Dementia had not robbed Lillian of her fiercely independent spirit, but it had made her verbally and sometimes physically aggressive, and she would fight back against caregivers other than Scott. Whenever Scott undertook essential errands, she depended on her mother or an aide to stay with her grandmother briefly, so she “only went out under extreme, extreme reasons: I had to go to the laundromat, I had to get food. That’s it.” She had to stop working and even postponed a surgery she needed. It was a “very precarious situation,” she said.
An estimated 47.9 million adults in the United States — a staggering 19.3 percent — provide informal care to an adult with physical or mental health needs. This unpaid work, which includes everything from trips to the doctor to feeding, bathing, and toileting, has been valued at $470 billion per year, equivalent to three-quarters of the entire budget of Medicaid. Even in the best of times, the vast majority of this work is invisible and undersupported, leaving millions of caregivers struggling in silence. The Covid-19 pandemic pushed many caregivers into crisis.
Interviews with caregivers, researchers, and advocates, along with early data about the pandemic’s impact on this vast and diverse group, reveal widespread and alarming rates of anxiety, depression, and other mental health issues. They expose a national failure to support this vital part of our society — one that many of us will depend on at some point in life.
Anakinra is expensive — on average, private health plans pay about $4,000 a month for it — so we needed to get approval before it would be covered....