Just four days before she died, Parton said that she was being treated for health problems that she “didn’t pay attention to when I was watching over Carl.” She was talking about the years she spent caring for her husband through a long illness. The interview moved on to her upcoming projects, and that line went by so quickly that most people missed it. As we reflect on her death, I think it was a clear wake-up call to America.
In my mid-30s, I suddenly became a spousal caregiver for my wife through her cancer battle. It took an enormous toll on my own health, and woke me up to the harsh realities that millions of Americans face. I realized that supporting caregivers is one of the biggest unmet societal needs of our time, and I decided to dedicate the rest of my life to helping caregivers.
But with our rapidly aging population, rising rates of dementia, cancer, and serious illness, all of which place a huge caregiving burden on spouses or adult children, I think now is a critical time to talk about caregiving, before it totally breaks our society. Parton’s death can be the wake-up call to change the societal narrative and bring about much-needed changes to support caregivers.
We have known for a quarter century that this work can literally kill the person doing it. In the Caregiver Health Effects Study, published in JAMA in 1999, elderly spousal caregivers who reported strain had a four-year mortality rate 63% higher than non-caregiving spouses.
When Blue Cross Blue Shield went into its own claims database and identified 6.7 million members who were caregivers, it found that caregivers had 26% poorer overall health than a matched benchmark. They were 64% more likely to have high blood pressure, 37% more likely to have major depression, and 34% more likely to have anxiety. Among Millennials, the so-called “sandwich generation” raising their children while managing an aging parent’s illness, the rates of hypertension ran 82% higher and hospitalizations ran 59% higher. The health care system can already see clearly what caregiving does to someone’s own health. It simply has not adjusted the way it responds to help caregivers.
So what’s the solution? We can start with making caregiving a diagnosis.
By that standard, caregiving should be at the top of the list. It elevates blood pressure, depression, and inflammation, suppresses immune response, correlates with a measurable rise in mortality. And unlike most other risk factors, it is very obvious who might be affected.
In my years as a cancer caregiver for my wife, taking her to dozens of appointments and treatments, I was never once asked how I was doing or how my health was holding up. Only 15% of caregivers have ever been asked by a health care provider how they are doing. Even on the mental-health side, clinicians still lack the diagnostic pathway to bill for supporting caregivers, so even if caregiver burden is documented, it’s not treated because it’s not billable. Our health care system can bill for almost anything these days, yet it cannot bill for one of the most common health exposures in American life.
If you know a caregiver, please stop texting, “let me know if you need anything.” An exhausted caregiver will never ask, and answering requires more work and inventing a task for you. Just name a day and a four-hour window, and show up. Bring food for them and take over the care duties for a few hours, so they can get a much-needed break to go watch a movie, go to their own doctor’s appointment, sit in a park, or take a nap.
As a country, we need to see caregivers, name the burden, and pay for it. Register caregivers alongside the patient, and screen them for physical health, mental health, and economic stability, with actual corresponding help. We should fund respite care and tax credits for caregivers. Unpaid family caregivers deliver over a trillion dollars of economic value in care every year, and we need to decide that’s worth supporting.
That is the memorial Dolly Parton earned, and the best way we can honor her legacy.
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