press a have reported that being a family caregiver takes a toll on a person's health, boosting levels of inflammation and weakening the function of the immune system.
Now, after analyzing 30 papers on the levels of immune and inflammatory molecules in caregivers, Johns Hopkins researchers say the link has been overstated and the association is extremely small. Caregiver stress explains less than 1 percent of the variability in immune and inflammation biomarkers, they report.
Their new meta-analysis was published March 10 in The Gerontologist.
“We're not saying that family caregiving can't be stressful, but there's a notion that it's so stressful that it causes deteriorating health and increased mortality.
This can lead to fear of caregiving and a reluctance to care for loved ones in need,” says first author David Roth, M.A., Ph.D., professor of medicine and director of the Center on Aging and Health at The Johns Hopkins University.
“We're challenging that narrative as being too exaggerated.”
According to the National Alliance for Caregiving, more than 34 million people in the U.S. provide care for a chronically ill, disabled or aged family member or friend in any given year. The value of the services provided by these family caregivers is estimated at $375 billion annually.
In 1987, a study concluded that caregivers of people with Alzheimer's disease had decreased levels of certain immune molecules.
Since then, other studies have suggested that family caregivers have increased mortality and rates of psychiatric diseases, decreased immune function and life span, and slower wound healing than other people.
After noticing statistical weaknesses in a handful of recent papers on caregiving and immunity, Roth and his colleagues wanted to take a fresh look at the more than three decades of papers on these ideas.
They focused their search on papers about immune or inflammatory biomarkers — molecules that can be detected through a blood test — and combed through databases of medical literature to find papers linking the chronic stress of family caregiving and these biomarkers.
After reviewing 132 full texts, they narrowed the meta-analysis to 30 original, data-based papers.
In all, the papers that Roth's group studied spanned from 1987 to 2016 and reported data on 86 biomarkers from 1,848 caregivers and 3,640 noncaregivers.
When the researchers began reviewing the manuscripts, Roth says they immediately noticed concerning trends — for one, the studies were quite small. Of the 30 studies, 16 had fewer than 50 caregivers, with some having as few as 11 or 14.
“A lot of these are small exploratory studies that can end up over interpreting what they find,” Roth says.
Roth adds that the studies tended to compare caregivers found in clinical settings with other adults recruited from senior centers, churches or other community organizations.
“These people differ in many factors besides just who is a caregiver,” Roth says. “Many of the so-called controls are healthy, socially active volunteers.
” Due to issues this, 11 of the papers were given a “moderate” (instead of “low” or “minimal”) ranking for potential bias.
When the team combined the data into a meta-analysis, it found an overall effect size of caregiving on biomarkers of 0.164 standard deviation units.
While the effect was statistically significant, the researchers reported that the association was generally weak and of questionable clinical significance. A standard deviation unit of less than 0.
20, Roth says, is generally thought to indicate a small effect size.
“It's not that we didn't find anything, but it's a whisper of an effect, not nearly as large as what people have been led to believe,” says Roth.
The team hopes its new look at the existing data helps encourage people to be more open to becoming caregivers. The researchers also hope it helps medical professions move away from the idea of caregivers as vulnerable.
“Caregiving, if done right, can actually be an extremely beneficial, healthy activity that enhances your life because you're engaging in pro-social behavior,” Roth says.
The researchers are now conducting a large population-based study with carefully matched controls and biomarkers collected at multiple times in order to get even more detailed information on the connection — or lack thereof — between caregiving and the immune system.
Materials provided by Johns Hopkins Medicine. Note: Content may be edited for style and length.
The Surprising Health Bonus of Caregiving
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With demands on time, energy, emotions and relationships, caregiving isn't easy. So you might think it would take its toll on the physical health of those who care for family members with chronic conditions.
But new research offers a positive surprise: Family caregivers may live longer.
This longevity advantage emerged when a team of scientists led by Johns Hopkins experts looked at six years of health data for 3,503 caregivers and an equal number of non-caregivers.
Those who regularly tended to the needs of a family member enjoyed a nine-month extension in life expectancy—even if they felt some stress and strain. The researchers also saw no differences in chronic health issues between the two groups.
“Taking care of a chronically ill person in your family is often associated with stress, and caregiving has been previously linked to increased mortality rates,” says David L. Roth, Ph.D.
, director of the Johns Hopkins Center on Aging and Health. But this study’s results painted a much more hopeful picture.
“In many cases, caregivers reported receiving benefits enhanced self-esteem, recognition and gratitude from their care recipients,” Roth adds.
If you are a caregiver—or know one—these smart strategies could help harness this advantage.
“Making sure to take some time off is crucial for caregivers — it helps maintain their health and provides an emotional break so that they can continue taking wonderful care of their loved ones,” Samus says.
- Better blood pressure. Getting away to do something pleasant was shown to reduce blood pressure in one caregiver study. That’s especially notable because caregivers may be at risk for high blood pressure.
- Less depression. Making time for exercise, time with friends, breathing exercises or whatever works for you could lower your risk.
- Reduced stress. Taking advantage of local adult daycare programs for your loved one can give you a stress-soothing break and help a family member with dementia sleep better at night too.
In an earlier Johns Hopkins study, researchers found that caregivers who stayed connected with friends and other family members had better emotional health than those who felt isolated, says researcher Quincy Samus, Ph.D., director of Translational Aging Services Core.
Don’t be shy requesting specific help so you can get some time away, Samus suggests: “Could Mom stay with you for a week in April?” or “Could you spend two hours with Dad next Wednesday so I can attend garden club?”
Make your own health a priority
Eat well, carve out time for exercise (even in short bursts) and get the medical care you need, including checkups, tests and flu shots.
About one in six caregivers say their responsibilities take a toll on their physical well-being. In one survey, three-quarters of caregivers who were in fair to poor health didn’t see their doctors as recommended.
More than half admitted to less-than-healthy eating and exercise habits.
Draw strength from your faith
“Caregivers who found meaning in their work through their religion or spiritual beliefs also had better emotional health in the study, even if they didn’t go to religious services,” Samus says.
Caregiving: The assistance family, friends and professionals provide to those who are old, sick or otherwise unable to care for themselves. Caregiving can include buying groceries, cooking meals, cleaning, assistance with bathing or personal care, making and driving someone to medical appointments, dispensing medicine, helping someone get in or bed, and more.
False Feeling of Security Signaled by Johns Hopkins’ Immune System Study
In a recent study on caregivers published on March 2019 in the Gerontologist, Dr. David Roth of Johns Hopkins Medical Center detailed the impact of caregiving on inflammation as well as the immune system. The study revealed that immune and/or inflammatory biomarkers of caregivers differ only slightly from non-caregivers.
The Science is Fine. The Message However …
While the science of the study is not up to debate, as the work at Johns Hopkins is meticulous and respected, the tone of the news statements about that scientific finding was disconcerting at best, callous at worst. Although clearly not his intention, it was as if Dr. Roth was lecturing all caregivers, saying, “Toughen up and shut up. You have no quantifiable justification to complain.”
Dr. Roth stated in a news release issued on April 10, 2019, “We’re not saying that family caregiving can’t be stressful, but there’s a notion that it’s so stressful that it causes deteriorating health and increased mortality.…It’s a whisper of an effect, not nearly as large as what people have been led to believe.” Some might categorize this as a ‘careless whisper.’
The Problem is Greater than Biomarkers
If looking at biomarkers as the indicator for better health, caregivers around the world can rest easier tonight as they see the headlines of articles that picked up Dr. Roth’s press release.
How comforting it must be for millions of caregivers to discover that their inflammation and immune issues remain similar to non-caregivers in this study sponsored by the National Institute on Aging.
But just because they now know it, doesn’t mean their billions of nerve endings received the memo.
It is unknown if such a study sponsored by chronic pain, autism, addiction, traumatic brain injuries, or mental illness associations would reveal similar results.
In addition, it remains unclear if biomarker data existed on the test subjects prior to their caregiving journey.
Furthermore, the press release did not seem to include the median timeframe of caregiving nor the average age of the test subjects.
Caregiving intersects a wide variety of impairments and is not limited to caring for the elderly. Nor is the health and wellbeing of a caregiver limited to the biomarkers indicated in this study.
If a caregiver loses themselves in depression and isolation so much that they fail to see their own physician—as 72% report—then those “whisper of a difference” biomarkers may not be as positive when a caregiver reaches the end of their emotional rope.
When faced with the gut-wrenching daily heartache of caring for someone in extreme intractable pain or severe mental illness, one’s biomarkers are not always on the tip of the tongue when discussing needs. One’s physical health may be in great condition, but in the presence of relentless heartache, even the best of health can’t compete with the desire for relief.
“If Done Right…?”
Bio-markers aside, a particularly troubling ‘unintended consequence’ of the Johns Hopkins report is that it evidently provided the impetus for Dr.
Roth to coldly conclude that caregiving, if “done right,” can actually be an extremely beneficial, healthy activity that enhances your life because you’re engaging in pro-social behavior.
” Speaking on behalf of 65 million caregivers, I can emphatically state that what may have been intended to be backhanded compliment was actually an outright insult.
How many caregivers now look at their own challenges and scratching their heads wondering whether they are ‘doing it right’ in their newly discovered ‘enhanced’ lives.
While the whisper of a difference in the biomarkers may now be ‘proven, the deafening cry of millions of broken-hearted caregivers is also present. Where is the follow-up study on that?
Admittedly, some of them may not be “doing it right” but at least they are doing it. Why? Because someone has to do it—and for most—they do it without training, resources, or support. They are doing it from the heart. They do it love.
Biomarkers don’t reveal broken hearts, especially those newly broken ones in exhausted caregivers who may secretly suspect not measuring up. Now have had those fears confirmed.
Now that Dr. Roth’s comments appear in publications across the U.S., one can’t help but wonder when a crusty patient receiving care will hurl Dr. Roth’s words at a weary caregiver, “If you were doing it right, this would enhance your life. You should thank me!”
Words matter and words from Johns Hopkins’ staff are particularly heavyweight. Pushing back against Johns Hopkins to better guard their words in a rebuttal release is a daunting task, but most caregivers face daunting tasks before breakfast each day.
About Peter Rosenberger
Peter Rosenberger host a national weekly radio program, “Hope for the Caregiver,” syndicated on more than one hundred radio stations. For thirty years, Peter has cared for his wife, Gracie, who lives with severe disabilities and chronic pain. His newest book is 7 Caregiver Landmines and How You Can Avoid Them. h