Dr. Jason Karlawish takes us through the history of Alzheimer’s and how it became a national crisis. Currently, there are over 6 million Americans living with the disease, with no cure in sight. Take a look inside laboratories, patients’ homes, caregivers’ support groups, progressive care communities in, The Problem of Alzheimer’s.  

Read an excerpt below of The Problem of Alzheimer’s below.

 

In 1974, Hilda Pridgeon’s husband, Al, was diagnosed with Alzheimer’s disease. At fifty, he was out of his job as a factory manager and unemployable. Her life as a housewife, secretary, and mother of three teenaged children was at risk for coming undone. It was her job, and hers alone, to keep the family together financially, emotionally, and spiritually. Beloved and respected by the other board members and staff, Pridgeon was known for a tireless work ethic, unyielding commitment to the association, and a quiet, no-nonsense demeanor. No doubt she was proud of the chapters she shepherded into existence. They gave women like her access to information, support, and skills to care for their relatives.

Pridgeon was also frustrated. In a 1989 interview with the Associated Press, she observed: “It’s amazing that the richest country in the world can’t take care of its older people without impoverishing their spouses. People are going through their resources very rapidly.”

She knew firsthand what she was talking about. After Al ceased working, she’d stared poverty in the face. There were two children’s college tuition bills to pay and a third child in high school. She was determined to rise from the secretarial pool at Control Data Corporation into a better-paying position in management.

She enrolled in a college degree program. Rising at 4:00 a.m. gave her two hours to study before she helped Al get dressed, bathed, and fed. In time, leaving her husband home alone while she worked became too dangerous for him and too stressful for her. His lunch remained in the refrigerator uneaten. She couldn’t quit work to take care of him and struggled to find care the family could afford.

She took him to the Courage Center, a day care program, in hope that they could provide him a safe and social environment while she worked. “Go home,” said the doctor. “You don’t have any problems.” The center only cared for patients with physical disabilities. She finally found a place that would have him, the Sister Kenny Day Care Center.

But how to pay for it?

She wrote to Medicare, explaining that she needed to work during the day and yes, the Sister Kenny Day Care Center wasn’t medicine, but it was the only prescription that would help her husband.

Years later in an interview, she recounted the response from Medicare. “I just wanted the man in charge of Medicare for the Twin Cities area to sit down and talk to me. But he wouldn’t even talk to me. He sent a letter back that said, ‘That’s entertainment for your husband and a relief for you and it doesn’t qualify.’ The fact that I had to work and that I had to have some help didn’t matter.”

Hilda Pridgeon was a witness to and victim of the US health care system’s enduring failures. Medicare’s statutory language strictly defines that the social insurance program paid for the “usual and customary medical care” doctors’ prescribed out of their offices and hospitals. A prescription for adult day care was not “usual and customary” medical care. It was considered “custodial” or “long-term” care. Medicare didn’t pay for that. The Pridgeon family was on their own.

A wealthy man like Jerry Stone could manage the costs of caring for a person with dementia. At one point, he paid a staff of fifteen caregivers to care for Evelyn in their home. But for a middle-class woman like Hilda Pridgeon, caregiving was a tragedy. Support from the state was only available if she spent their savings and, as a result, the family became impoverished. Then and only then not Medicare but Medicaid—state welfare—would pay for Al’s care. Or she could divorce him and thus leave him to the care of the state.

The problem was a divided Congress. It agreed to fund the NIH to support research to discover a cure. It could not agree on how to care for persons with Alzheimer’s disease. The idea of social insurance for long-term care, to support the costs of interventions such as an adult day care program and the time spent caregiving, exposed ideologically charged flash points.

Hilda Pridgeon and other caregivers needed Congress to think and feel differently about the time and effort she spent to bathe, dress, feed, and be present with her husband. This wasn’t the private and freely given labor of family; this was caregiving. Congress needed to recognize that Hilda Pridgeon was offering skilled labor worthy of a wage paid either to her or to someone else while she worked at Control Data Corporation. Congress, however, couldn’t agree that this new way of thinking and feeling about living with and caring for a person with dementia required revisions to Medicare to pay for long-term care for people like Al Pridgeon.

Hilda Pridgeon testified on behalf of the Alzheimer’s Association at the same 1990 joint House and Senate hearing where Senator Hatfield told his colleagues of his father “reduced to practically nothing—as almost a vegetable.”

She recounted her story of caring for Al and then she expanded her vision. She talked about “the national crisis” whose annual bill is $80 to $90 billion. She emphasized that this bill is paid for by families. Most of the billion-dollar cost of Alzheimer’s disease was—and still is—the tally of the time caregivers spend to provide care instead of working or the money the caregiver pays to someone else to care for their relative.

“People are afraid. I’m afraid,” Pridgeon told the Congress. “They are afraid of what will happen to them if they get this disease. They are even more afraid of how their families will cope.”

Even more afraid.

It was as if she were back at the acrimonious October 1979 afternoon meeting in the NIH conference room, when the representatives of the seven families were caught up in the tense struggle to reconcile how to help all the many selves affected by Alzheimer’s disease. Should their focus be dementia, Alzheimer’s disease and other causes of dementia, or just Alzheimer’s disease? Should they be advocating for a cure for the disease or care for patients and their families? Or both? On this April morning, some eleven years later, she was advocating for care.

“We cannot yet prevent the terrible emotional cost of Alzheimer’s disease,”

she admitted. “But we can and must do something about the financial burden that is impoverishing all but the wealthiest families.” She concluded with the specifics of national legislation needed to provide social insurance for patients and their families who need long-term care.

Congress listened but did nothing.

From The Problem of Alzheimer’s by Jason Karlawish. Copyright 2021 by the author and reprinted by permission of St. Martin’s Publishing Group.