For over a century, people living with Alzheimer’s disease and their caregivers have been caught in a vortex of uneven, frustrating progress.
Even as late as the 1990s, medicine didn’t care much about people living with Alzheimer’s, which totals about 280,000 in Pennsylvania today. In medical school, I was taught that the millions of older adults with dementia were suffering not from this disease but from “senility” caused by extreme aging. There was little we could do for them, save for palliating their most extreme symptoms. Researchers had no interest in the causes of or treatments for their problems.
For much of the 20th century, society didn’t care about the suffering of these elderly. American families were left to their own devices to figure out how to live with and care for a person with Alzheimer’s.
By 1980, seven angry families said enough. They formed the Alzheimer’s Association, modeled after a self-help group — the distinctly American approach to problems society either ignores or doesn’t seem to care about. Among their leaders was Hilda Pridgeon. Caregiver for her husband, Al, she knew how hard it was to find and pay for care.
Much of the triple-digit billion-dollar annual cost of Alzheimer’s remains the cost of families providing care with their uncompensated time and savings.
Therein lies the anger of some caregivers and patients toward the FDA’s decision on Aduhelm. An expensive treatment with uncertain patient benefits is available — while treatments that have been shown to improve patient and caregiver well-being aren’t.