In the middle of a Zoom call with old friends, up popped the news alert: President Donald Trump had finally signed the budget bill. Help would soon be on its way. And not just the pandemic relief checks, but all kinds of help, including increased funding for Alzheimer’s research.
For those of us whose families have felt the toll of Alzheimer’s disease — which included all six of us on that Zoom call — this is welcome news. And it comes just days before the 10th anniversary of the National Alzheimer’s Project Act (NAPA). Signed into law by President Barack Obama on Jan. 4, 2011, NAPA created the first cohesive national plan to address Alzheimer’s support, care and research. Before NAPA, annual federal funding for Alzheimer’s research topped out at $448 million. In the spending bill signed late last month, the budget for Alzheimer’s research was boosted by $300 million, to an annual total of $3.1 billion. The bill also includes $15 million in funding to increase early detection, diagnosis and access to vital care-planning services.
Funding is essential. But so is the way we talk about Alzheimer’s, and that too has changed profoundly in the past decade.
I felt it on Nov. 7, as I listened to Joe Biden’s first speech as President-elect.
“I believe in the possibilities of this country,” Biden said. “We’re always looking ahead. Ahead to an America that is freer and more just. Ahead to an America that creates jobs with dignity and respect. Ahead to an America that cures diseases like cancer and Alzheimer’s.”
Biden packed a lot into his 15-minute speech. But Alzheimer’s was in there, and for many of us, it was a moment, especially in a year that has been particularly hard for the more than 5 million American families dealing with dementia.
In the summer of 2020, one of my pandemic projects was to record an audiobook version of “Her Beautiful Brain,” my memoir about my beautiful, brainy mother, who died at 74 of Alzheimer’s disease. As I read out loud the pages I wrote 10 years ago, I was struck by how much the way we use the word — Alzheimer’s — has changed. And by how much progress we’ve made in learning to bring it up in conversation, and not just as a tasteless joke about “Alzheimer’s moments.” Remember when people used to refer to cancer as the “C-word?” Alzheimer’s disease was even more unmentionable, as if a disease that destroys the brain is somehow the fault of the person who gets it.
My first lesson in how to go about de-stigmatizing a scary disease came from my mother. After she was diagnosed, she would say to people — store clerks, restaurant servers, friends whose names she didn’t remember — “You’ll have to be patient with me. I have Alzheimer’s disease.” Sometimes, people would back away, as if they feared it was contagious. I was always proud of her in those moments. It can’t have been easy. I believe some measure of her courage came from her Alzheimer’s Association support group. But Mom was a teacher, and that simple statement was, as we now like to say, a teachable moment.
And that’s why that mention in Biden’s speech was important: It too was a teachable moment. He said it so naturally, so readily, because he knows, as someone who overcame a stutter, how damaging a stigma can be.
I watched Biden that night with my husband and a few friends. We had the windows and doors open and our coats and masks on. But when he said those words — “an America that cures diseases like cancer and Alzheimer’s” — they all turned to me, eyes popping above their masks.
“Ann, did you hear that? Did you hear what he said?”
Thank you, President-elect Biden. Thank you, grassroots Alzheimer’s activists. And thank you, U.S. Sen. Patty Murray, for your leadership in securing that funding increase. May 2021 be a banner year for Alzheimer’s research, and a banishing year for the stigma still attached to this disease.
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