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 out of 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 200 radio stations and his podcast is downloaded regularly in more than 100 countries. For 34 years, Peter has cared for his wife, Gracie, who lives with severe disabilities and chronic pain.