My experience as a caregiver, those of my clients and a large body of work proves that sustained and long-term caregiving can and does harm our health.
Imagine my surprise when this showed up in my news feed “Family caregiving may not harm health of caregivers after all.” The study was co-authored by a doctor affiliated with Johns Hopkins, published first in the American Association for the Advancement of Science (AAAS) EurekAlert! and stated caregiving “… may not harm….”
Imagine my frustration when within a day, it was published in HealthExec omitting “may“ to say family caregiving “…does no harm…”
Shame on HealthExec in leaving out the word MAY in their headline. It is not just bad journalism, in our busy, rushed, tweet-style communication these days, it has harmful ramifications. For those who set policy, make decisions or are looking for an excuse not to lend a hand to help family caregivers, this gives them the ammunition they need.
For studies to be reputable, they are held to three specific tenets: Reliable (results can be replicated), Unbiased and Generalizable. Scientists limited this study to six specific genetic markers looking for specific reactions based on inflammation. To achieve that “pinpoint” view, assumptions were built into the study. When I read the EurekaAlert! article I had major concerns with the study’s assumptions. But when the headline changed, I could not let it pass unnoticed, so I reached out to colleagues on four key points.
1. Why Do the Study?
Study co-author David Roth, PhD, Professor of Medicine at the Johns Hopkins University School of Medicine and Director of the Johns Hopkins Center on Aging and Health, says the main goal was to “…challenge past study findings, address potential caregivers’ concerns about the toll on their health, and provide hope and relief to people needing or wanting to help.”
“Challenge past study findings…”
Why should “past study findings” be challenged? The physical and mental impact on family caregivers and the family caregiving experiences that cause negative impacts is well documented in this NIH study The Physical and Mental Health Effects of Family Caregiving and others. The impact touches all facets of the caregiver’s life, including work. Those who are employed (and 74% are) cost employers 8% more because of those conditions, adding $13B to annual employer health care costs. (1)
Denise Brown, Founder, “The Caregiving Years Training Academy, commented, “Caregivers would welcome studies to better understand our stress and find ways to relieve it. Why challenge previous studies, what’s wrong with them? We need to focus on better understanding the family caregiver experience. After listening to family caregivers for 25 years, we are missing the boat when it comes to addressing caregiving stress, an overlooked epidemic in our communities. In 2016, I began an ongoing survey about caregiving stress. To date, 1,158 family caregivers have rated their stress level at 4.14 on a scale of 1 to 5 with 5 being the most stressed. The stories they share are heart-breaking.”
“…Address potential caregivers’ concerns about the toll on their health…”
Caregivers in general don’t take care of their health because their caree’s needs come first and time and money are limited. This has nothing to do with genetic markers and everything do with the emotional and mental stress of caregiving. Stress can manifest itself in other ways that are not connected to the six genetic markers studied. Unfortunately, emotional and mental stress was never addressed or even mentioned in the results of this research.
“…Provide hope and relief to people needing or wanting to help…”
Provide hope and relief to whom? I take this statement to mean that siblings, other family members or friends who might help do not because they fear it will harm their health. What this assumption is based on is never addressed and speaks to other’s stress not the caregiver’s.
2. Are biomarkers enough?
The study was limited to six inflammation biomarkers believed to be “…associated with loneliness, depression, suppressed immunity, cancer and increased mortality.” It measured those at the start and end of a nine-year study. When there was no increase in those biomarkers, it concluded caregivers were not stressed and, therefore, their health was not at risk.
Glenna Crooks, PhD., author The SeniorSage (in publication), former Reagan Administration policy official and Merck Global VP commented, “The abstract says chronic stress has been “widely proposed to increase systemic inflammation, a pathway that may link stress with a heightened risk for many diseases.” (emphasis mine.)
“I read this as a set of “daisy-chain” speculations. Simply said: an unproven proposal about the link between some biomarkers of inflammation that may create a risk of certain diseases was the study’s endpoint. The results are not enough to unseat what we know about the health risks of caregivers.
It should have also tracked their health outcomes. Did they have more physician visits? Did they take more medicines? Were they hospitalized more often? Did they suffer injuries in the course of providing care? Did they gain weight, drink more alcohol or smoke more, all factors that could lead to problems later? Those questions should be answered as well. Relying on biomarkers we only suspect is implicated in health risks is not enough.”
3. Do the study participants make sense?
Participants in the study were in the University of Alabama at Birmingham’s ongoing Reasons for Geographic and Racial Differences in Stroke project.
Regions of the U.S. have a characteristic ethos; urban cities and rural towns can have a different ethos within the same region. Culture matters. According to a friend who grew up in the south and has spent his career in the medical and eldercare profession, the ethos in that region is one involving a great sense of duty. Those studied in Alabama may feel they must fulfill this role to the bitter end no matter the toll it takes on their physical and mental health.
Wendy Hautzinger, MPH, CCC commented,
“One important caveat in research and a limitation of this study, is that subjects were already participating in the Reasons for Geographic and Racial Differences in Stroke project. Because study participants often receive educational, medical, and/or financial support, they may be at a different level of stress (typically lower levels) than those who are not participating in a study.”
4. How will decision-makers react?
Glenna Crooks, PhD responded, “A study of this type will be dangerous in policy circles. Policymakers are busy and rarely experts on the issues they legislate and programs they decide to fund. The title of the research article is innocuous, but the title of the press report is damning to the cause of caregiving support needs.
Policymakers won’t ever see the research article. However, at best they’ll read the press article but probably won’t even do that. They’ll see the title, stop there and have the soundbite they need to vote ‘no’ on supportive legislation or funding. This could have a chilling and tragic effect on caregiving-support programs and resources.”
Trust your family caregiving experience and advocate for financial, emotional and physical help.
The conclusion of this research is harmful and the sound bite headline is potentially devastating to family caregiver needs. If this research does nothing else, I hope it moves you to learn about local, state and national policies being proposed and advocate for them. Advocate for them by telling your story to policymakers. Advocate for them by contacting your state and local representation and let them know this is an issue you vote on. Advocate for yourself when someone discounts the physical and emotional toll caregiving is taking on you.
One more thought and this one is for Dr. Roth and his team who wanted the study to “address potential caregivers’ concerns about the toll on their health.” Here’s the thing, family caregivers are not worried about its effect on their health. They are worried about losing their jobs due to caregiving issues. They are stressed about the toll it is taking on their children and spouse. They worry about the financial responsibility they take on. They feel guilty about gaining weight, feeling depressed and the emotions of anger, resentment and frustration that are a part of a family caregiver’s life. Dr. Roth, you missed the boat on what family caregivers are worried about.
(1) MetLife Study of Working Caregivers and Employer Health Care Costs, at https://www.metlife.com/mmi/research/working-caregiver-employer-health-care-costs.html#findings
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: firstname.lastname@example.org