Caregiver Guides

Communication Skills Training at Johns Hopkins Medicine: Empowering Cancer Patients and Caregivers

Caregiver Guides | Johns Hopkins Medicine

BALTIMORE – A multi-disciplinary team from Johns Hopkins Medicine has developed an innovative communications training program designed to encourage active participation in managing cancer-related care.

Un existing training models, which focus almost exclusively on patients or physicians, this intervention combines the use of technology and long standing research on medical communication to reach all real world participants in a medical conversation.

The program involves patients, their caregivers, and physicians, following the notion that all participants in a conversation have the potential to influence its focus and content, and caregivers often have an active role in managing a loved one’s cancer care.

The learning curriculum was informed by decades of medical communication research showing that mastery of key skills has the potential to enrich relationships between patients and their medical team, positively affecting patients’ experience of care, and increasing clinical effectiveness.

The training is built around patient video profiles, created with a variety of medical needs and cultural backgrounds in mind: patients are matched with their best fit for a more inclusive experience.

Patients, caregivers, and physicians have the chance to develop a wide variety of skills, including how to ask questions about treatment options and side effects, the best way to evaluate and address treatment challenges and obstacles, and collaborating in shared treatment decision-making.

The overarching goal is to build an emotional rapport between patients, their treating physicians, and the patient’s caregivers.

The video scripts were developed in collaboration with the Johns Hopkins Community Advisory Groups, a dedicated group of local volunteers, cancer survivors, and other interested stakeholders.

These long-standing collaborators live in Baltimore City and Prince George’s county, areas that have been especially affected by issues related to cancer access and socioeconomic disparities.

The communication-training curriculum is currently being piloted on a controlled scale, but it has the potential to be deployed throughout the Johns Hopkins Clinical Research Network (JHCRN), which encompasses over 8 million of racially and ethnically diverse populations living in urban, suburban, and rural communities.

Facts and Figures

  • Twenty-five percent of JHCRN patients are from a vulnerable, underserved population, which includes individuals who are more than 60 years old and live in a zip code tied to statistically higher cancer mortality rates.
  • When a patient’s care partner helps facilitate communication behaviors, patients rate their physicians 42% higher on clarity and 29% higher on interpersonal skills than patients with less facilitative care partners.

About the Johns Hopkins Center to Reduce Cancer Disparities

The Johns Hopkins Center to Reduce Cancer Disparities (CRCD) was established in 2010 with the aim of providing equal access and quality services for cancer prevention, screening, treatment, and survivorship.

The center relies on community partners that advise on setting research priorities and engaging the community.

The CRDC is committed to reaching diverse and underserved communities to provide education, training, and research support; their outreach efforts help inform lawmakers, health professionals, and those working to improve health.

About Johns Hopkins Medicine

Headquartered in Baltimore, Maryland, Johns Hopkins Medicine unites physicians and scientists of the Johns Hopkins University School of Medicine with the organizations, health professionals and facilities of The Johns Hopkins Hospital and Health System. The mission of Johns Hopkins Medicine is to improve the health of the community and the world by setting the standard of excellence in medical education, research and clinical care.

About the Alliance to Advance Patient-Centered Cancer Care

The Alliance to Advance Patient-Centered Cancer Care, a multi-site initiative funded by the Merck Foundation, works to increase timely access to patient-centered care and reduce health disparities among under-served populations in the United States.

The Alliance includes the following organizations: Georgia Cancer Center for Excellence at Grady Health System, Johns Hopkins University School of Medicine, Massachusetts General Hospital (MGH) Cancer Center, Northwestern University Feinberg School of Medicine, The Ohio State University Comprehensive Cancer Center, The University of Arizona Cancer Center, and University of Michigan School of Nursing, which serves as the National Program Office (NPO). For more information, visit the Alliance to Advance Patient-Centered Cancer Care’s website at


Johns Hopkins Medicine: Healthy Aging

Caregiver Guides | Johns Hopkins Medicine

As members of the Baby Boomer generation – the largest demographic in the U.S. — grow older, many are balancing the demands of preserving their own health and caring for elderly family members with their own health conditions.

The Pew Internet & American Life Project reports that 80 to 89% of this generational cohort accesses online health information and that family caregivers—those responsible for some level of care of a loved one – are the largest consumers of health information online.

The two primary objectives of this campaign were:

1) To continue to position Johns Hopkins Medicine as a health and wellness brand by providing useful health and caregiver content to the Baby Boomer generation, thereby creating better connections with the physicians, researchers and experts from Johns Hopkins Medicine, and

2) Reach this generation with the accurate and relevant content at the right time in their life through their platform of choice, thereby creating meaningful interactions and building trust.

To execute this strategy, Johns Hopkins Medicine launched “Healthy Aging” in May 2014, an online health portal consisting of consumer-friendly articles centered on the Healthy Mind, Healthy Body, Healthy Connections, Family Caregiver Resources and relevant Disease and Condition information.

Content distribution took a multi-faceted approach through a targeted marketing campaign, incorporating elements of content syndication, organic and paid social media promotion, e-newsletter registration, plasma screen promos targeting patients and families in the doctor's office, relevant on-site advertising and more.

Outcomes continue to meet or exceed internal or external industry benchmarks.

The typical connected user consumes 285 pieces of content and engages with as many as 1,000 clickable links daily. Effective online social interaction is about connecting the people within your organization with the people in your community in a way that provides value to both.

Through the successful implementation of the Healthy Aging consumer engagement campaign, we were able to connect the people of the world with the groundbreaking knowledge and research provided by the experts at Johns Hopkins Medicine.

By studying, understanding and implementing this strategy across each platform, we sought to create meaningful interactions by providing highly consumable, engaging, relevant content to those who seek it, on their platform of choice.

  • Targeted posting on
    • Previous testing revealed our audience responds best to questions, quotes and images. Using quick and clever headlines succinctly enabled us to help our audience understand the value they would get from each article in a way that would resonate with our existing community and others with similar interests.
    • Using organic targeting to focus on users ages 45 and older resulted in a 64% increase in engagement.
    • Paid advertising and using 's tool Audience enabled us to use interest targeting to identify relevant users' interests — and target relevant groups.
  • Content syndication and
    • Through content syndication channels provided by Outbrain, we were able to place succinct headlines below articles on premier websites which were relevant to our readership — headlines which also performed well when posted in 's similar format.
  • Doctor's office promotions:
    Running :15 and :30 second spots through Accent Health on plasma screens enabled us to target patients and families already in the doctor's office. Additionally, an augmented reality panel with a trackable re-direct allowed the user to interact from their phone — all while waiting to meet with their physician.
  • Display banners on the health sections of popular websites:
    Display banner ads on relevant websites, such as AARP, allowed us to target placements to the Caregiving section and others that would be highly relevant.
  • Incentivized e-newsletter sign-ups:
    The free Guide for Family Caregivers served as an effective hook to draw users to register for our free e-newsletter.
  • Featured e-newsletter:
    To reach our existing audience, a featured e-newsletter was sent to current subscribers to inform them of Healthy Aging and to provide them with access to the Caregiver's Guide.
  • Theming content:
    All related social posts used the themed hashtag #HealthyAging. Johns Hopkins Medicine is among the dominant presences using this hashtag.
  • Pinterest:
    To reach a more visual audience, a Healthy Aging board was created on Pinterest.
  • Open Graph Tagging:
    In addition to strategic targeting by social media channel and platform, we ensured open graph tagging was accurate and appropriate — so whenever users shared this content, it would automatically appear in the most visually-pleasing format.

To date, these efforts have resulted in over 154K sessions to the Healthy Aging resource — 70% of which were driven through strategic digital outreach and promotion using , , content syndication and banner ads.

Additionally, over 23% of visitors engaged with the site at a deeper level, e.g.

sharing the content through their own social channel, engaging with 20 or more pages in a single visit, registering for our e-newsletter, opting to engage with our Find a Doctor tool, etc.

To date, there have been over 20K shares of the Healthy Aging content. 23% of users returned to the site, and on average, stayed 119% longer than the first time they visited — showing increased engagement and trust in the content.

Click through rates of our Healthy Aging sponsored “” ads (8.2%) exceeded the industry benchmark provided by Salesforce (2.3%) by 257%. Click through rates for Healthy Aging sponsored stories averaged 4.4%, exceeding our benchmark for other related content of 3.7% — an 84% increase.

The introduction of the sign-up incentive for the free e-newsletter resulted in a 26% increase in the total number of sign-ups, and a featured e-newsletter we sent to our audience detailing the launch of Healthy Aging received a 25% open rate and a 36% click-to-open rate, which both exceed industry benchmarks.


Caring for the Caregiver | Johns Hopkins Armstrong Institute

Caregiver Guides | Johns Hopkins Medicine

Every day, health care professionals face the risk of traumatic events — such as an unexpected death, a medical error, or an unplanned transfer to the ICU. Yet few hospitals have programs to support “second victims.” Too often, these employees experience self-doubt, burnout and other problems that cause personal anguish and hinder their ability to deliver safe, compassionate care.

The Caring for the Caregiver program guides hospitals to set up peer-responder programs that deliver “psychological first aid and emotional support” to health care professionals following difficult events.

Modeled on the Resilience in Stressful Events (RISE) team at The Johns Hopkins Hospital, the program prepares employees to provide skilled, nonjudgmental and confidential support to individuals and groups.

This training is offered by the Armstrong Institute in collaboration with the Maryland Patient Safety Center.

Step 1: RISE Implementation Training

Members of your core implementation team will participate in a one-day workshop — “Caring for the Caregiver: Implementing RISE” — where they will receive a roadmap and guidance for setting up a peer-responder program. We can bring the program to you, training anyone who will be responsible for designing your peer-responder program, overcoming barriers to implementation, and recruiting peer responders.

View Agenda

Step 2: Peer Responder Basic Training

Several months after the implementation workshop, have a multidisciplinary group of hospital employees take a one-day course, “Peer Support for Caregivers in Distress: RISE Peer Responder Basic Training.” Participants will learn how to deliver psychological first aid and emotional support to clinicians in distress.

We recommend that you recruit volunteers across disciplines and care settings to participate in this training, which is typically delivered at your organization.

View Agenda

Select an upcoming workshop date below to register. Registration closes five business days before the workshop start date, unless the course fills up first.

 Caring for the Caregiver Partners: $300 per participant.
Johns Hopkins Medical employees: No cost. Seats are limited.

Please see our Cancellation/No Show & Refund Policy.

Caring for the Caregiver Partners

  • Pelham Medical Center
  • Univ of MD- St. Joseph Med Cntr
  • Union Hospital of Cecil Cnty
  • Univ of MD- BWMC
  • Parkland Hospital
  • Gwinnet Medical Center
  • St. Jude Children's Hospital
  • Memorial Care Health System
  • Frederick Memorial Hospital
  • KSA- National Guard Health Affairs
  • Alabama Children's Hospital
  • University of Mississippi
  • Swedish Medical Center

Not with JHM or a Partner?
Contact Us for Details

Professor of Health Policy and Management and Medicine, The Johns Hopkins University

A practicing general internist who has studied the handling of medical errors for nearly 20 years, Wu coined the term “second victim” in a 2000 British Medical Journal article. He has since continued to study and write about the needs of traumatized health care workers, using these lessons to help develop the RISE program at Johns Hopkins and introduce it to other organizations.

Quality and Innovation Coach, The Armstrong Institute for Patient Safety and Quality Improvement

Connors became aware of the second victim phenomenon in 2001, after a patient unexpectedly deteriorated on the unit where she was a nurse.

Certain that peer support would have personally and professionally benefitted her and other traumatized colleagues, who struggled with the event for many years, she moved to create Johns Hopkins’ RISE program and infuse it with proven, effective approaches for stress management.

Chaplain, Johns Hopkins Children's Center

Norvell has helped develop the RISE program at Johns Hopkins since 2010. In addition to providing spiritual support to patients and families, he has always held supporting and counseling staff as a vital responsibility. He is committed to improving patient safety by helping staff members deal with the stressors they face daily.

I just want to thank you and let you know that the R.N. supported by RISE is thriving in her job never before. In fact, she is now teaching in the simulation lab. She recovered from this event and is helping to improve patient safety in our department.

Dennis Jones, D.N.P., R.N., C.C.N.S., The Johns Hopkins Hospital


Being a Caregiver

Caregiver Guides | Johns Hopkins Medicine

Linkedin Pinterest Living with a Chronic Disease Chronic Disease Caregiver Resources Aging Well Caregiving for a Senior

A caregiver provides assistance in meeting the daily needs of another person.

Caregivers are referred to as either “formal” or “informal.” “Formal” caregivers are paid for their services and have had training and education in providing care.

This may include services from home health agencies and other trained professionals.

“Informal” caregivers, also called family caregivers, are people who give care to family or friends usually without payment.

A caregiver gives care, generally in the home environment, for an aging parent, spouse, other relative, or unrelated person, or for an ill, or disabled person.

These tasks may include transportation, grocery shopping, housework, preparing meals. Also giving assistance with getting dressed, getting bed, help with eating, and incontinence.

If you fit the description of a family, or “informal” caregiver, you are not alone. According to the American Association of Retired Persons (AARP) and the National Alliance for Caregiving (NAC), estimates of more than 65.7 million Americans serve as informal caregivers either to a child with special needs or an adult who lives in the community and needs help.

Most caregivers (86%) are related to the care recipient with about a third caring for a parent. The average age of a caregiver is 49. Most caregivers are women (66%), but men also serve as caregivers.

It is also a myth that most of the elderly are cared for in nursing homes in the U.S. Most long-term care is provided by family and friends in the home.

Only 11% live in a nursing home or an assisted-living facility.

It is unfortunate that experts estimate that 1.3 million to 1.4 million children, ages 8 to 18, care for an adult relative. Three-fourths of these children care for a parent or grandparent.

Their responsibilities may range from bathing, dressing, assisting with mobility, preparing meals, dispensing medicines, and communicating with medical staff.

They do all this and their own school work, too.

We recognized the importance of family caregivers, as well as the physical and emotional stresses that can accompany caregiving. Hear how Johns Hopkins Bayview prepares and supports those caring for loved ones with health-related needs or limitations. 

Caring for an ill, aging, or disabled person can be a rewarding experience.

However, depending on the level of care needed and other demands on the caregiver's time and energy, it can also become an overwhelming responsibility.

When this happens, it may be time to explore other home health care choices, hiring a private caregiver. Here are some questions to ask yourself when considering a private caregiver:

  • How much time is needed to help care for the individual at home? Is this ly to increase or decrease over time?
  • What skill level is necessary to provide the best care for the individual at home?
  • Are family members and friends capable of providing the necessary care without any 1 individual becoming overburdened?
  • How does the ill, aging, or disabled individual feel about having a private caregiver assist with his or her care? Is he or she comfortable with the idea of a private caregiver? Does he or she understand the caregiver's need for care assistance?

Are you a family caregiver? This guide provides valuable information and resources to make your journey as easy as possible.

If the decision is made to hire a private caregiver, you will want to explore many choices. Also, it will be important to acknowledge and include the desires of the person who will be receiving care. Consider the following questions in your search for appropriate care:

  • What services would be required of the caregiver? (Try writing a job description outlining exactly what would be expected of a caregiver.)
  • Is the individual employed by an agency or organization licensed by the state?
  • What specific services will the caregiver provide, and will these services match your job description?
  • Will the patient's Medicare pay for the service? If not, decide exactly how services will be paid.
  • What are the qualifications of the person or people giving care?
  • Will the same person or people always be available, or will it be necessary to adjust to many different caregivers?
  • Does the agency or organization offer flexibility, making care available on weekends, at nights, and on holidays, for example?
  • How does the agency or organization make sure that its employees treat their patients and patient families with respect?

A report from the AARP revealed an increase in the participation of “informal” caregivers to provide care for older persons with disabilities and a decrease in the use of paid “formal” caregivers.

As a result, there is growing concern about the well-being of the “informal” caregiver. Caregiver health self-assessment questionnaires are available to help evaluate behavior and health risks.

 The National Family Caregiver Support Program can offer help and support in areas chore services, education, and counseling.

The NAC and the HIP Health Plan of New York wrote a brochure, Care for the Family Caregiver: A Place to Start.

One of the challenges faced by those who have been called to care is taking good care of themselves. Learn how to manage caregiver stress and take better care of yourself.


MIND at HOME, Memory Problems, Alzheimer’s disease, Johns Hopkins – Baltimore, MD

Caregiver Guides | Johns Hopkins Medicine

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Fifty million people have dementia worldwide, including 5.8 million in the US. Most are cared for in the community by informal family caregivers.

  However, formal care delivery is fragmented, inefficient and uncoordinated, resulting in excess unmet care needs, avoidable complications, and greater costs.

    Evidence-based approaches to dementia care that bridge medical, social supportive care services must be an international public health priority.  

Trained MIND at Home Memory Care Coordinators working with a clinical team create a care plan a patient and caregiver-centered, multi-dimensional in-home assessment.

  MIND at Home links individuals and caregivers with community-based agencies, resources, medical and mental health providers right in their own homes.

The Memory Care Coordinator helps the person with dementia and caregiver follow through with needs-specific recommendations and works with clinicians to tailor the plan to meet their changing needs over the course of the illness.

THE SOLUTION:                              MIND AT HOME

Persons with cognitive disorders receiving the MIND program had:

  • A delay in time to transition from home or death
  • Reduced risk of transition
  • Improved quality of life
  • Reduced unmet patient care needs
  • Time savings (i.e. fewer average hours per week with PT)
  • Reduced perceived caregiver burden
  • MIND participants' spending DECREASED compared to propensity matched controls (43% vs 57% total)
  • Long Term Care spending increased 46% for controls compared to 48% in MIND participants
  • Inpatient spending increased 14% for controls and 9% for MIND participants 
  • MIND participants had decreased spending for ED/Outpatient visits compared to controls

Samus et al., 2014, Amer J Geriatri Psychiatry; Tanner et al, 2014, Amer J Geriatri Psychiatry

Quotes from Caregivers who experienced MIND at Home first hand:

“I am happy to have someone to turn to when I have questions.”

“It helps me not to feel so alone in my caregiving problems. Just the acknowledgement of my problems and the attempt to get help for them is a great morale booster. I thought meeting twice with a psychiatrist was a super idea. She was most helpful.”

“It is very reassuring to have visits with the Care Coordinator. Is is such a blessing to know someone understands and cares and would take all this time to help navigate uncharted territories. Our family is very thankful indeed.”

“The program creates “an awareness” of symptoms for the dementia patient that I need in managing my home environment in caring for my husband. The program makes me feel that someone “cares” about me as the caregiver and about my husband who has Alzheimer's.”

“The time and focus given to a client and/or study partner to make sure they fully understand the and why it's about any problem they are enlightening us on. They show that they really are with us to help us in the very complex and emotional situation we are faced with each day!”


Caregiving not as bad for your health as once thought, study says

Caregiver Guides | Johns Hopkins Medicine

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.

Story Source:

Materials provided by Johns Hopkins Medicine. Note: Content may be edited for style and length.


Family Caregivers Are Rarely Asked About Needing Assistance With Caring for Older Adults

Caregiver Guides | Johns Hopkins Medicine

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).

# # #

Media contacts for the Johns Hopkins Bloomberg School of Public Health: Caitlin Hoffman at 410-955-7624 or and Barbara Benham at 410-614-6029 or


False Feeling of Security Signaled by Johns Hopkins’ Immune System Study

Caregiver Guides | Johns Hopkins Medicine

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.

Unintended Consequences

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