What can the Biden administration do to stop Alzheimer’s? How can people with advanced stages of cognitive decline experience end-of-life moments of lucidity? What lessons can we learn at the lonely intersection of the pandemic and dementia? In case you missed them, our contributors round up their favorite reads of February.
To stay on top of the latest news in Alzheimer’s and dementia, and to represent a breadth of voices, we do a lot of reading. Here are some of the articles from other outlets that contributors found the most interesting, moving, and important.
The Guardian: ‘The Clouds Cleared’: What Terminal Lucidity Teaches Us About Life, Death and Dementia, Feb. 23
TIME: How The Biden Administration Can Fight Alzheimer’s, Feb. 24
On November 7 in President Joseph Biden’s victory speech, he gave many people hope when he said: “You see, I believe in the possibility of this country. We’re always looking ahead … Ahead to an America that cures disease — like cancer and Alzheimers.” In this op-ed published by TIME Magazine, Maria Shriver, the founder of Women’s Alzheimer’s Movement, and chair of UsAgainstAlzheimer’s George Vradenburg, call on the Biden administration to deliver on the promise he made in his victory speech. How to do that? Shriver and Vrandenburg say it’s time to launch an Operation Warp Speed for Alzheimer’s and other dementias, leveraging the same unparalleled collaborative public-private partnership — unhindered by red tape — between pharmaceutical companies, NIH and FDA that emerged in the quest to develop COVID-19 vaccines. Alzheimer’s, also a pandemic, should be treated with the same all-in urgency: “Leveraging this model to combat Alzheimer’s will be critical – especially as the disease is unlikely to be solved with a simple vaccine,” the authors write. –Alexandra Marvar
As many well know, nursing homes were among the hardest hit during the pandemic. In a New York Times op-ed, freelance journalist Katie Engelhart shares what she discovered during her year-long deep dive into understanding “what it feels like to live through this terribly disorienting time inside a mind that is already deeply disoriented.” She chronicles the fear, frustration, loneliness and confusion amongst people with dementia, now confined to their rooms and without the activities and routines that gave their lives structure and greater purpose. One gentleman, confused about the virus, asked: “How long are they going to keep us locked up in here like goddamn animals?” Another woman told Engelhart she believes she won’t leave her nursing home alive, “or at least not alive in the way that she is used to being.” In an account as heartbreaking as it is important, Engelhart’s reporting underscores the need for a gentler, more social nursing home experience — one that is safe, without being devoid of the things that make us human. –Genevieve Glass
Marion Renault writes for The Atlantic about the suffering of those living with dementia when they feel pain, but don’t understand it. Weaving in the story of her grandmother, who is in the late stages of Alzheimer’s and fractured a vertebra last year, Renault reflects on how the medical community has long struggled to measure and relieve pain in people with dementia. But, she notes that one of the basic forms of care — the presence of another human being — can help ease their suffering. “On the worst of days, all I could do for her was lie down in bed beside her as she whimpered,” Renault writes of her grandmother. “More than once, we fell asleep holding hands. ‘Je t’aime,’ she’d repeat, finally unburdened. ‘J’ai pas peur’: ‘I love you. I’m not afraid.’” –Nicholas Chan
New York Times Modern Love: The Day His Journal Went Blank, Feb. 5
In the New York Times’ Modern Love column, Annabelle Allen writes a riveting story where she gains a new perspective on who her father was before he developed Alzheimer’s. She finds it all through his journal, filled with life but long forgotten by the very man who wrote it. “When I read my father’s entries, I feel less lost,” she writes. “I not only recognize the person my father used to be, but I recognize myself.” –Queenie Lacaben