The Care We Dream Of

JESSICA SCHUMAKER – About two years before he died, my grandfather forgot my name. He called me by my cousin’s name during conversations. My father told me to remind him of who I was, but I didn’t see the point; I was just happy to speak with him. We talked of mundane things: my plans for college, financial advice, if the Yankees would make it to the series this year. To me, it did not matter that he no longer knew my name. He still said he loved me when I told him goodnight, and that was enough.

My grandfather died almost six months ago. About three weeks ago my dad sent me an article about a new Alzheimer’s drug, Lecanemab. It claimed to reduce the speed of cognitive decline in early-stage Alzheimer’s patients by 27% compared to participants with Alzheimer’s who received a placebo. The side effects were minor: swelling and brain hemorrhages that were benign, both of which had little effect on most participants. 

To be clear, this drug does not halt the progression of Alzheimer’s; it merely gives those afflicted a longer prognosis. But there are problems beyond the progression of the disease. Doctors say Alzheimer’s clinics currently do not have the resources to care for the amount of people who would enroll in this therapy, which involves regular infusions and imaging to check for side effects. Alzheimer’s clinics are excited at the prospect, but they fear the reality of not having the workforce nor resources to administer care to everyone who needs it.

Alzheimer’s is an avaricious disease. It begins in the mundane, with the misplacement of objects and names that slip away from the tongue; mistakes that could be caused by any number of things. Then the afflicted person becomes moored in the middle stage, sometimes for years. The mood swings, the wandering, how intrinsic information becomes so lost that the person is refracted into pieces of clear and unclear memory. With the potential of this new drug, I can’t help but wonder if this is a state people would wish to prolong.

My grandmother was a nurse, and she cared for my grandfather until he died, despite being 83 years old herself. It was unsustainable for both of them, emotionally and physically. For those who can afford proper aid and care to sustain family members with Alzheimer’s, this drug represents a promising path forward. But for others who cannot access outside aid to help care for their loved one as they progress further into the disease, hardship for everyone may be prolonged.

That being said, had this drug been available to my grandfather when he was in the early stages of Alzheimer’s, I would have wanted him to take it. But I also would have wanted there to be systems in place to aid with the cost of his care, counseling for my grandmother, and other resources to make his longer journey more comfortable. Care does not end with a drug or an infusion; it extends to the support of the community and individuals. My grandfather deserved that kind of care.

Copy Editor – Yeongseo Son

Photography Source – https://www.newscientist.com/article/2191814-we-may-finally-know-what-causes-alzheimers-and-how-to-stop-it/