From Swallow Press
I was good with my father, but terrible with my mother’s mother....
Recently I was trying to figure out when she died. My guess was about 1969, and I went online to see if that was right. To my dismay, I discovered that she lived on in that Connecticut nursing home until 1975, three years after my mother died—and not once, in all that time, did I ever go to see her. I don’t know if anyone did. Not my brother, he admits. Not my cousin. Perhaps we all thought it was useless, because she wouldn’t know who we were. But to imagine her in that home, old and confused and alone, now horrifies me. It’s true that I was out of the country for half those years, wrapped up with my marriage and divorce and young son. But Gran had been a warm and lovely presence when I was a child. Didn’t I even wonder how she was doing? How can I, and the rest of us, have abandoned Anna Taylor Lemont so completely? It torments me.
And across the U.S. today, how many Alzheimer’s patients live as my grandmother did, with rarely or never a visit from family and friends? It seems a travesty, and I’ve been part of it. It’s an indication, I think, of how difficult and painful this disease can be for all who are touched by it.
In the years since my father died, little has changed about this disease. There is still no cure, and scant prevention. The one new dementia drug approved by the FDA in almost two decades, Aduhelm, has been widely doubted, and will not be prescribed by several hospital systems, including Cleveland Clinic and New York’s Mt. Sinai. But the march of the disease is steady. In a little over a decade, the number of Alzheimer’s patients in the U.S. has gone from five to six million.
Here’s the close to my new introduction:
It was not a given at the start that I would leave Ohio and move in with my father on Cape Cod. I didn’t want to abandon my friends, the upkeep of the houses I’d built, the volleyball and tennis I played every week. But it was growing clear that my father was going to need me. Those were early days, when Dad was first forgetting the way home in his car, and buying Christmas cards for a non-existent great-granddaughter and great-great-granddaughter. As I imagined living with him around the clock, day after day, I wondered if the job would crush me. At one point I laid out my dilemma to a friend, Kathy Galt, who over many years had been steadfast with her own family. I told her I might be called on, but didn’t know if I could handle it. We talked it back and forth. She understood what I’d be giving up, and what I’d be taking on. She listened to me, but in her own life she’d already made plenty of decisions like this.
"When it comes to a choice,” she said, “do what you can’t do later.”
The Latest from the FDA
This is from the Introduction to the Second Edition:
In spite of various clinical trials, the list of FDA-approved medications for Alzheimer’s has hardly changed since my father died in 2005. Three of their approved drugs are cholinesterase inhibitors, and the Alzheimer’s Association notes that people taking such drugs “performed better on memory and thinking tests than those taking a placebo.” They add, however, that “the degree of improvement was small.” My father took one of those drugs for a time—Aricept—but to no clear effect.
The latest drug to win FDA approval is aducanumab, which will be sold by Biogen under the trade name Aduhelm. It’s likely to be prescribed for early- and mid-stage Alzheimer’s patients, and will be administered monthly, by infusion. Clinical trials have shown that it lowers the amount of amyloid plaque in the brain, but its ability to slow cognitive decline is still in question. One Biogen trial showed aducanumab to be mildly effective, but a second trial yielded no benefits over the placebo.
The Alzheimer’s Association has welcomed the drug, which is understandable, given the long wait for a medication that will alleviate one of the country’s major health care problems. Critics of aducanumab point out that the FDA ignored the findings of its own panel of independent advisors, which recommended, in the fall of 2020, that the drug should not be approved. They also note the potential side effects. Some 40% of the patients in the original trials suffered from painful brain swelling, and about 17% from small cerebral hemorrhages. To monitor these problems, patients will take MRI brain scans twice a year.
Trials are underway for several other Alzheimer’s drugs, but there’s nothing in sight that would cure the disease. We hope at best to slow it down—and even this can be wildly expensive. Biogen has set Aduhelm’s price at $56,000 a year. Medicare may cover 80% of this charge, but if it does, and many patients sign up, the cost could swamp Medicare’s budget. Nevertheless, as the first drug approved for Alzheimer’s in eighteen years, it’s a ray of hope for some.
(NB: The FDA has recently restricted their recommendations for Aduhelm, and now feels it should only be given to early, not mid-stage Alzheimer's patients.)